Guest guest Posted November 22, 2000 Report Share Posted November 22, 2000 In a message dated 11/22/2000 9:24:04 PM Central Standard Time, Thanks Janet, Does Pete have any problems while on the immuran, such as hair loss, blood work, fatigue, anything? I know I'm grasping for answers, i think I have just gotten scared and the more I read online isn't helping. Especially for the other drug the doc wants to mix with the metho...Remicade. Thanks for your help, tell Pete I said hello and I hope you and your family have a wonderful Thanksgiving. Love you Lu << Dear Lu.Pete was on methotrrexate for 2 years(20mg. a week)..his blood work was normal and he had no hair loss. Then this year they upped him to 25mg a week..within a month his hair started falling out in huge clumps. It was then he decided he wanted to try something new. He's been on the imuran for a few months and he has started to come down on the prednisone..only 1mg a month but its a start. Pete has been very fortunate that his blood work has remained pretty normal. A few times he had a flare his sed rate went up but with a few days of increased pred it went right back down to normal. I hope you find the right one for you. Probably just a matter of trial and error. The reason he asked the doc to try the imuran is because a few folks in the group are on it and seem to be able to come down on the pred and use it only for flares. Take care JanetG >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2000 Report Share Posted November 22, 2000 Dear Lu- Since Pete switched from metho to imuran he is LESS fatigued/tired. For over 1 1/2 years he would take a 2-3 hour "nap" in the afternoon after sleeping 10 hours at night. Now he no longer needs a nap in the afternoon,has no hair loss and so far blood work has been normal. There are others in the group who have been on the imuran for a long time.Hopefully you will hear from them also. Love JanetG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2000 Report Share Posted November 22, 2000 Thanks Janet! Love you Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 Janet, I have been trying to tell her to ask her dr about it. I have been on it for over 7yrs now and am doing just fine. Knock on wood! I was told if you are going to react to the Imuran your body will do it in the first few months that you take it. Hope Pete has continued good luck with it. Lots of Love Glenda --- Baaboo19@... wrote: > Dear Lu- Since Pete switched from metho to imuran he > is LESS fatigued/tired. > For over 1 1/2 years he would take a 2-3 hour " nap " > in the afternoon after > sleeping 10 hours at night. Now he no longer needs a > nap in the afternoon,has > no hair loss and so far blood work has been normal. > There are others in the > group who have been on the imuran for a long > time.Hopefully you will hear > from them also. Love JanetG > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 Lu, Like I said I have take Imuran for 7yrs. I have all my hair and then some from the pred. where I don't need it.LOL I can not remember any side effects other than your immune system being surpressed. All this does is makes it easier to get colds ect. I felt so bad for the little one when she was a baby. She had to get extra shots. When they were immunizing her, the oral polio was the thing. If she had the oral I would have had to wear a face mask for 2 to 3 weeks until it was out of her system so that I did not get polio. This was really scary because if you think about it how many little ones are we around in the grocery stores. Well good news. The last time she went in for her update on immunizations the doctor advised me that now they are giving all polio via injection. Why did it take them so long to figure it out. Well now that I have giving you alot of useful info. I will get back to the subject. Anyway I have had no major problems and can't really tell that I am even taking it. Normal cuts the flares way down if you have them at all. Good luck Lu. Hope whatever you do it starts working and that you can start feeling better. Lots of Love Glenda --- Lu1953@... wrote: > In a message dated 11/22/2000 9:24:04 PM Central > Standard Time, Thanks Janet, > Does Pete have any problems while on the immuran, > such as hair loss, blood > work, fatigue, anything? I know I'm grasping for > answers, i think I have just > gotten scared and the more I read online isn't > helping. Especially for the > other drug the doc wants to mix with the > metho...Remicade. > Thanks for your help, tell Pete I said hello and I > hope you and your family > have a wonderful Thanksgiving. > Love you > Lu > > << Dear Lu.Pete was on methotrrexate for 2 > years(20mg. a week)..his blood > work > was normal and he had no hair loss. Then this year > they upped him to 25mg a > week..within a month his hair started falling out > in huge clumps. It was > then > he decided he wanted to try something new. He's > been on the imuran for a few > months and he has started to come down on the > prednisone..only 1mg a month > but its a start. Pete has been very fortunate that > his blood work has > remained pretty normal. A few times he had a flare > his sed rate went up but > with a few days of increased pred it went right > back down to normal. I hope > you find the right one for you. Probably just a > matter of trial and error. > The reason he asked the doc to try the imuran is > because a few folks in the > group are on it and seem to be able to come down on > the pred and use it only > for flares. Take care JanetG > >> > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 Lots of Love Glenda Hi Glenda--Pete is very hopeful..this is the first time we have reduced the prednisone(only by 1 mg a month) that he hasn't noticed any difference. Pete has so many permanent disabilities from RP it would be so wonderful if we could get down on the pred. We can just pray and wait. Thanks so much for your words of encouragement. Love JanetG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 In a message dated 11/23/2000 3:43:16 AM Central Standard Time, eyeoreluv@... writes: << Well now that I have giving you alot of useful info. I will get back to the subject. Anyway I have had no major problems and can't really tell that I am even taking it. Normal cuts the flares way down if you have them at all. Good luck Lu. Hope whatever you do it starts working and that you can start feeling better. Lots of Love Glenda >> Thanks Glenda, That's what I wanted was to hear everyone's response to how the drug reacted to them and compare things. Love u Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2000 Report Share Posted November 25, 2000 Pete is very hopeful..this is the first time we have reduced the prednisone(only by 1 mg a month) that he hasn't noticed any difference. Pete has so many permanent disabilities from RP it would be so wonderful if we could get down on the pred. We can just pray and wait. Thanks so much for your words of encouragement. Love JanetG Janet G Tell Pete congrassss. I'm hoping someday I can get down to 1 mg of that ugly stuff call pred. God does answer prayers. Boy!! did this post get me hope. love rene' Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.