Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 --Welcome to all our new members. Glad to have you aboard! Marti - In , " leighanns76 " <bugs524@d...> wrote: > Hello Everyone! > > I would like to introduce myself. My name is Leigh Ann I'm 27 years > old from Ohio. I have had Psoriasis since I was 12 years old after > my parents divorse. Two to Three years later I developed signs of > Psoriatic Arthristis in my left knee but the doctors said it was my > imganation. So I dealt with it the best I could. After several > doctors and lots of money I gave up on the medical field on any help. > > I started trying different over the counter items until 2002 when I > was to the point that I couldn't get around on my own. 2002 I went > to a doctor who sent me to a sports medicine doctor who said had > tests done - x-ray and MRI They came back with early signs of > arthrisis and had a torn mulisics (spelling?) He then sent me to an > arthristis doctor. She said that I had the PA. The pass 8 months > the PA has developed in my lower back, and right hand. > > Two year I went to her with some relief but no 100% relief. Early > this year I started going to another doctor. Who had increased some > medications as he said that I wasn't on enough and said that not all > my pain is the PA. He believes that my lower back pain is due to > something else. Last months visit the doctor didn't have the > results to the x-rays. So I'm still waiting to hear what they found > out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Don't neglect the all-important colon cleanse.. > > Hi Folks. (I just posted to the Testimonials page, then realized > that page is not for general questions, etc) I've been reading the > archives with much interest. Thanks for all the enthusiasm. I'm a > 42 year old male with multiple health issues - Hepatitis-C, > Hypoglycemia, Hypoadrenalism, recovering alcoholic/drug-addict, > Candida overgrowth, food allergies, and who knows what else? LOL. My > body is also underweight and non-developed. My body weight has been > around 120 lbs since my early 20's. (Even less prior to that) My > body entered puberty very late and never really attained what I would > consider a typical adult state - very little body hair, minimal > muscle development - these are just the observable characteristics - > similarly, I'm sure that internally, the organs, body processes, etc > are not quite developed fully. Have been living a more healthy > lifestyle for the past 10 years, stopped some bad addictions, started > eating whole/organic, and trying different modes of healing (TCM, > acupuncture, homeopathic, colon cleansing, metabolic typing diets), > but with not alot of progress. > > Anyway, I discovered Dr. about a year ago, read parts of her > book, but got sidetracked with some other doctors in the meantime. > It all sounds so great, but I admit, I have had some doubts. But > recently a friend of mine from my yoga/meditation group has told me > of the great success he had with the Dr. Liver cleanse - that > his digestion improved dramatically after doing the cleanse. So I > decided to try that... though I'm going to first do the Parasite and > Kidney programs. I should be receiving the Parasite program and > zapper this week. I am very enthusiastic. In the past, I have > wondered whether parasites (other than candida) were causing my > underweight condition. It seems that no matter what I eat I cant > gain weight. I've always wondered whether the food I eat is > nourishing something else besides my own body. Have done several > stool tests that come up negative for any parasites other than > candida. > > Anyway, any of your experience, strength, hope, etc would be > appreciated. Thanks much! > > -sg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 SG ~ Sounds like you are on the right path and in the right direction. Likely the parasite cleanse will help you absorb the nutrition and calories from your food, along with Hulda's kidney, liver, and bowel cleanses. Great to hear you're getting a zapper also! :-) Her kidney and liver cleanses will do good things for your digestion as well, which will help in absorbing your nutrients appropriately. Look forward to hearing how you progress. We're sure you'll enjoy the results, tho likely you won't like the taste of the epsom salts in the liver cleanse! Rest assured, the benefits (visably seeing gall stones removed from your body and better digestion) are worth the foul taste of that one! Thankfully, none of the others taste too bad! Hugs, Howls, Health, & Happiness, & Critters Wolf Creek Ranch mailto:wolfcreek1@... http://wolfcreekranch1.tripod.com/index.html Home of Whispering Winds Wholistic Animal Sanctuary MASH Rescue http://www.mashrescue.org " Excellence is the result of caring more than others think is wise; risking more than others think is safe; dreaming more than others think is practical; and expecting more than others think is possible. " -Anonymous > Hi Folks. (I just posted to the Testimonials page, then realized > that page is not for general questions, etc) I've been reading the > archives with much interest. Thanks for all the enthusiasm. I'm a > 42 year old male with multiple health issues - Hepatitis-C, > Hypoglycemia, Hypoadrenalism, recovering alcoholic/drug-addict, > Candida overgrowth, food allergies, and who knows what else? LOL. My > body is also underweight and non-developed. My body weight has been > around 120 lbs since my early 20's. (Even less prior to that) My > body entered puberty very late and never really attained what I would > consider a typical adult state - very little body hair, minimal > muscle development - these are just the observable characteristics - > similarly, I'm sure that internally, the organs, body processes, etc > are not quite developed fully. Have been living a more healthy > lifestyle for the past 10 years, stopped some bad addictions, started > eating whole/organic, and trying different modes of healing (TCM, > acupuncture, homeopathic, colon cleansing, metabolic typing diets), > but with not alot of progress. > > Anyway, I discovered Dr. about a year ago, read parts of her > book, but got sidetracked with some other doctors in the meantime. > It all sounds so great, but I admit, I have had some doubts. But > recently a friend of mine from my yoga/meditation group has told me > of the great success he had with the Dr. Liver cleanse - that > his digestion improved dramatically after doing the cleanse. So I > decided to try that... though I'm going to first do the Parasite and > Kidney programs. I should be receiving the Parasite program and > zapper this week. I am very enthusiastic. In the past, I have > wondered whether parasites (other than candida) were causing my > underweight condition. It seems that no matter what I eat I cant > gain weight. I've always wondered whether the food I eat is > nourishing something else besides my own body. Have done several > stool tests that come up negative for any parasites other than > candida. > > Anyway, any of your experience, strength, hope, etc would be > appreciated. Thanks much! > > -sg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 SG: Have you ever been tested for celiac disease or Crohn's? In addition to following Dr. 's protocols, you may want to give the Specific Carbohydrate Diet ( " SCD " ) a chance: http://www.breakingtheviciouscycle.info/ . I've found that there is a lot of consistency with the SCD and Dr. 's protocols--the main area being processed foods are totally toxic. The SCD is designed to starve bacteria and get the gut ( & thereby your body) back to health. Best of luck to you as you try to improve your health, Lorna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi , Welcome to the group. The memebers are small because the list is only a little over one day old. My name is and my husband is . Our 4 year old with DS , , had AML. Her last dose of chemo was July 2002. I am going to steel the phrase from another parent, "this is like a ghost that always haunts you." I too wish there was a support list when we were going through this. Well, hopefully, we can all be of help to each other. spderekzmom <rivergal@...> wrote: Hi, my name is and I have a son (5) with DS and has been in remission from Leukemian (type AML). He was diagnosed Jan 31, 2001 and had his last LP on July 23, 2001. Its great to hear there is finally a support group for this. I look forward to meeting more people with the same experience.Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 I think the idea for this group was great. I just wish there was something like it when was going through treatment. I have to agree with you with that phrase. Not a bruise goes by or BW day gets closer and Im having a fit because Im thinking that he has relapsed. It is always there is the back of my mind, it dulls over time but will never go away. Hugs > Hi, my name is and I have a son (5) with DS and has > been in remission from Leukemian (type AML). He was diagnosed Jan > 31, 2001 and had his last LP on July 23, 2001. Its great to hear > there is finally a support group for this. I look forward to > meeting more people with the same experience. > > Hugs > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi ette!! Glad to see you made it. Hugs > Hello everyone. (s mom) told me about this site. I > think its great! I am ette mom to 4 girls (ds) 16 was > diagnosed January 2003 with high risk ALL and is currently > undergoing treatment. > She is on the 9906 protocol. In the begin she was quite ill but is > now getting her hair back and is back to school when she feels well. > We are from Ontario Canada. She is recieving her treatments at > Toronto Sick Kids. > take care > ette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 Welcome to the list. Are you using probiotics? S From: claudie122000 [mailto: claudetteb@...] Date: Thu, 27 May 2004 19:10:48 -0000 Subject: [ ] New Member <html><body> <tt> Hi - I am a new member to this group and would like to introduce<BR> myself. My name is Claudette Bardwil, mother to na<BR> (8yrs) diagnosed with PDD-NOS. My husband and I strongly<BR> believe that are daughter was not born this way.<BR> She was born with urinary reflux and her urologist prescribed<BR> antibiotic therapy to steralize her urine so it would not<BR> infect her kidneys. After a very bad breakthrough <BR> infection, 2 years later she had surgery to correct the reflux.<BR> The surgery was a success, but major damage was done in a<BR> very important area. na developed ulcerative colitis due<BR> to the overuse of antibiotics. Her pediatrician also <BR> kept her current on her vaccine schedule, with a weakened immune<BR> system the vaccines were the major insult. We went through<BR> several rounds of chelation therapy (Alpha lipoic acid and<BR> DMSA) and a great deal of mercury came out of her. It took <BR> awhile, but it came out. The side effects of chelation is<BR> yeast overgrowth, so since December 2003, we have been <BR> concentrating on healing her gastro-intestinal tract.<BR> We are healing her colitis through dietary intervention.<BR> We read the book " Breaking the Viscious Cycle " intestinal health<BR> through Diet by Elaine Gottschall, and we feel this diet is<BR> saving her life. Her ghost white face with dark circles under<BR> her eyes have gone away replacing with a nice pink <BR> color on her cheeks, her sensory and behavioral issues are <BR> less and less every day. It is basically a miracle, by healing<BR> her gut, the rest seems to be falling into place.<BR> If anyone out there has a child with bowel dysfunction,<BR> Ulcerative Colitis, Crohns, Celiac disease, they should seriously<BR> consider the " specific carbohydrate diet " to heal their child.<BR> My daughter is off all medication and is thriving.<BR> more information on this diet can be found under website:<BR> <a href= " http://www.pecanbread.com " >http://www.pecanbread.com</a><BR> If anyone needs help or advice, I would be happy to help.<BR> <BR> Thanks Claudette Bardwil<BR> Mom to na 8yrs PDD-NOS<BR> <BR> <BR> </tt> <br><br> <tt> =======================================================<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Why not read about Dr. Joanna Budwig? If you like what you read then groups flaxseed2 is dedicated to her protocol. Rhoda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 welcome Beverky and keep it up :-) [ ] New member > Hello, > > I had a CT scan in January...they found a tumor in my lung...saying it was a granuloma. > In April my oncologist wanted another CT scan..nothing had changed..however they took more and better pictures the second time..so didn't have everything to compare it to..they did say there was a blood supply..but it was too small for a PET scan or biopsy..so to rescan every three months for the next two years.. > I needed more info so went to see my oncologist who ordered a PET scan last week. > Something lit up 1.2...so he said ..it could be a granuloma...(I thought if it lit up at all it was cancer) and if it had been a 3 or 4 he would have it removed..but for now..he wants another CT scan exactly three months since the last one. > So I am waiting!!! I had Bcancer two years ago..nothing had spread nor was it in any nodes..but I did have radiation and am on the drug femara for a estrogen positive tumor. > I practically became a vegan when I first learned of my BCancer and kept it up for 1 1/2 year..then fell off the wagon..I want to go back to better eating. > I would like to know if any of the above rings a bell with any one and what you make of it? > Also I welcome a diet or website where I can learn what I need to do to help my body cope with this and hopefully it will never develop into anything more.. > But must say, it is a scary thing to even have the tumor in there. > I assume if anything grows the next step would be a biopsy. > Perhaps I shouldn't go there yet! > Thanks so very much. > Bev > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 -Exactly the regimen I was on. Although I stopped the MTX after my wife had a miscarriage and have not gone back on as I have been relatively ok since. I take the 5mg of pred, folic, voltarin, also glucosamine/chondraitin and 1500mg of calcium w/ vit D everyday ( five years) we watch my bone density because of the pred but I am able to get through the day with only minor pains. The drugs also keep my knee pain down from years of playing tennis professionally and I have almost no cartilage left in my right knee. so that is an added benefit best to you and good days ahead greg -- daciesmom <crissyclinton@...> wrote: > Well here goes my name is I am 26 and live in > Louisiana. I would > like to say that my beautiful wife has found this > list for me and I > am very thankful. I have recently been diagnosed > with Psoriatic > Arthritis well not sure if it is offical yet. I have > been seeing my > family doctor about this and other issues over the > past three months > and finaly today got my first appointment with my > Rheumatologist he is > 99% sure this is what I have but he had me do some > more blood work > today to make sure I don't have something else. I > have been taking > DICLOFENAC 75 mg twice daily this was from my > family doctor I have to > say it helps with the pain medication they take the > edge off and if I > would miss taking it I was a no go the next day > (very hard to get > around at all). Well my Rheumatologist is keeping me > on this and > starting these tomorrow. METHOTREXATE 2.5 MG four > tablets a day once a > week, METHYLPREDNISOLONE 4 MG one daily, FOLIC ACID > 1 MG one daily. > He seems very confident these are very likly to help > me a lot I have > to see him again in one month I have to do blood > work and back x-rays > before seeing him again. Does anyone know about the > x-rays I don't > remember if he told me why. Well I want to get any > as much information > as I can on this. I just want to say a little about > my self and would > like to know if everyone is like this. I have pain > and stiffness in > both shoulders, elbows, > knees!,wrists,hips,hands,also in my neck. Well > I think that is about it is, is everyone like this > or am I lucky. I > think I will stop for now before I scare everyone > off and no one will > want to reply this is my first post. I am sorry for > the long message > but I don't know much and I am trying to learn > everything that I can. > One more thing I usually work about 120 hours every > two weeks this is > usually hard but is almost becoming impossible. Can > anyone comment on > how this PA has affected there work? > > Thanks, > > [Editor's Note: Welcome, . Sorry that your > illness brought you here but here is where you will > find some support and experience. The treatment the > rheumy has suggested (Methotrexate {aka MTX}, > methylprednisolone and folic acid is probably pretty > common for starting things off. I suspect you will > be weaned off the methylprednisolone once your pain > and stiffness get under control. While these meds > may help you, please do not despair if they don't. > There are many other drugs out there that help a lot > of us. Personally, I continue to put in 40-50 hour > weeks and I'm 54. This would not have been possible > if I hadn't finally found a medication that helped > me. I know you are at the point of despair - but > the good news is that something out there will > possibly help you feel better and once you do, > working long hours may no longer seem as daunting as > it does now. On the other hand, you may need to > adjust your work habits because the reality is that > you DO have a disease and many people with PA cannot > work the kind of hours they did before PA really > acted up. The xrays will be used to determine if > you have already suffered measurable joint damage > from the disease. If you have not, these xrays will > serve as a baseline against which future xrays will > be measured to determine the progression of the > disease. Enough out of me. Kathy F.] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Hi . My name is Cheryle and I am also from Louisiana. I was just wondering what part of LA you are from. I live in Lake . Welcome to the board. This is a wonderful place to gather information, vent, etc. I was diagnosed with arthritis in my mid- twenties (I am 38 now) but only within the last couple of years did someone finally put the label, PA, on it. I am fortunate to have found a wonderful rheumatologist. I have tried a lot of treatments over the years with minimal sucess. Right now I am on 7.5mg MTX and Humira (one injection every other week) and it seems to be working pretty well. I am lucky not to have too much skin involvement (elbows and scalp) but it seems that every joint on my body hurts at times. Things are getting better though. Hope everything works out well for you. The most important thing is to find a good doctor who is proactive with the disease and has your best interest at heart. It makes all the difference in the world and support groups like these are also invaluable. Good luck and if you have any questions, feel free to ask. Cheryle > Well here goes my name is I am 26 and live in Louisiana. I would > like to say that my beautiful wife has found this list for me and I > am very thankful. I have recently been diagnosed with Psoriatic > Arthritis well not sure if it is offical yet. I have been seeing my > family doctor about this and other issues over the past three months > and finaly today got my first appointment with my Rheumatologist he is > 99% sure this is what I have but he had me do some more blood work > today to make sure I don't have something else. I have been taking > DICLOFENAC 75 mg twice daily this was from my family doctor I have to > say it helps with the pain medication they take the edge off and if I > would miss taking it I was a no go the next day (very hard to get > around at all). Well my Rheumatologist is keeping me on this and > starting these tomorrow. METHOTREXATE 2.5 MG four tablets a day once a > week, METHYLPREDNISOLONE 4 MG one daily, FOLIC ACID 1 MG one daily. > He seems very confident these are very likly to help me a lot I have > to see him again in one month I have to do blood work and back x- rays > before seeing him again. Does anyone know about the x-rays I don't > remember if he told me why. Well I want to get any as much information > as I can on this. I just want to say a little about my self and would > like to know if everyone is like this. I have pain and stiffness in > both shoulders, elbows, knees!,wrists,hips,hands,also in my neck. Well > I think that is about it is, is everyone like this or am I lucky. I > think I will stop for now before I scare everyone off and no one will > want to reply this is my first post. I am sorry for the long message > but I don't know much and I am trying to learn everything that I can. > One more thing I usually work about 120 hours every two weeks this is > usually hard but is almost becoming impossible. Can anyone comment on > how this PA has affected there work? > > Thanks, > > [Editor's Note: Welcome, . Sorry that your illness brought you here but here is where you will find some support and experience. The treatment the rheumy has suggested (Methotrexate {aka MTX}, methylprednisolone and folic acid is probably pretty common for starting things off. I suspect you will be weaned off the methylprednisolone once your pain and stiffness get under control. While these meds may help you, please do not despair if they don't. There are many other drugs out there that help a lot of us. Personally, I continue to put in 40-50 hour weeks and I'm 54. This would not have been possible if I hadn't finally found a medication that helped me. I know you are at the point of despair - but the good news is that something out there will possibly help you feel better and once you do, working long hours may no longer seem as daunting as it does now. On the other hand, you may need to adjust your work habits because the reality is that you DO have a disease and many people with PA cannot work the kind of hours they did before PA really acted up. The xrays will be used to determine if you have already suffered measurable joint damage from the disease. If you have not, these xrays will serve as a baseline against which future xrays will be measured to determine the progression of the disease. Enough out of me. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Hi . My name is Cheryle and I am also from Louisiana. I was just wondering what part of LA you are from. I live in Lake . Welcome to the board. This is a wonderful place to gather information, vent, etc. I was diagnosed with arthritis in my mid- twenties (I am 38 now) but only within the last couple of years did someone finally put the label, PA, on it. I am fortunate to have found a wonderful rheumatologist. I have tried a lot of treatments over the years with minimal sucess. Right now I am on 7.5mg MTX and Humira (one injection every other week) and it seems to be working pretty well. I am lucky not to have too much skin involvement (elbows and scalp) but it seems that every joint on my body hurts at times. Things are getting better though. Hope everything works out well for you. The most important thing is to find a good doctor who is proactive with the disease and has your best interest at heart. It makes all the difference in the world and support groups like these are also invaluable. Good luck and if you have any questions, feel free to ask. Cheryle > Well here goes my name is I am 26 and live in Louisiana. I would > like to say that my beautiful wife has found this list for me and I > am very thankful. I have recently been diagnosed with Psoriatic > Arthritis well not sure if it is offical yet. I have been seeing my > family doctor about this and other issues over the past three months > and finaly today got my first appointment with my Rheumatologist he is > 99% sure this is what I have but he had me do some more blood work > today to make sure I don't have something else. I have been taking > DICLOFENAC 75 mg twice daily this was from my family doctor I have to > say it helps with the pain medication they take the edge off and if I > would miss taking it I was a no go the next day (very hard to get > around at all). Well my Rheumatologist is keeping me on this and > starting these tomorrow. METHOTREXATE 2.5 MG four tablets a day once a > week, METHYLPREDNISOLONE 4 MG one daily, FOLIC ACID 1 MG one daily. > He seems very confident these are very likly to help me a lot I have > to see him again in one month I have to do blood work and back x- rays > before seeing him again. Does anyone know about the x-rays I don't > remember if he told me why. Well I want to get any as much information > as I can on this. I just want to say a little about my self and would > like to know if everyone is like this. I have pain and stiffness in > both shoulders, elbows, knees!,wrists,hips,hands,also in my neck. Well > I think that is about it is, is everyone like this or am I lucky. I > think I will stop for now before I scare everyone off and no one will > want to reply this is my first post. I am sorry for the long message > but I don't know much and I am trying to learn everything that I can. > One more thing I usually work about 120 hours every two weeks this is > usually hard but is almost becoming impossible. Can anyone comment on > how this PA has affected there work? > > Thanks, > > [Editor's Note: Welcome, . Sorry that your illness brought you here but here is where you will find some support and experience. The treatment the rheumy has suggested (Methotrexate {aka MTX}, methylprednisolone and folic acid is probably pretty common for starting things off. I suspect you will be weaned off the methylprednisolone once your pain and stiffness get under control. While these meds may help you, please do not despair if they don't. There are many other drugs out there that help a lot of us. Personally, I continue to put in 40-50 hour weeks and I'm 54. This would not have been possible if I hadn't finally found a medication that helped me. I know you are at the point of despair - but the good news is that something out there will possibly help you feel better and once you do, working long hours may no longer seem as daunting as it does now. On the other hand, you may need to adjust your work habits because the reality is that you DO have a disease and many people with PA cannot work the kind of hours they did before PA really acted up. The xrays will be used to determine if you have already suffered measurable joint damage from the disease. If you have not, these xrays will serve as a baseline against which future xrays will be measured to determine the progression of the disease. Enough out of me. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Hello Bev, I currently have 'Bcancer' and have had 3 chemotherapy sessions so far. During my last visit, they wanted to do some CT scans first before they proceed with treatment. They also took a biopsy of my thyroid, which had enlarged since the chemo started. I am supposed to have a pet scan next week, however, I really don't know much about these different kinds of scans and exactly what they are looking for in ordering them. I was also doing a restricted diet last year - no meat, no eggs, no dairy - only raw veggies and fruits. That lasted for about 6 months and I went on a modified Gerson diet for a couple of months after that. I felt great in doing them and it actually arrested the growth of my tumor for 7-8 months (April to November)! By then, it was December and I fell off the wagon with all the Christmas party food. I had another mammogram done in February and as I already knew, the tumor had increased considerably. I started the chemo treatments in March. I too would like to get back to a healthier diet and have found it difficult to achieve the discipline I had before. They also found a " thingy " on lung from CT scan in March, but didn't want to biopsy it and wanted to see if it would disappear first with the first 3 rounds of chemo treatment. I guess it was too small to biopsy at that point and there is always the possibility of metastasis with a biopsy. The recent scans show that it is still there (but hasn't enlarged). Dolores [ ] New member > > > > Hello, > > > > I had a CT scan in January...they found a tumor in my lung...saying it was > a granuloma. > > In April my oncologist wanted another CT scan..nothing had > changed..however they took more and better pictures the second time..so > didn't have everything to compare it to..they did say there was a blood > supply..but it was too small for a PET scan or biopsy..so to rescan every > three months for the next two years.. > > I needed more info so went to see my oncologist who ordered a PET scan > last week. > > Something lit up 1.2...so he said ..it could be a granuloma...(I thought > if it lit up at all it was cancer) and if it had been a 3 or 4 he would have > it removed..but for now..he wants another CT scan exactly three months since > the last one. > > So I am waiting!!! I had Bcancer two years ago..nothing had spread nor was > it in any nodes..but I did have radiation and am on the drug femara for a > estrogen positive tumor. > > I practically became a vegan when I first learned of my BCancer and kept > it up for 1 1/2 year..then fell off the wagon..I want to go back to better > eating. > > I would like to know if any of the above rings a bell with any one and > what you make of it? > > Also I welcome a diet or website where I can learn what I need to do to > help my body cope with this and hopefully it will never develop into > anything more.. > > But must say, it is a scary thing to even have the tumor in there. > > I assume if anything grows the next step would be a biopsy. > > Perhaps I shouldn't go there yet! > > Thanks so very much. > > Bev > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Well I think I have had PA for longer than a few months but have been ingnoring the signs. You say five years did it hit you at one time or gradually get worse. I know my condition has effected my work and I am worried about that no one may say anything but I know I am not able to do what I used to. My job requires a lot standing, stepping,walking,some bending streching etc. This is for 8 to 12 hours a day. Do you think this will get better or will I have to do something else? I know now if I stand for 30 minutes I have to go sit down but then it hurts getting up this was taking my DICLOFENAC 75 mg twice daily and eating pain meds. Well I have started all my new meds. today and I few really run down and tired I guess this is normal I hope it gets better. Thanks, > -Exactly the regimen I was on. Although I stopped the > MTX after my wife had a miscarriage and have not gone > back on as I have been relatively ok since. I take the > 5mg of pred, folic, voltarin, also > glucosamine/chondraitin and 1500mg of calcium w/ vit D > everyday ( five years) we watch my bone density > because of the pred but I am able to get through the > day with only minor pains. The drugs also keep my knee > pain down from years of playing tennis professionally > and I have almost no cartilage left in my right knee. > so that is an added benefit > best to you and good days ahead > greg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 wrote: > One more thing I usually work about 120 hours every two weeks this is > usually hard but is almost becoming impossible. Can anyone comment on > how this PA has affected there work? > Welcome . You are lucky to have such a resourceful wife. I also work some long hours and it is getting progressively more difficult. I find myself getting more and more economical in my movements. I try very hard not to let it show. By " it " I mean the pain & stiffness in.....my jaw, neck, shoulders, breast bone, ribs, elbows, hands lower back, hips, knees, ankles, feet and toes. I am 54, stubborn and don't want to quit yet. I was diagnosed almost 3 years ago. I take Enbrel, Arava and am almost off of the prednisone I have been taking since November. I hate to take prednisone so hope I don't have to go back on. My life has changed a lot since diagnosis but I still find it satisfying and worthwhile. I live in the Pacific Northwest and we occasionally have conversations here about what type of weather is best for P and PA. I'd say it doesn't much matter. The only thing that seems to make a huge difference is the barometric pressure. Let us know how you do with that. Take care, Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I am from Berwick near City. Well I was wondering about insurance I have United Health Care and I know it is early but I was wondering would they cover the bio-shots because they seem expensive but work very well for everyone who takes them. I have P almost everywhere but I am using a cortisone foam Olux it burns like hell at times but does clear my skin up with twice a day regular use. I may go back to my dermatologist to see about something else because this cost me about 50 and only last about 3 weeks. This my second day on my new meds. and my doctor did sound very confident that we could find something to get me fixed up. Well I will go for now. Thanks, > Hi . My name is Cheryle and I am also from Louisiana. I was > just wondering what part of LA you are from. I live in Lake > . Welcome to the board. This is a wonderful place to gather > information, vent, etc. I was diagnosed with arthritis in my mid- > twenties (I am 38 now) but only within the last couple of years did > someone finally put the label, PA, on it. I am fortunate to have > found a wonderful rheumatologist. I have tried a lot of treatments > over the years with minimal sucess. Right now I am on 7.5mg MTX and > Humira (one injection every other week) and it seems to be working > pretty well. I am lucky not to have too much skin involvement > (elbows and scalp) but it seems that every joint on my body hurts at > times. Things are getting better though. Hope everything works out > well for you. The most important thing is to find a good doctor who > is proactive with the disease and has your best interest at heart. > It makes all the difference in the world and support groups like > these are also invaluable. Good luck and if you have any questions, > feel free to ask. > > Cheryle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 , I too was fairly young when I finally got my dx. I had recently turned 21. I had psoriasis at about 12 yrs old the actual pain didn't set in until about 16,or 17. I'm now 25. I think i'm one of the lucky ones who finally found a rheumatologist who really cared about what I was going thru and she pretty much dx'd me on the first visit and verified with the second appt. I have been on many treatments over the past four years and the Vioxx,Enbrel and Sulfasalizine had the greatest affect on my pain and inflammation. I have bad days but am having a lot of good days as well. I think the worst thing I have to deal with now is the fatigue of PA. We have just weaned off of the sulfasalizine. (I was on up to 2,000mg a day) Since begining the Enbrel, in January all my labs have since gone back to normal which I never would have imagined was even possible. Good luck and I hope that you meds do give you some relief. Keli > Well here goes my name is I am 26 and live in Louisiana. I would > like to say that my beautiful wife has found this list for me and I > am very thankful. I have recently been diagnosed with Psoriatic > Arthritis well not sure if it is offical yet. I have been seeing my > family doctor about this and other issues over the past three months > and finaly today got my first appointment with my Rheumatologist he is > 99% sure this is what I have but he had me do some more blood work > today to make sure I don't have something else. I have been taking > DICLOFENAC 75 mg twice daily this was from my family doctor I have to > say it helps with the pain medication they take the edge off and if I > would miss taking it I was a no go the next day (very hard to get > around at all). Well my Rheumatologist is keeping me on this and > starting these tomorrow. METHOTREXATE 2.5 MG four tablets a day once a > week, METHYLPREDNISOLONE 4 MG one daily, FOLIC ACID 1 MG one daily. > He seems very confident these are very likly to help me a lot I have > to see him again in one month I have to do blood work and back x- rays > before seeing him again. Does anyone know about the x-rays I don't > remember if he told me why. Well I want to get any as much information > as I can on this. I just want to say a little about my self and would > like to know if everyone is like this. I have pain and stiffness in > both shoulders, elbows, knees!,wrists,hips,hands,also in my neck. Well > I think that is about it is, is everyone like this or am I lucky. I > think I will stop for now before I scare everyone off and no one will > want to reply this is my first post. I am sorry for the long message > but I don't know much and I am trying to learn everything that I can. > One more thing I usually work about 120 hours every two weeks this is > usually hard but is almost becoming impossible. Can anyone comment on > how this PA has affected there work? > > Thanks, > > [Editor's Note: Welcome, . Sorry that your illness brought you here but here is where you will find some support and experience. The treatment the rheumy has suggested (Methotrexate {aka MTX}, methylprednisolone and folic acid is probably pretty common for starting things off. I suspect you will be weaned off the methylprednisolone once your pain and stiffness get under control. While these meds may help you, please do not despair if they don't. There are many other drugs out there that help a lot of us. Personally, I continue to put in 40-50 hour weeks and I'm 54. This would not have been possible if I hadn't finally found a medication that helped me. I know you are at the point of despair - but the good news is that something out there will possibly help you feel better and once you do, working long hours may no longer seem as daunting as it does now. On the other hand, you may need to adjust your work habits because the reality is that you DO have a disease and many people with PA cannot work the kind of hours they did before PA really acted up. The xrays will be used to determine if you have already suffered measurable joint damage from the disease. If you have not, these xrays will serve as a baseline against which future xrays will be measured to determine the progression of the disease. Enough out of me. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 , Fatigue does come with the territory of PA. I still deal with it and I am also having to work overtime at work and I know that is playing into it. Surely not helping but I really don't have a choice since we are now 3 staff members short at the time. I know that when I took DICLOFENAC it did nothing for me, prehaps they need to try another anti-imlammatory drug. Nor did a lot of others, Indocine,naprosyn, celebrex, lodine, daypro, cataflam. I know there are others but can't think to list all of them. Good luck, I know my pain began gradual, I injured my ankle at the same time I guess as all of this set in. Ended up rupturing the tendon in the ankle (it ripped right in half) had surgery and they realized something else was going on. If I can help in anyway let me know. Keli > > -Exactly the regimen I was on. Although I stopped the > > MTX after my wife had a miscarriage and have not gone > > back on as I have been relatively ok since. I take the > > 5mg of pred, folic, voltarin, also > > glucosamine/chondraitin and 1500mg of calcium w/ vit D > > everyday ( five years) we watch my bone density > > because of the pred but I am able to get through the > > day with only minor pains. The drugs also keep my knee > > pain down from years of playing tennis professionally > > and I have almost no cartilage left in my right knee. > > so that is an added benefit > > best to you and good days ahead > > greg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 , just wanted to let you know, I hear you about the Olux burning..I use it on my scalp sometimes!! BUT I wanted to let you know about what I call a miracle mix my derm gave me. Dovones, Ultravate and Aquaphor mixed up together by the Pharmacist. I am supposed to use it 2x a day, have only been doing it 1x a day though because right away my P started disappearing! It is amazing! good luck annie and the pugherd [ ] Re: New Member I am from Berwick near City. Well I was wondering about insurance I have United Health Care and I know it is early but I was wondering would they cover the bio-shots because they seem expensive but work very well for everyone who takes them. I have P almost everywhere but I am using a cortisone foam Olux it burns like hell at times but does clear my skin up with twice a day regular use. I may go back to my dermatologist to see about something else because this cost me about 50 and only last about 3 weeks. This my second day on my new meds. and my doctor did sound very confident that we could find something to get me fixed up. Well I will go for now. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2004 Report Share Posted June 19, 2004 , I was a new member a few weeks ago, so I can relate to your situation. It sounds like I am about 1 month ahead of you. My first rheumy visit was early May. I had swelling in both feet, fingers, and wrists. Sharp pains running down the arms from my shoulders. He looked me over and couldn't find any signs of psoriasis. My blood tests are positive for RA. He said he was pretty sure I had PA, and he gave me the exact same meds that you have with the exact same dosages. After a month the swelling had dissipated but I had heel pain (plantar fascitis?). With some stretching and the meds the heel pain is going away. Now, I have some ankle swelling, elbow pain, and 1 knuckle just flared up. All in all, I am much better than I was 6 weeks ago. On my second visit he was more confident that I had PA and told me to continue the meds and come back in 2 months. As far as working 60 hours a week, I would scale that back some if possible. I am very tired right after lunch. I have to get up and walk around or I won't be getting up. Even if I take a nap I am quite tired by 1030 at night. I haven't slept a night in months; evry movement awakens some sore joint. My personal feeling about PA is that it may die down but it won't be going away. We'll see. AND good luck. Bruce Floyd > Well here goes my name is I am 26 and live in Louisiana. I would > like to say that my beautiful wife has found this list for me and I > am very thankful. I have recently been diagnosed with Psoriatic > Arthritis well not sure if it is offical yet. I have been seeing my > family doctor about this and other issues over the past three months > and finaly today got my first appointment with my Rheumatologist he is > 99% sure this is what I have but he had me do some more blood work > today to make sure I don't have something else. I have been taking > DICLOFENAC 75 mg twice daily this was from my family doctor I have to > say it helps with the pain medication they take the edge off and if I > would miss taking it I was a no go the next day (very hard to get > around at all). Well my Rheumatologist is keeping me on this and > starting these tomorrow. METHOTREXATE 2.5 MG four tablets a day once a > week, METHYLPREDNISOLONE 4 MG one daily, FOLIC ACID 1 MG one daily. > He seems very confident these are very likly to help me a lot I have > to see him again in one month I have to do blood work and back x- rays > before seeing him again. Does anyone know about the x-rays I don't > remember if he told me why. Well I want to get any as much information > as I can on this. I just want to say a little about my self and would > like to know if everyone is like this. I have pain and stiffness in > both shoulders, elbows, knees!,wrists,hips,hands,also in my neck. Well > I think that is about it is, is everyone like this or am I lucky. I > think I will stop for now before I scare everyone off and no one will > want to reply this is my first post. I am sorry for the long message > but I don't know much and I am trying to learn everything that I can. > One more thing I usually work about 120 hours every two weeks this is > usually hard but is almost becoming impossible. Can anyone comment on > how this PA has affected there work? > > Thanks, > > [Editor's Note: Welcome, . Sorry that your illness brought you here but here is where you will find some support and experience. The treatment the rheumy has suggested (Methotrexate {aka MTX}, methylprednisolone and folic acid is probably pretty common for starting things off. I suspect you will be weaned off the methylprednisolone once your pain and stiffness get under control. While these meds may help you, please do not despair if they don't. There are many other drugs out there that help a lot of us. Personally, I continue to put in 40-50 hour weeks and I'm 54. This would not have been possible if I hadn't finally found a medication that helped me. I know you are at the point of despair - but the good news is that something out there will possibly help you feel better and once you do, working long hours may no longer seem as daunting as it does now. On the other hand, you may need to adjust your work habits because the reality is that you DO have a disease and many people with PA cannot work the kind of hours they did before PA really acted up. The xrays will be used to determine if you have already suffered measurable joint damage from the disease. If you have not, these xrays will serve as a baseline against which future xrays will be measured to determine the progression of the disease. Enough out of me. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2004 Report Share Posted June 19, 2004 In my case the PA has slowly been coming on for 2-3 years. I would have finger and foot pain occasionally. I've had a lot of shoulder pain over the last year and a half. Usually working the joints would get me through it, but recently mt feet and fingers blew up and walking became a mess. So, I would say based on my memory it came on slowly over 3 years. I guess I wished it would just go away, but, in retrospect it just got progressively worse. After 6 weeks of meds I am about 50% better. It really helps to get informed, and this is a pretty good place to do just that. Bruce > > -Exactly the regimen I was on. Although I stopped the > > MTX after my wife had a miscarriage and have not gone > > back on as I have been relatively ok since. I take the > > 5mg of pred, folic, voltarin, also > > glucosamine/chondraitin and 1500mg of calcium w/ vit D > > everyday ( five years) we watch my bone density > > because of the pred but I am able to get through the > > day with only minor pains. The drugs also keep my knee > > pain down from years of playing tennis professionally > > and I have almost no cartilage left in my right knee. > > so that is an added benefit > > best to you and good days ahead > > greg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 > researching some information on chelation treatments. A friend on > another site told me about this group. I would appreciate any > information or experiences (positive/negative). My general info page http://www.danasview.net/chelate.htm My son is recovered. I would estimate that 60% of his recovery was ALA chelation, the other 40% was anti-viral. Good luck. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Hi, . Glad to have you as a member of our group. Sounds like you've been through the standard progression of medicines. I have a few observations I'd like to make; I'd be happy to respond to any further questions you might have. There was a time when Indocin (indomethacin) was the Gold Standard in treating arthritis. (And the addition of a little codiene for pain would be helpful.) However, that " time " was when F. Kennedy was President of the U.S., and the Beatles had just released " I Want to Hold Your Hand " . (How old is your doc?)Indocin was one of the very first crop of NSAIDs (non-steroidal anti- inflammatory drugs), and it was quite tough on patients' stomachs. It looks like you've been on the NSAID merry-go-round, like so many patients have been. The NSAIDs all work similarly, and all have the same drawbacks--they can cause GI problems. Some people respond better to one than another, and/or have less GI distress. For what it's worth: Generally speaking, there is less stomach upset associated with the newer COX-2 inhibitor NSAIDs such as Celebrex. Regarding " Amiliryptiline " : Am I right in assuming you meant Amytriptaline? Also known as Elavil, it's a tricyclic antidepressant given to offset some of the psychological aspects of living with chronic pain, and aid sleep. Methotrexate: 25 mg. a week is the maximum recommended dose, in treating RA, and PA. Patient response tends to be closely related to dosage; If you think you could (after talking to your doc) lower your dosage for a couple weeks and see what happens. Are you feeling fatigued? Have you had mouth sores? Any other symptoms associated with methotrexate side effects? Tramadol: It's a decent painkiller. This is maybe the one thing, though, that didn't compute, for me: 25 mg. of methotrexate is on the stiff side, and generally infers a significant amount of pain. I am on 25 mg. a week of methotrexate, and I need morphine to control the pain. OR: For you, is the " P " much more the problem than the " A " , in PA? Lastly, Enbrel: This drug works wonders for certain people. I hope you get the chance to try it. It, too, however, has some very heavy duty side effects, so keep reading the literature, and quizzing your docs about your drugs. In parting: I spent a good deal of time in Wales (Cymru), particularly North Wales, many moons ago...using Ruthin Castle as HQ, so to speak, while making daily excursions to the coast, to Conwy Falls, to visit my mother's family's 'roots' in Corwen (her name was Corwin)...and also a sort of sad sight: While down south, motoring through the environs of Cardiff, seeing a huge signboard affixed to a fence. It must have been 40 feet long (or so it is in my memory!) and 5 feet high. The sign read: " Never Forget Your Welsh. " The sort of sad part: it said that fine sentiment in English... D.] > Hi all, > > I've had PA since I was 22 I'm now 30 been on all sorts of different medication. > Started on Indomethicin and codeine it eased the pain but caused me to have a hyatis hernia. Tried Celebrex, Viox and I'm now on Voltorol which probably isn't doing my stomach any good. > Also on MTX, Tramadol and Amiliryptiline. I'm on a high dose of MTX 10 tablets 2.5 once a week (does this seem high, need some advice on that). > I really want to try Enbrel but don't know if it's available where I live, I know that a consultant at the local Hospital has his RA patients on it I live in the North Wales area. > > > Bye for now > > > > > > > --------------------------------- > ALL-NEW Messenger - sooooo many all-new ways to express yourself > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi again , I can't really add anything to 's comments except to say that I agree with him especially about the right medication could enable you to work on for many years. I worked an average of 42 hours for 16 years from the PA started and didn't miss a day due to Arthritis up until about two years ago when I started to lose the odd day or would go in late as I had not slept the night before.(No sleep....12 hour shift.....working on electromechanical equipment.....bit dangerous eh?) My employers eventually advised me to take time off to try and " recover " They had advised this a couple of times already but I didn't see the point as I was probably going to be just as bad if not worse by the time I came back but this time I agreed. They asked me to give my Rheumy my job description to see what he thought. I did that and as soon as I started by saying, " Well, basically I am on my feet for 12 hrs, " he started shaking his head. " Shouldn't be doing it! " he said. So I've not been back since. My employers have been pretty good and I am on LTD now. It means that I am still an employee of the company and theoretically, I could go back if I recovered sufficiently although that is unlikely as I have no real movement in my right wrist and the left appears to be going the same way. What I am saying is.....it was the medication I was on (and shear determination I suppose) that helped me to work on.(Just don't know why I had to tell half my life story to say it!Lol) Don't know if I could have managed 120hrs a fortnight though. You may need to curtail that right enough (If that's possible) Hope it all works out for you ok. Quote Link to comment Share on other sites More sharing options...
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