Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 1 YES theres few of us here lets see Supserman AKA Army dude back in Active training ruksacking Umm my Canadian freind Patti Off all meds and off snowboarding or soon to be then theres me ive had few setbacks few flares but been doin good last 7-8 months only mini flare but i do commercail concrete finishing lots of walking involved and quite frankly im doin fine Kirk i certainly dont look out of place either (even with saying that im geussing im not quite the same i have neck pains & headaches pretty reg but usually just takes few hours in morn work kinks out then im ready to go). 2.Unlike you Kirk i had dramatic weightloss at onset went from 210lbs to 160lbs within 3-4 months then once prescribed prednisone i have ballooned up to 215lbs (tell you what i find on any dose under 10 the appetite can be controlled)that being said i think it is still much better at least for me if im in a flare to have the steroids increased to bring it under control. 3.After being diagnosed i have had 2 flares one very severe lasted month second was caught early enough with help of bloodtests sed rate was 75 increased prednisone results been it was controlled geuss be Mini-Flare So geuss no unfortunatly just cause your diagnosed doesnt mean the Dragon has been Slautered forever some go into remmission for years then have a flare i know not news you wanted to hear its basically unpredictable. 4.Ill havta say this ones over my head lol sorry but the pred should be cut carfully if you feel extra pain tell your doctor you should be cuttin back slower dont know bout the States and like you said you dont like doctors but my last flare i knew somethin was up think i went in twice so if you feel as if the cutting is causing too much pain get help somewhere its your body telling you heh Too Much Too Soon in mt opinion Also some theres usually an adjustment period 2-3 days of extra stiffness this is normal any longer and i would be concerned 5.One of the symtoms of high dose prednisone is insomnia yep i had to take sleeping pills for awhile but once i got down below 20mgs of pred i didnt need them no more good luck with this problem i can still remember months of those 2-3 hour sleeps when normally i sleep like a log. 6.Theres alot of people here on anti depressants i was and didnt even know it cause the sleeping pill i was on was acually an anti depressant You have to find something that makes you happy its hard when in constant pain so if your in pain get help find medical people who will listen and get the pain under control and express this heavily to your primary doctor 7.mine lasted for week or so after gettin the prednisone when first prescribed i was at 80mgs presently i am on 7 mgs i did get the fevers back fullforce with my 1rst flare yeah i remember them sweat soaked nights waking up cold just freezing to death vividly Kirk and i know what your goin though right now is brutal hope the pred kicks in for you and they persist. Hek i was up late anyways hope gave you few answers again these are not all easily answered questions and only general answers can be given and to predict outcome with Stills is basically like shootin dice one day at a time Kirk take care. d.Canada Questions and such I have a number of questions, and can almost guarantee many more in the future. I understand that not everyone gets the same symptoms, the same symptoms to the same degree, and that their are other variations with this disease. I know what happened to others may or may not happen to me, but I still have to ask. With that being said.......... 1) I have done a lot of reading in the last few days, and thank all who have "welcomed" me here to "this place". From what I have read, it seems that the sooner one is diagnosed, the better the results. I guess asking to be exactly as I was before is too much, but I am hoping to be close to some degree. When I think back, I had been "sick" with flu like symptoms for a couple of weeks in November and December, but it didn't stop me from working, so I ignored it. I have never been one to go to the doctors unless I had to. I used to average 3-4 visits to the doctors per year, and I already have doubled that this year to date. I guess what I am saying is that I feel I was diagnosed in pretty short order. Sorry for the ramble, my writing is usually more concise. 2) I usually eat far more than I should, but that was never really a problem due to my "hyper-active" lifestyle. Now, since my first hospital stay in January, I am already up 15 pounds, to 223. I am only 5' 6 1/2", but was in rather decent shape as a result of years of lifting and exercise. Heck, I came out of Ft. Benning Georgia @ 199 lbs, and was only 194 lbs when I joined. My appetite has suddenly left me, which could turn out to be what I need, but am afraid of what will happen if it comes back and I am on steroids. I tended to work out to prevent from becoming fat. My doctor insists that I not lift again, and running is a bad idea also. What else can I do? I realize I may need to change my diet, but do not know how well that will work. How have you dealt with this? 3) I have been "nailed" 4 times in the last three months, and am hoping to stay out of the hospital for the foreseeable future. I am hoping that now that I have been clinically diagnosed that I will be o.k. What have your experiences been? 4) My Presdinone (I may be butchering the spellings on my meds, but I am quite new to this) dosage is a declining dose. My first time on it was my after my February hospital stay, and I was on it for 8 days. I felt good until I stopped taking it, but did not quite have the same symptoms as before, so I wrote it off. I felt like "shit" essentially to this date, and wound up in the hospital again 8 days ago. I was released on Friday, and my dosage was 3 20mg pills that day, than 2 twice a day for three days, than 1 four times a day for four days than stop. I will not see my RD until 4/24, and will be off these well before this. What can I expect? 5) This question relates to the last question. Should I ask to have my Presdinone upped? I still hurt to a degree, but not bad enough to stop me. I am having a hard time relaxing, and find it hard to sleep. Is this just a normal part of the disease, or will the pres take care of it? 6) How long does it take to get over this "first hurdle"? I must admit I have been depressed in the past....not clinically depressed, but felt depressed at times....mainly in the winter which I really despise do to the lack of opportunity to do all that much. Now I am damn near ready to lose it at times, especially this last week while in the hospital. I didn't talk directly to my doctor about this, but I do think that the one nurse may have mentioned it to him as I have been put on a med that has, among other uses, been used to treat depression. I don't think it is working to well, but I am in slightly better spirits than I was while in the hospital. I have an appointment with my primary doc on Thursday. Aside from mentioning this to him, what kind of med should I be looking for? This is pending on how I feel at that time. 7) I am finding myself waking up soaked with sweat, or freezing, but have yet to have a good nights sleep. How long has this lasted for others? Sorry for chewing up a bunch of your time, I am very happy to have found this place though. Have a good day, Kirk. kbonanny@...Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 1 YES theres few of us here lets see Supserman AKA Army dude back in Active training ruksacking Umm my Canadian freind Patti Off all meds and off snowboarding or soon to be then theres me ive had few setbacks few flares but been doin good last 7-8 months only mini flare but i do commercail concrete finishing lots of walking involved and quite frankly im doin fine Kirk i certainly dont look out of place either (even with saying that im geussing im not quite the same i have neck pains & headaches pretty reg but usually just takes few hours in morn work kinks out then im ready to go). 2.Unlike you Kirk i had dramatic weightloss at onset went from 210lbs to 160lbs within 3-4 months then once prescribed prednisone i have ballooned up to 215lbs (tell you what i find on any dose under 10 the appetite can be controlled)that being said i think it is still much better at least for me if im in a flare to have the steroids increased to bring it under control. 3.After being diagnosed i have had 2 flares one very severe lasted month second was caught early enough with help of bloodtests sed rate was 75 increased prednisone results been it was controlled geuss be Mini-Flare So geuss no unfortunatly just cause your diagnosed doesnt mean the Dragon has been Slautered forever some go into remmission for years then have a flare i know not news you wanted to hear its basically unpredictable. 4.Ill havta say this ones over my head lol sorry but the pred should be cut carfully if you feel extra pain tell your doctor you should be cuttin back slower dont know bout the States and like you said you dont like doctors but my last flare i knew somethin was up think i went in twice so if you feel as if the cutting is causing too much pain get help somewhere its your body telling you heh Too Much Too Soon in mt opinion Also some theres usually an adjustment period 2-3 days of extra stiffness this is normal any longer and i would be concerned 5.One of the symtoms of high dose prednisone is insomnia yep i had to take sleeping pills for awhile but once i got down below 20mgs of pred i didnt need them no more good luck with this problem i can still remember months of those 2-3 hour sleeps when normally i sleep like a log. 6.Theres alot of people here on anti depressants i was and didnt even know it cause the sleeping pill i was on was acually an anti depressant You have to find something that makes you happy its hard when in constant pain so if your in pain get help find medical people who will listen and get the pain under control and express this heavily to your primary doctor 7.mine lasted for week or so after gettin the prednisone when first prescribed i was at 80mgs presently i am on 7 mgs i did get the fevers back fullforce with my 1rst flare yeah i remember them sweat soaked nights waking up cold just freezing to death vividly Kirk and i know what your goin though right now is brutal hope the pred kicks in for you and they persist. Hek i was up late anyways hope gave you few answers again these are not all easily answered questions and only general answers can be given and to predict outcome with Stills is basically like shootin dice one day at a time Kirk take care. d.Canada Questions and such I have a number of questions, and can almost guarantee many more in the future. I understand that not everyone gets the same symptoms, the same symptoms to the same degree, and that their are other variations with this disease. I know what happened to others may or may not happen to me, but I still have to ask. With that being said.......... 1) I have done a lot of reading in the last few days, and thank all who have "welcomed" me here to "this place". From what I have read, it seems that the sooner one is diagnosed, the better the results. I guess asking to be exactly as I was before is too much, but I am hoping to be close to some degree. When I think back, I had been "sick" with flu like symptoms for a couple of weeks in November and December, but it didn't stop me from working, so I ignored it. I have never been one to go to the doctors unless I had to. I used to average 3-4 visits to the doctors per year, and I already have doubled that this year to date. I guess what I am saying is that I feel I was diagnosed in pretty short order. Sorry for the ramble, my writing is usually more concise. 2) I usually eat far more than I should, but that was never really a problem due to my "hyper-active" lifestyle. Now, since my first hospital stay in January, I am already up 15 pounds, to 223. I am only 5' 6 1/2", but was in rather decent shape as a result of years of lifting and exercise. Heck, I came out of Ft. Benning Georgia @ 199 lbs, and was only 194 lbs when I joined. My appetite has suddenly left me, which could turn out to be what I need, but am afraid of what will happen if it comes back and I am on steroids. I tended to work out to prevent from becoming fat. My doctor insists that I not lift again, and running is a bad idea also. What else can I do? I realize I may need to change my diet, but do not know how well that will work. How have you dealt with this? 3) I have been "nailed" 4 times in the last three months, and am hoping to stay out of the hospital for the foreseeable future. I am hoping that now that I have been clinically diagnosed that I will be o.k. What have your experiences been? 4) My Presdinone (I may be butchering the spellings on my meds, but I am quite new to this) dosage is a declining dose. My first time on it was my after my February hospital stay, and I was on it for 8 days. I felt good until I stopped taking it, but did not quite have the same symptoms as before, so I wrote it off. I felt like "shit" essentially to this date, and wound up in the hospital again 8 days ago. I was released on Friday, and my dosage was 3 20mg pills that day, than 2 twice a day for three days, than 1 four times a day for four days than stop. I will not see my RD until 4/24, and will be off these well before this. What can I expect? 5) This question relates to the last question. Should I ask to have my Presdinone upped? I still hurt to a degree, but not bad enough to stop me. I am having a hard time relaxing, and find it hard to sleep. Is this just a normal part of the disease, or will the pres take care of it? 6) How long does it take to get over this "first hurdle"? I must admit I have been depressed in the past....not clinically depressed, but felt depressed at times....mainly in the winter which I really despise do to the lack of opportunity to do all that much. Now I am damn near ready to lose it at times, especially this last week while in the hospital. I didn't talk directly to my doctor about this, but I do think that the one nurse may have mentioned it to him as I have been put on a med that has, among other uses, been used to treat depression. I don't think it is working to well, but I am in slightly better spirits than I was while in the hospital. I have an appointment with my primary doc on Thursday. Aside from mentioning this to him, what kind of med should I be looking for? This is pending on how I feel at that time. 7) I am finding myself waking up soaked with sweat, or freezing, but have yet to have a good nights sleep. How long has this lasted for others? Sorry for chewing up a bunch of your time, I am very happy to have found this place though. Have a good day, Kirk. kbonanny@...Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Nicely put, . but.....I haven't seen you dance in a while, I can't cheerlead at the moment, I don't think Dan has worn his tin hat lately, Tricia can't get her boots on, Marilyn is one legged and one armed for a bit and Caroline is still CUSing..... You gotta love us, Kirk!!! We are a goofy group of all ages but stick together like glue!!! Ca. Carmen... darn.....Mi. Carmen!!!!!!! Nicely put . I agree with the dice shoot! Hello Kirk, I am , Goddess of the Full Moon, Class Clown and strivingto be number one trouble maker here. I have a lot of compition and partners in crime. Stills though we mostly all have it here { we keep a few token non Stillsers around, but we are all Stilligans} is vastly different for each of us. We find we share a lot of symptoms but are all fun with are own quirks { see Carlo, who is a victim of Chronic Unique Syndrome, if it is weird, she has gotten it.} Some of us, like me work full time and lead quite active lives, some of us have trouble getting out of bed. I currently take 6mg of prednisone a day, celexa 40 mgs at night to help with the prednisone blues. { prednisone can cause depression, it is very real and not something that many can control without medication as it is a chemical thing...not recommending we all go poppin happy pills, just repeating research info} I also take 15 mg of methotrexate { did I get that right? } once a week and some friendly ol benadryll to help shut down my wired brain. You should research the side effects of our beloved prednisone to see what you may think is in your head might actually be in your drug. We love it , we hate it, a lot of us need it. We do the dance. How is your wife dealing with all this? And the kids? My boys are 8 and 10 and need to rant about this stupid disease sometimes too. Please know that this is your safe zone. Whatever said here is sacred and safe. We don't throw anything back in anyones face and are a lovely place to scream, cry, laugh hysterically, find peace and get advice. We are a family. Welcome home. G.o.t.F. M. Massachusetts Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html The materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Nicely put, . but.....I haven't seen you dance in a while, I can't cheerlead at the moment, I don't think Dan has worn his tin hat lately, Tricia can't get her boots on, Marilyn is one legged and one armed for a bit and Caroline is still CUSing..... You gotta love us, Kirk!!! We are a goofy group of all ages but stick together like glue!!! Ca. Carmen... darn.....Mi. Carmen!!!!!!! Nicely put . I agree with the dice shoot! Hello Kirk, I am , Goddess of the Full Moon, Class Clown and strivingto be number one trouble maker here. I have a lot of compition and partners in crime. Stills though we mostly all have it here { we keep a few token non Stillsers around, but we are all Stilligans} is vastly different for each of us. We find we share a lot of symptoms but are all fun with are own quirks { see Carlo, who is a victim of Chronic Unique Syndrome, if it is weird, she has gotten it.} Some of us, like me work full time and lead quite active lives, some of us have trouble getting out of bed. I currently take 6mg of prednisone a day, celexa 40 mgs at night to help with the prednisone blues. { prednisone can cause depression, it is very real and not something that many can control without medication as it is a chemical thing...not recommending we all go poppin happy pills, just repeating research info} I also take 15 mg of methotrexate { did I get that right? } once a week and some friendly ol benadryll to help shut down my wired brain. You should research the side effects of our beloved prednisone to see what you may think is in your head might actually be in your drug. We love it , we hate it, a lot of us need it. We do the dance. How is your wife dealing with all this? And the kids? My boys are 8 and 10 and need to rant about this stupid disease sometimes too. Please know that this is your safe zone. Whatever said here is sacred and safe. We don't throw anything back in anyones face and are a lovely place to scream, cry, laugh hysterically, find peace and get advice. We are a family. Welcome home. G.o.t.F. M. Massachusetts Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html The materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Nicely put . I agree with the dice shoot! Hello Kirk, I am , Goddess of the Full Moon, Class Clown and strivingto be number one trouble maker here. I have a lot of compition and partners in crime. Stills though we mostly all have it here { we keep a few token non Stillsers around, but we are all Stilligans} is vastly different for each of us. We find we share a lot of symptoms but are all fun with are own quirks { see Carlo, who is a victim of Chronic Unique Syndrome, if it is weird, she has gotten it.} Some of us, like me work full time and lead quite active lives, some of us have trouble getting out of bed. I currently take 6mg of prednisone a day, celexa 40 mgs at night to help with the prednisone blues. { prednisone can cause depression, it is very real and not something that many can control without medication as it is a chemical thing...not recommending we all go poppin happy pills, just repeating research info} I also take 15 mg of methotrexate { did I get that right? } once a week and some friendly ol benadryll to help shut down my wired brain. You should research the side effects of our beloved prednisone to see what you may think is in your head might actually be in your drug. We love it , we hate it, a lot of us need it. We do the dance. How is your wife dealing with all this? And the kids? My boys are 8 and 10 and need to rant about this stupid disease sometimes too. Please know that this is your safe zone. Whatever said here is sacred and safe. We don't throw anything back in anyones face and are a lovely place to scream, cry, laugh hysterically, find peace and get advice. We are a family. Welcome home. G.o.t.F. M. Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Nicely put . I agree with the dice shoot! Hello Kirk, I am , Goddess of the Full Moon, Class Clown and strivingto be number one trouble maker here. I have a lot of compition and partners in crime. Stills though we mostly all have it here { we keep a few token non Stillsers around, but we are all Stilligans} is vastly different for each of us. We find we share a lot of symptoms but are all fun with are own quirks { see Carlo, who is a victim of Chronic Unique Syndrome, if it is weird, she has gotten it.} Some of us, like me work full time and lead quite active lives, some of us have trouble getting out of bed. I currently take 6mg of prednisone a day, celexa 40 mgs at night to help with the prednisone blues. { prednisone can cause depression, it is very real and not something that many can control without medication as it is a chemical thing...not recommending we all go poppin happy pills, just repeating research info} I also take 15 mg of methotrexate { did I get that right? } once a week and some friendly ol benadryll to help shut down my wired brain. You should research the side effects of our beloved prednisone to see what you may think is in your head might actually be in your drug. We love it , we hate it, a lot of us need it. We do the dance. How is your wife dealing with all this? And the kids? My boys are 8 and 10 and need to rant about this stupid disease sometimes too. Please know that this is your safe zone. Whatever said here is sacred and safe. We don't throw anything back in anyones face and are a lovely place to scream, cry, laugh hysterically, find peace and get advice. We are a family. Welcome home. G.o.t.F. M. Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 Hi Kirk, Welcome to our group.... was surprised when I read your original post and saw Wilkes-Barre, Penna. I'm not that far from you... live near Elk Mt Ski Center in northeast PA. I'm also 33 but have had Stills since I was 20. Took me almost a year to get a diagnosis. Like you, a terrible headache was one of the first symptoms I got. Unfortunately, I still have them nearly all them time. Docs have never outright admitted they are connected to the Stills but I sure know they are! What works good on the headache pain for me is Ultram (generic is tramadol) or Ultracet (same med but the Ultracet has less tramadol plus tylenol). This is kinda hard on my stomach, however, so I try not to use it that often. Don't give up on finding something that works on the pain and headaches. I wish I had been more insistent in the beginning.... maybe it would have made a difference, who knows? Another thing that helped my headaches was seeing a chiropractor but you shouldn't do this is your Stills is so active. Just something else you can keep in mind. Also, like you, I had TERRIBLE itching with my initial flare. It was especially worse if I took a bath (even a sponge bath) or shower. I literally thought I would go out of my mind with the itching. At the time, I took Seldane (which was a non-sedating anti-histamine no longer on the market). A similar, but safer, med is Zyrtec. This might work better than benadryl. Also, I've used Aveeno lotion which has oatmeal in it.... this can help relieve the itching a little, especially after a shower. Regarding the night sweats, I guess I'll agree with everyone else - had them and hated them! I used to keep several pairs of dry pajamas by the bed and change a few times a night (still have to do this occasionally). A while back, I think someone on the list mentioned sleeping with a towel underneath the sheet..... whatever you need to do to get as comfortable as possible! Are you on any other meds beside prednisone? Before I was diagnosed, one doc put me on a course of pred for 2 months but within two weeks of stopping it, I flared up big time again. Have your docs mentioned any other drugs like methotrexate (referred to here as MTX), plaquenil, etc.? If your Stills keeps flaring when you stop the pred, they will probably consider adding another med to help get the disease under control. Prednisone can cause alot of the problems you described. I was lucky that I never gained weight on pred, except for a few pounds around my waist (just enough to make all my pants too tight....lol!). Once my Stills was more controlled (no high high fevers, lower sed rate, etc.), I started physical therapy in a heated pool. I did it to regain strength and improve range of motion in my knees. Water exercise or swimming might be something for you to keep in mind. The pred also can make it hard to relax and sleep - especially at higher doses. I sometimes feel like my braining is just running constantly and won't stop! Pred can also wreak havoc with your moods - mood swings, crying, depression, restlessness. Most of these symptoms are dose-related (the higher the dose, the worse they are) which is one reason docs usually try other meds. For me, the first flare was definitely the worst. Had a few bad ones over the years but nothing like the first one. It took me about 2+ years until the Stills started coming under control, but remember it was almost a year til I was diagnosed. I've never gotten back to "normal" but do ok. My biggest problems have been fatigue and the headaches with some joint problems and muscle pain from time to time. Since we don't live that far apart, do you mind if I ask if you see any local doctors in the Scranton-WB area? And, do you like them? My present docs are all right (I see an internist, rheumy, and neurologist) but am always on the lookout for a great doc! Sorry to be so long-winded and hope I didn't repeat alot of what other people told you. Headaches have been bad this week, so I've had to skim alot of the posts. Trish in PA Questions and such I have a number of questions, and can almost guarantee many more in the future. I understand that not everyone gets the same symptoms, the same symptoms to the same degree, and that their are other variations with this disease. I know what happened to others may or may not happen to me, but I still have to ask. With that being said.......... 1) I have done a lot of reading in the last few days, and thank all who have "welcomed" me here to "this place". From what I have read, it seems that the sooner one is diagnosed, the better the results. I guess asking to be exactly as I was before is too much, but I am hoping to be close to some degree. When I think back, I had been "sick" with flu like symptoms for a couple of weeks in November and December, but it didn't stop me from working, so I ignored it. I have never been one to go to the doctors unless I had to. I used to average 3-4 visits to the doctors per year, and I already have doubled that this year to date. I guess what I am saying is that I feel I was diagnosed in pretty short order. Sorry for the ramble, my writing is usually more concise. 2) I usually eat far more than I should, but that was never really a problem due to my "hyper-active" lifestyle. Now, since my first hospital stay in January, I am already up 15 pounds, to 223. I am only 5' 6 1/2", but was in rather decent shape as a result of years of lifting and exercise. Heck, I came out of Ft. Benning Georgia @ 199 lbs, and was only 194 lbs when I joined. My appetite has suddenly left me, which could turn out to be what I need, but am afraid of what will happen if it comes back and I am on steroids. I tended to work out to prevent from becoming fat. My doctor insists that I not lift again, and running is a bad idea also. What else can I do? I realize I may need to change my diet, but do not know how well that will work. How have you dealt with this? 3) I have been "nailed" 4 times in the last three months, and am hoping to stay out of the hospital for the foreseeable future. I am hoping that now that I have been clinically diagnosed that I will be o.k. What have your experiences been? 4) My Presdinone (I may be butchering the spellings on my meds, but I am quite new to this) dosage is a declining dose. My first time on it was my after my February hospital stay, and I was on it for 8 days. I felt good until I stopped taking it, but did not quite have the same symptoms as before, so I wrote it off. I felt like "shit" essentially to this date, and wound up in the hospital again 8 days ago. I was released on Friday, and my dosage was 3 20mg pills that day, than 2 twice a day for three days, than 1 four times a day for four days than stop. I will not see my RD until 4/24, and will be off these well before this. What can I expect? 5) This question relates to the last question. Should I ask to have my Presdinone upped? I still hurt to a degree, but not bad enough to stop me. I am having a hard time relaxing, and find it hard to sleep. Is this just a normal part of the disease, or will the pres take care of it? 6) How long does it take to get over this "first hurdle"? I must admit I have been depressed in the past....not clinically depressed, but felt depressed at times....mainly in the winter which I really despise do to the lack of opportunity to do all that much. Now I am damn near ready to lose it at times, especially this last week while in the hospital. I didn't talk directly to my doctor about this, but I do think that the one nurse may have mentioned it to him as I have been put on a med that has, among other uses, been used to treat depression. I don't think it is working to well, but I am in slightly better spirits than I was while in the hospital. I have an appointment with my primary doc on Thursday. Aside from mentioning this to him, what kind of med should I be looking for? This is pending on how I feel at that time. 7) I am finding myself waking up soaked with sweat, or freezing, but have yet to have a good nights sleep. How long has this lasted for others? Sorry for chewing up a bunch of your time, I am very happy to have found this place though. Have a good day, Kirk. kbonanny@...Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 Hi Kirk, Welcome to our group.... was surprised when I read your original post and saw Wilkes-Barre, Penna. I'm not that far from you... live near Elk Mt Ski Center in northeast PA. I'm also 33 but have had Stills since I was 20. Took me almost a year to get a diagnosis. Like you, a terrible headache was one of the first symptoms I got. Unfortunately, I still have them nearly all them time. Docs have never outright admitted they are connected to the Stills but I sure know they are! What works good on the headache pain for me is Ultram (generic is tramadol) or Ultracet (same med but the Ultracet has less tramadol plus tylenol). This is kinda hard on my stomach, however, so I try not to use it that often. Don't give up on finding something that works on the pain and headaches. I wish I had been more insistent in the beginning.... maybe it would have made a difference, who knows? Another thing that helped my headaches was seeing a chiropractor but you shouldn't do this is your Stills is so active. Just something else you can keep in mind. Also, like you, I had TERRIBLE itching with my initial flare. It was especially worse if I took a bath (even a sponge bath) or shower. I literally thought I would go out of my mind with the itching. At the time, I took Seldane (which was a non-sedating anti-histamine no longer on the market). A similar, but safer, med is Zyrtec. This might work better than benadryl. Also, I've used Aveeno lotion which has oatmeal in it.... this can help relieve the itching a little, especially after a shower. Regarding the night sweats, I guess I'll agree with everyone else - had them and hated them! I used to keep several pairs of dry pajamas by the bed and change a few times a night (still have to do this occasionally). A while back, I think someone on the list mentioned sleeping with a towel underneath the sheet..... whatever you need to do to get as comfortable as possible! Are you on any other meds beside prednisone? Before I was diagnosed, one doc put me on a course of pred for 2 months but within two weeks of stopping it, I flared up big time again. Have your docs mentioned any other drugs like methotrexate (referred to here as MTX), plaquenil, etc.? If your Stills keeps flaring when you stop the pred, they will probably consider adding another med to help get the disease under control. Prednisone can cause alot of the problems you described. I was lucky that I never gained weight on pred, except for a few pounds around my waist (just enough to make all my pants too tight....lol!). Once my Stills was more controlled (no high high fevers, lower sed rate, etc.), I started physical therapy in a heated pool. I did it to regain strength and improve range of motion in my knees. Water exercise or swimming might be something for you to keep in mind. The pred also can make it hard to relax and sleep - especially at higher doses. I sometimes feel like my braining is just running constantly and won't stop! Pred can also wreak havoc with your moods - mood swings, crying, depression, restlessness. Most of these symptoms are dose-related (the higher the dose, the worse they are) which is one reason docs usually try other meds. For me, the first flare was definitely the worst. Had a few bad ones over the years but nothing like the first one. It took me about 2+ years until the Stills started coming under control, but remember it was almost a year til I was diagnosed. I've never gotten back to "normal" but do ok. My biggest problems have been fatigue and the headaches with some joint problems and muscle pain from time to time. Since we don't live that far apart, do you mind if I ask if you see any local doctors in the Scranton-WB area? And, do you like them? My present docs are all right (I see an internist, rheumy, and neurologist) but am always on the lookout for a great doc! Sorry to be so long-winded and hope I didn't repeat alot of what other people told you. Headaches have been bad this week, so I've had to skim alot of the posts. Trish in PA Questions and such I have a number of questions, and can almost guarantee many more in the future. I understand that not everyone gets the same symptoms, the same symptoms to the same degree, and that their are other variations with this disease. I know what happened to others may or may not happen to me, but I still have to ask. With that being said.......... 1) I have done a lot of reading in the last few days, and thank all who have "welcomed" me here to "this place". From what I have read, it seems that the sooner one is diagnosed, the better the results. I guess asking to be exactly as I was before is too much, but I am hoping to be close to some degree. When I think back, I had been "sick" with flu like symptoms for a couple of weeks in November and December, but it didn't stop me from working, so I ignored it. I have never been one to go to the doctors unless I had to. I used to average 3-4 visits to the doctors per year, and I already have doubled that this year to date. I guess what I am saying is that I feel I was diagnosed in pretty short order. Sorry for the ramble, my writing is usually more concise. 2) I usually eat far more than I should, but that was never really a problem due to my "hyper-active" lifestyle. Now, since my first hospital stay in January, I am already up 15 pounds, to 223. I am only 5' 6 1/2", but was in rather decent shape as a result of years of lifting and exercise. Heck, I came out of Ft. Benning Georgia @ 199 lbs, and was only 194 lbs when I joined. My appetite has suddenly left me, which could turn out to be what I need, but am afraid of what will happen if it comes back and I am on steroids. I tended to work out to prevent from becoming fat. My doctor insists that I not lift again, and running is a bad idea also. What else can I do? I realize I may need to change my diet, but do not know how well that will work. How have you dealt with this? 3) I have been "nailed" 4 times in the last three months, and am hoping to stay out of the hospital for the foreseeable future. I am hoping that now that I have been clinically diagnosed that I will be o.k. What have your experiences been? 4) My Presdinone (I may be butchering the spellings on my meds, but I am quite new to this) dosage is a declining dose. My first time on it was my after my February hospital stay, and I was on it for 8 days. I felt good until I stopped taking it, but did not quite have the same symptoms as before, so I wrote it off. I felt like "shit" essentially to this date, and wound up in the hospital again 8 days ago. I was released on Friday, and my dosage was 3 20mg pills that day, than 2 twice a day for three days, than 1 four times a day for four days than stop. I will not see my RD until 4/24, and will be off these well before this. What can I expect? 5) This question relates to the last question. Should I ask to have my Presdinone upped? I still hurt to a degree, but not bad enough to stop me. I am having a hard time relaxing, and find it hard to sleep. Is this just a normal part of the disease, or will the pres take care of it? 6) How long does it take to get over this "first hurdle"? I must admit I have been depressed in the past....not clinically depressed, but felt depressed at times....mainly in the winter which I really despise do to the lack of opportunity to do all that much. Now I am damn near ready to lose it at times, especially this last week while in the hospital. I didn't talk directly to my doctor about this, but I do think that the one nurse may have mentioned it to him as I have been put on a med that has, among other uses, been used to treat depression. I don't think it is working to well, but I am in slightly better spirits than I was while in the hospital. I have an appointment with my primary doc on Thursday. Aside from mentioning this to him, what kind of med should I be looking for? This is pending on how I feel at that time. 7) I am finding myself waking up soaked with sweat, or freezing, but have yet to have a good nights sleep. How long has this lasted for others? Sorry for chewing up a bunch of your time, I am very happy to have found this place though. Have a good day, Kirk. kbonanny@...Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 A belated " Hello! " Kirk, I've had Stills on and off since I was a kid, but only got the dx about 5 years ago. I'm in remission though, and I'm not on the boards much any more. But some us do win battles, even the war! > > 1) Sorry for the ramble, my writing is usually more concise. Welcome to the world of Prednisone! > 2) . My doctor insists that I not lift again, and running is a bad idea also. What else can I do? I realize I may need to change my diet, but do not know how well that will work. How have you dealt with this? Exercises have to be easy on the joints. Swimming is always suggested. I try to walk and bike, but I still weigh 70 lbs (Yikes!) more than I did when I got sick, and I've been of the pred for years now. Apparently, I don't deal with it well:) > 3) I have been " nailed " 4 times in the last three months, and am hoping to stay out of the hospital for the foreseeable future. I am hoping that now that I have been clinically diagnosed that I will be o.k. What have your experiences been? FOr me, getting the dx was about 1/3 rd of the battle. 1/2 of the battle was finding a decent Rheumy, and the rest was just luck. > 4) I was released on Friday, and my dosage was 3 20mg pills that day, than 2 twice a day for three days, than 1 four times a day for four days than stop. I will not see my RD until 4/24, and will be off these well before this. What can I expect? Other people probably remember this better than I do, but Prednisone is a love-hate thing with us. I was on it for a much longer period than you are, and when I dropped as little as a half a milligram, my body would rebel. I always had to plan my cut-down days in advance. > 5) This question relates to the last question. Should I ask to have my Presdinone upped? I still hurt to a degree, but not bad enough to stop me. I am having a hard time relaxing, and find it hard to sleep. Is this just a normal part of the disease, or will the pres take care of it? For me, insomnia was a side effect of the Prednisone. Other people have had the same trouble to. I had to take Ambien for a little while. > 6) How long does it take to get over this " first hurdle " ? I must admit I have been depressed in the past....not clinically depressed, but felt depressed at times....mainly in the winter which I really despise do to the lack of opportunity to do all that much. Now I am damn near ready to lose it at times, especially this last week while in the hospital. I didn't talk directly to my doctor about this, but I do think that the one nurse may have mentioned it to him as I have been put on a med that has, among other uses, been used to treat depression. I don't think it is working to well, but I am in slightly better spirits than I was while in the hospital. I have an appointment with my primary doc on Thursday. Aside from mentioning this to him, what kind of med should I be looking for? This is pending on how I feel at that time. Take all the anti-depressants you can get. The prednisone also has a depressive effect, as does the disease itself. You've got enough demons to fight. I was on the anti-depressants for years, but mw I'm off and I'm fine. I'd do them again to get through another bout...in a New York second. > 7) I am finding myself waking up soaked with sweat, or freezing, but have yet to have a good nights sleep. How long has this lasted for others? I only do that when I'm in a flare. If you're still doing that, I'm surprised that the Prednisone is being reduced already. It's been so long, but I think that was one of the first symptoms to disappear. Good luck, and welcome aboard. They're good people here. Thornton Quote Link to comment Share on other sites More sharing options...
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