Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 At 11:43 PM 5/13/02 -0700, Stacie wrote: hi all me again once again i need advice about my dad he wants to kill himself says he has no perpus in life Dear Stacie, Day to day living with difficult emotions makes life seem somewhat unbearable. But, from what we all can see, you are capable of taking the bull by the horns and working out whatever problems you are faced with. I think that your Dad is going through one of these difficult times. It is hard for any grown man or woman to be knocked down a few pegs by health. I had a lot of anger about it when it first happened to me with by-pass surgery...........and even to this day I have resentment in my heart for all the things that have gone wrong since. But the point is, it is is OK to look at these things and get a little angry, and then put them away and go on with living. After all, there could be wonderful things ahead that we are not even aware of. Be patient with your Dad - I would just make sure he knows that you are there with him and know how he feels. I wouldn't get on his case when he threatens suicide. He is letting go of a lot of emotions. If you feel at some point that he may no longer be responsible for his actions, call 911 or get a friend or neighbor to help you. I believe in our heavenly Father, and most everyday I pray. It seems that one of my own personal requests is for God to help me to quit focusing on myself and my problems and focus on others. God doesn't always answer our prayers right away or the way we want them answered, but we must not give up and keep on asking. Do you remember the old saying " The squeaky wheel gets the oil " . So ask God to help you and to help your Father get through these tuff days. Take care, Stacie Tom in PA ------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 , I have fibromyalgia, and I too am still looking for help with fatigue. Sleep helps, I do take vitamins, but just a multi-vitamin and some calcium. When I start feeling very fatigued, I listen to my body closer. When my body says I'm tired, I do what I can to rest. Not always possible, but I cancel extra things that may interfere. need advice To all that have Fibromyalgia or Chronic Fatigue Syndrome,,, Is there anything that one can take (besides vitamins) to help with the chronic fatigue??? Not looking for medical advice, just if you tried somthing and if it helps??? Thanks ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick Community Message Archives and Digest Attachment Pictures:- /messages Chat:- Scheduled Daily Chats at /chat Bookmarks:- Add a website URL you have found useful. /links Personal Complaints or problems:- Please contact a moderator email: -owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into groups at your convenience and receive no email. To modify your subscription settings please visit:- /join To subscribe or unsubscribe please email:- -subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~ When nothing is sure, everything is possible. --- Margaret Drabble ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Thank You! I find my problem is more of getting every day things done. I just cant muster up enough energy to do things that desperately need to be done. I already take vitamins but that dosnt help. Any one with any advice I would much appreciate it. RE: need advice ,I have fibromyalgia, and I too am still looking for help with fatigue.Sleep helps, I do take vitamins, but just a multi-vitamin and somecalcium. When I start feeling very fatigued, I listen to my bodycloser. When my body says I'm tired, I do what I can to rest. Notalways possible, but I cancel extra things that may interfere. -----Original Message-----From: missymelanie2002 [mailto:missymelanie@...] Sent: Monday, September 09, 2002 12:23 PM Subject: need adviceTo all that have Fibromyalgia or Chronic Fatigue Syndrome,,,Is there anything that one can take (besides vitamins) to help with the chronic fatigue??? Not looking for medical advice, just if you tried somthing and if it helps???Thanks~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list youreceive.2) Daily Digest - sends you 25 messages in one single email for you tobrowse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at yourconvenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 I hear you! I have to really take a lot of breaks, or I just can't really accomplish things. Sorry I can't be of more help, if you find anything, let me know!! Mays Group Owner "People helping people" handd1@... www./ Add this card to your address book --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.385 / Virus Database: 217 - Release Date: 9/4/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Will do, I saw somewhere about Virgin Coconut Oil, but Im so leary about this stuff I dont want to spend money untill I hear from someone that it worked for them! RE: need advice I hear you! I have to really take a lot of breaks, or I just can't really accomplish things. Sorry I can't be of more help, if you find anything, let me know!! Mays Group Owner "People helping people" handd1@... www./ Add this card to your address book ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Hello , In 40 years I haven't found anything yet... ( I was put back on Plaquanil for my Lupus being out of remission and it Does seem to be starting to help the over all pain not too be so bad!!! I still have the aches and fatigue, but the intolerable pain is finally lessing ) lots of folks have different ways that they say help them... Some use drugs, some walk, some exercise, some do water arobics everyone is different with this nasty thing ( ((( Pain Free Hugs ))) Helen To all that have Fibromyalgia or Chronic Fatigue Syndrome,,, Is there anything that one can take (besides vitamins) to help with the chronic fatigue??? Not looking for medical advice, just if you tried somthing and if it helps??? Thanks <center> Signature Creations by PANDORASBOX8 </center> If there is a Download with this email, DO NOT OPEN IT ! Please notify Me !!! Thank-You Helen angelbear1129@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Thanks for the advice Helen!! I have got most of the intolerable pain in control most of the time, Its just this fatigue, I tried exercising but it really didn't help with the fatigue and I don't know about other people but I found it to make my pain worse (which I found really odd cause most people say that exercise is supposed to be good for the pain??) I'm just odd I guess. Again thank you!! Re: need advice Hello , In 40 years I haven't found anything yet... ( I was put back on Plaquanil for my Lupus being out of remission and it Does seem to be starting to help the over all pain not too be so bad!!! I still have the aches and fatigue, but the intolerable pain is finally lessing ) lots of folks have different ways that they say help them... Some use drugs, some walk, some exercise, some do water arobics everyone is different with this nasty thing ( ((( Pain Free Hugs ))) Helen To all that have Fibromyalgia or Chronic Fatigue Syndrome,,,Is there anything that one can take (besides vitamins) to help with the chronic fatigue??? Not looking for medical advice, just if you tried somthing and if it helps???Thanks <center> Signature Creations by PANDORASBOX8 </center> If there is a Download with this email, DO NOT OPEN IT !Please notify Me !!!Thank-YouHelenangelbear1129@... ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 a, a few years ago I was in the exact same place but not trying to deal with a pain clinic. I did end up going into the hospital psychiatric ward for treatment. It helped a lot. I can feel your frustration and pain and I hug you. Sometimes you have to do whatever it takes for them to listen to you. They do not have to understand but they do need to listen to your suffering. Biggest hugs and courage, thinking of you, Pattymelt Need Advice > I have so much to write but yet it's hard to begin. I will try to cut > out minor details to keep it short. I went out on disability > mid-February. At the time I was having problems with the pain from > Stills, high blood pressure and thyroid problems. I had so many Dr. > appointments my boss started to complain about all my > appointments, plus that was during the time Norman had had his knee > replacement surgery and I had to take him to therapy and I ended up > getting very depressed. The last 6 months I have had a lot of > depression. Back in December I went to my doctor and told him I was > getting more depressed and he increased the prozac dosage, which > helped for a few weeks but then I got more depressed again. My doctor > approved my disability so I could go to all my appointments and not > have to worry about my job. He referred me to a pain clinic. I > called for an appointment and first had to be seen by a doctor at the > hospital to approve my going to the pain clinic. They gave me the > approval and I made an appointment and they had me see the > clinicpsychologist first. He told me he didn't think my insurance > would cover my going through the program because approximately 5 years > ago I went through a program at a different pain clinic, which has > since closed down because the head doctor retired. I don't understand > this. Anyway, I talked to this guy for about an hour and he seemed > very concerned about my depression and had me make an appointment to > come back and see the other clinic psychologist,since he couldn't take > on anymore patients. I saw her a week later and told her I am getting > more depressed and frustrated because no one seems to be doing > anything about my pain. I feel like no one is listening to me! I > hurt and I'm tired of it. I'm tired of leaving work everyday in tears > because the pain is so bad. I'm back to work now and in the same > situation I was before, nothing has changed. She said on the 31st of > March I will see the nurse practitioner at the pain clinic and I will > start seeing them for all my medication instead of my regular doctor. > I tried to get in to see my rheumatologist but he didn't have an > opening until May 7th. I feel like crying and screaming " why isn't > anyone listening to me, I hurt " ! While I was out on disability I had > a headache for 5 days straight. I tried Oxycodone and had 2 imitrex > injections over a 5 day period and nothing helped. I honestly thought > I was going to drop dead of an aneurysm. I am beginning to feel > resentful of healthy people. I want everyone to feel the pain that I > feel so they will know what I am talking about. I want to go to the > hospital and tell them I refuse to leave until someone helps me. I > don't know what to do anymore. I feel like why am I having to suffer > like this. This group has always been there for me and now I feel > more depressed than ever. My rash probably came back due to stress. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 Dear a, I hear you, I hear you but I don't have a concrete answer for you. It's like *no one* understands the pain we experience! It might sound cruel, but I can't count the number of times I have wished for a doctor, a relative, some friend, could walk (or try to) in my shoes for two weeks. At this point, most of my pain is under control. (I still have some rough times though) My sanity was in jepordy before my knee, and shoulder replacements. I can only *imagine* how some of you can stand the pain every day. It got to the point where I did threaten suicide. You *have* to get some relief somehow. a, I do feel that you have been under a great deal of stress. Whether that is the cause of the rash or not, I do not know...but, even itching can drive a person up the walls. It's only normal to feel some resentment towards healthy people. You do need to see a good Rhuematologist. I got tired of the one I had for so many years, because when I'd tell him how sick I felt, he's just sigh, and look bored...and anyway, I finally stood up for myself. I called The Mayo Clinic and have seen a Rhuematologist there. I have my second appointment April 14 th. As you live in Minnesota, have you thought of seeing a doctor at The Mayo Clinic? Perhaps you would get some comfort and peace of mind. There are some very kind compassionate doctor's there. ((((((((((((((((((((((((((a)))))))))))))))))))))))))))))) A big hug for you, ~tricia~ Wisconsin ************************************************************************** -- Need Advice I have so much to write but yet it's hard to begin. I will try to cut out minor details to keep it short. I went out on disability mid-February. At the time I was having problems with the pain from Stills, high blood pressure and thyroid problems. I had so many Dr. appointments my boss started to complain about all my appointments, plus that was during the time Norman had had his knee replacement surgery and I had to take him to therapy and I ended up getting very depressed. The last 6 months I have had a lot of depression. Back in December I went to my doctor and told him I was getting more depressed and he increased the prozac dosage, which helped for a few weeks but then I got more depressed again. My doctor approved my disability so I could go to all my appointments and not have to worry about my job. He referred me to a pain clinic. I called for an appointment and first had to be seen by a doctor at the hospital to approve my going to the pain clinic. They gave me the approval and I made an appointment and they had me see the clinicpsychologist first. He told me he didn't think my insurance would cover my going through the program because approximately 5 years ago I went through a program at a different pain clinic, which has since closed down because the head doctor retired. I don't understand this. Anyway, I talked to this guy for about an hour and he seemed very concerned about my depression and had me make an appointment to come back and see the other clinic psychologist,since he couldn't take on anymore patients. I saw her a week later and told her I am getting more depressed and frustrated because no one seems to be doing anything about my pain. I feel like no one is listening to me! I hurt and I'm tired of it. I'm tired of leaving work everyday in tears because the pain is so bad. I'm back to work now and in the same situation I was before, nothing has changed. She said on the 31st of March I will see the nurse practitioner at the pain clinic and I will start seeing them for all my medication instead of my regular doctor. I tried to get in to see my rheumatologist but he didn't have an opening until May 7th. I feel like crying and screaming " why isn't anyone listening to me, I hurt " ! While I was out on disability I had a headache for 5 days straight. I tried Oxycodone and had 2 imitrex injections over a 5 day period and nothing helped. I honestly thought I was going to drop dead of an aneurysm. I am beginning to feel resentful of healthy people. I want everyone to feel the pain that I feel so they will know what I am talking about. I want to go to the hospital and tell them I refuse to leave until someone helps me. I don't know what to do anymore. I feel like why am I having to suffer like this. This group has always been there for me and now I feel more depressed than ever. My rash probably came back due to stress. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 So true a, if I had had insurance or someone to listen to my pain I would not have ended up so desperate. It is truly sad when a person cannot find help. Especially when your in that place you don't even know where to turn or who to call. I hope you can find the right support from a doctor and some medication for the pain. My understanding is with you. Let me know any time you wish a visit. Pattymelt ----- Original Message ----- From: " a " > See Patty, that proves my point. Weren't you frustrated that they paid more > attention to your depression rather than your pain? I wouldn't be so > depressed and need psychiatric care if they would just stop the pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 Dear a, I just wanted you to know that my heart and thoughts are with you. Sometimes this pain is so bad and it is so frustrating not to get the help you so desperately seek. I hope some of the advice from others here is helpful (i may try it myself!) . with love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 In a message dated 3/26/03 6:27:52 PM Pacific Standard Time, klhx3@... writes: > a good blood sugar is 60-120 even aftering fasting for eight hours. Thanks, , had not been fasting for this test which is what is puzzling me. My blood sugar gets too low (I get symptoms) when it is below 70. So, I'm wondering if this is an ongoing problem is having. We drew the blood about 3:30 in the afternoon, and he had a normal eating day beforehand. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Wow Sandi, That IgA is a great value!!! Did you do the IgG subclasses ?(he could have selective antibody deficiency)--but they can treat that! Don't know anything about the Blood sugar because we always do a fasting blood sugar. I am so glad that the IgA is within normal limits. Did they do a saliva test to make sure he has secretory IgA? --Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Sandi: Congratulations! It's my understanding that illness doesn't affect the numbers " that " much, so be happy at least something has come up. I stood in your shoes so I know that right now you don't trust the tests. I found it very hard to believe any time any numbers came up, it was like, " yeah, that's great but why is she still sick then " . But eventually I came to accept what a great thing it was and that little by little, maybe things are improving and if there are still deficiencies somewhere, at least here's one or two things that are improving. Hurrah! That said, I'm wondering about 's polysaccharide antibodies, considering his history of sinus infections. Have they checked the pneumo antibodies lately? I'd say with an IgA that far into the normal zone, you don't have to worry that the results are affected by illness or even a reaction to the antiserum. No, it just sounds great! The IgG isn't stunningly wonderful but at least it's in the normal range. 's IgG, when it came up to the low 500s, I have to say she wasn't any healthier than she had been previously. But it was nice to know I didn't have to be SO paranoid about disease, as hopefully those are enough " gamma armies " to protect her. BUT I know you are probably thinking what I thought before (did they mix up the results with somebody else's???), and it's hard to believe. (mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 In a message dated 3/26/03 8:00:14 PM Pacific Standard Time, K979@... writes: > Did they do a saliva test to make > sure he has secretory IgA? Martha, was telling me that this wasn't necessary, but I think it was. What would this test specifically tell us? I'm not sure what the difference is between the saliva and the blood?? They did not test Ig subclasses--because we were all expecting the problem to be IgA!!! Leave it to Bri to surprise everyone. Now, we need the subclasses when he's not infected. I am a little suspicious of total IgG being 566 with an infection. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 In a message dated 3/26/03 9:46:29 PM Pacific Standard Time, bunneegirl@... writes: > BUT I know you are probably thinking what I thought before (did they mix up > the results with somebody else's???), and it's hard to believe. So true--because I have seen a decline in 's overall health. Part of this could be due to his heart and needing a valve. But he still gets sinus and ear infections as often, there has been no improvement. I am a little suspicious of the 566 total Ig number--I would like to know what the subclasses are. If you were me, would you push for further testing? The polysaccharide antibody test is a good idea, it has not been done. Thanks!! Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Hi Sandi, Some people make IgA and it is present in the blood but for some reason they have below normal values in the saliva and mucous where it can help them. So that is still IgA deficiency. You may also want to have them check his pneumoccocal titers to see whether he shows a response to the polysaccharide coated bacteria. The IgG subclasses are done to see if he has a low value in one of the subclasses. --Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 > > IgA: 86 normal 37--196 > Total IgG 566 normal 510--1360 > Blood sugar was 57. Hi there Sandi, That is great news about the IGA as it may appear that there is help for you now!!!! Thank God you pushed for the testing!!!! I know every lab has different values as to what is normal and question if they go by age or by weight or what as my labs normal level at Childrens is 694 and up for and they are the same age! Not to make you any more concerned at this point then you already are. Me, personally, I would push for more. As even though he shows within normal according to them, clinically he is not doing so great.As some things could be due to his heart, the weight concerns me also as my son is 10 lbs more and I think he is tiny!! My son's levels are below normal(608) but his subclasses within normal range and he's relatively ok. I would definitely check that out and the pneumo as well. So basically you need to see if the troops are sleeping or not and go from there. Looks like you may have more options available to you than you thought!!!! That would be so good for you guys if you could get the IVIG as I know you wanted to get it if you could. made it thru the 5 days of Cipro ok!!!! Yea !!! Now we are the count down for the testing next week, praying he stays healthy enough to get there!!> His nose is still quite runny which doesn't give me much hope as that may just invite more critters in (not to mention not being on the Cipro long enough) but will just have to wait and see. So he is now officially off all his meds except his ADHD med. Keeping my fingers crossed and praying for you guys!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 , Thanks!! That's interesting!! If had the test done at your lab, his numbers would be low!! At this point, I was fully expecting something to come back and be very apparent, but 's not going to make this easy of course Being and all. He's easy in every other way, but medically, he has to be in the 1%!! I am a little suspicious of that normal but low IgG number. His heart is making him tired, I think. Also I didn't like his blood sugar, he was not fasting--the test was at about 2:30 in the afternoon and he had eaten breakfast, snacks and lunch!! That could account for some of his tiredness. As for the infections, his heart is not much of a factor in that, so we'll see what they come up with. Please pray that is going to let me push harder on this. Maybe he will, he's the one who adamantly told me all of these years that Bri had an IgA deficiency. Maybe he'll want to know what's happening!!!!!! I'm glad is better. Good old Cipro works for me every time. Do you use Ocean spray to rinse out his sinuses. I find this is a good compromise to full washes, and it might help keep the bacteria from re-growing for a while?? If you read the directions on the back, you see that tipping the head back (or laying down) will actually send a stream of it through he sinuses--rather than just a little spray. It has helped my sinuses stay clear now for months. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 , Thanks for the information about blood sugar. I also have low blood sugar, so it helps a little. is very small for his age, so it doesn't surprise me. However, he eats all of the time!!! Sandi--Mom to , age 10. Immune Deficiency of unknown origin, Tetrology of Fallot, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. Heart surgery pending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Dearest LYNN,so sorry to read that you are feeling pain. My doctors have been very careful with the use of prednisone and they always remind me that 10 % can be deduced each week whenever I wish to cut it down very fast. After 20 mg they asked me to go 18-16-14-12 and after 10 mg I will decrease 1 mg each week. Please take good care of yourself...If you wish, I can ask the pain to the doctors here ..but they suggested my taking naproxen sodium when I complained about the pain two weeks ago. Hugs and kissesYou will get better soon...PS: my experience tells me that keeping the sore muscles and aching bones warm helps a lot.EugenieFrom: Lynn D [mailto: ldudette@...]stillsdisease@...: Tue, 23 Sep 2003 09:49:42 -0500Subject: Need adviceHi my nonvegas pals.My doctor has had me tapering off the prednisone. I got down to 10 mg from 20 mg with some pain and I have had constant pain at 10. She then wanted me to drop to 5 mg after 14 days at 10. Well, I was not doing that. after about 16 days I dropped to 7.5 and now I am in so much pain. My whole body it hurting, every joint and my costo is pretty painful. I don't see any of my new doctors here in Wisconsin until October when my new health plan takes effect. I could take pain pills to get thru this but should I be having this much pain, I am tempted to just take a couple prednisone, except I am so frustrated with the weight thing also. Any comments would be appreciated based on your experience, not looking for medical advice.Lynn Dudenhoeferldudette@...---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.520 / Virus Database: 318 - Release Date: 9/18/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Dearest LYNN,so sorry to read that you are feeling pain. My doctors have been very careful with the use of prednisone and they always remind me that 10 % can be deduced each week whenever I wish to cut it down very fast. After 20 mg they asked me to go 18-16-14-12 and after 10 mg I will decrease 1 mg each week. Please take good care of yourself...If you wish, I can ask the pain to the doctors here ..but they suggested my taking naproxen sodium when I complained about the pain two weeks ago. Hugs and kissesYou will get better soon...PS: my experience tells me that keeping the sore muscles and aching bones warm helps a lot.EugenieFrom: Lynn D [mailto: ldudette@...]stillsdisease@...: Tue, 23 Sep 2003 09:49:42 -0500Subject: Need adviceHi my nonvegas pals.My doctor has had me tapering off the prednisone. I got down to 10 mg from 20 mg with some pain and I have had constant pain at 10. She then wanted me to drop to 5 mg after 14 days at 10. Well, I was not doing that. after about 16 days I dropped to 7.5 and now I am in so much pain. My whole body it hurting, every joint and my costo is pretty painful. I don't see any of my new doctors here in Wisconsin until October when my new health plan takes effect. I could take pain pills to get thru this but should I be having this much pain, I am tempted to just take a couple prednisone, except I am so frustrated with the weight thing also. Any comments would be appreciated based on your experience, not looking for medical advice.Lynn Dudenhoeferldudette@...---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.520 / Virus Database: 318 - Release Date: 9/18/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Lynn, That sounds like a " too darn quick " taper off the prednisone to me. From 20 me doc had me go to 17.5 (splittin the 5's in half), then after a couple weeks of that went down to 15, then after a couple of weeks down to 12.5, then after a couple weeks down to 10. Then it was a prescription of 1mgs, and along with the 5mgs, after a couple weeks on 10, I moved down to 9. This all went in like 2 week increments and decrease 1mg each time. From what you said it looks to me like you have been going from 20 to 15 to 10 and looking at 5. I am thinking OUCH !!!!! Even with the little 1mg decreases I kind of had the ouchies for a few days after each decrease. I do not know if they was real ouchies, or in me head. (Know what I mean?) Anyway kido, I have been off the prednisone since first part of February this year. Only taking the MTX and celebrex and of course the folic acid. Hope you figure out what to do there. Being in pain and misery " is the pitts for sure " . Dan > Hi my nonvegas pals. > My doctor has had me tapering off the prednisone. I got down to 10 mg from 20 mg with some pain and I have had constant pain at 10. She then wanted me to drop to 5 mg after 14 days at 10. Well, I was not doing that. after about 16 days I dropped to 7.5 and now I am in so much pain. My whole body it hurting, every joint and my costo is pretty painful. I don't see any of my new doctors here in Wisconsin until October when my new health plan takes effect. I could take pain pills to get thru this but should I be having this much pain, I am tempted to just take a couple prednisone, except I am so frustrated with the weight thing also. Any comments would be appreciated based on your experience, not looking for medical advice. > > Lynn Dudenhoefer > ldudette@c... > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.520 / Virus Database: 318 - Release Date: 9/18/2003 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Lynn, That sounds like a " too darn quick " taper off the prednisone to me. From 20 me doc had me go to 17.5 (splittin the 5's in half), then after a couple weeks of that went down to 15, then after a couple of weeks down to 12.5, then after a couple weeks down to 10. Then it was a prescription of 1mgs, and along with the 5mgs, after a couple weeks on 10, I moved down to 9. This all went in like 2 week increments and decrease 1mg each time. From what you said it looks to me like you have been going from 20 to 15 to 10 and looking at 5. I am thinking OUCH !!!!! Even with the little 1mg decreases I kind of had the ouchies for a few days after each decrease. I do not know if they was real ouchies, or in me head. (Know what I mean?) Anyway kido, I have been off the prednisone since first part of February this year. Only taking the MTX and celebrex and of course the folic acid. Hope you figure out what to do there. Being in pain and misery " is the pitts for sure " . Dan > Hi my nonvegas pals. > My doctor has had me tapering off the prednisone. I got down to 10 mg from 20 mg with some pain and I have had constant pain at 10. She then wanted me to drop to 5 mg after 14 days at 10. Well, I was not doing that. after about 16 days I dropped to 7.5 and now I am in so much pain. My whole body it hurting, every joint and my costo is pretty painful. I don't see any of my new doctors here in Wisconsin until October when my new health plan takes effect. I could take pain pills to get thru this but should I be having this much pain, I am tempted to just take a couple prednisone, except I am so frustrated with the weight thing also. Any comments would be appreciated based on your experience, not looking for medical advice. > > Lynn Dudenhoefer > ldudette@c... > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.520 / Virus Database: 318 - Release Date: 9/18/2003 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Hi Lynn, I agree with Dan. I think you are decreasing toooooo fast. I lowered my dose by " 5's " also until I got to 15 and then it was 1mg every two to four weeks. It took me ages but I think it was the safest and the smartest as, like Dan, I am off completely now and doing pretty good. I'd have a chat with your Rheumatologist again. xxoo Carmen Quote Link to comment Share on other sites More sharing options...
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