I am taking 50mg of imuran for sarcoidosis. My hair is now falling out in handfuls like it did when I was on mtx. Does anyone know if taking folic acid will help? I know that the mtx suppresses something and that is why we need the folic acid. I don't know if Imuran does the same thing so not sure if folic acid would help or not?
My rd says she uses humira off label to treat sarcoidosis and since I have a big supply of it at home, I went ahead and took a shoot last week. I see the pulmonologist this Friday but I am afraid he is not going to be open to off label uses. When I told him that I had tried imuran before and it made me sick he said it was that or prednisone so I chose the imuran. It doesn't seem to be making me too sick, just tired and the hair loss but I know he said that he wanted to raise the dose. I would rather do humira with it and add in minocin as that is also used to treat it but he didn't give it to me as an option at the first appt.
I am still trying to recover from my hospital stays and get back into the swing of things and fear I won't be strong enough to tell him all this and what if he refuses and insists that I go on a higher dose of the imuran?
I don't think it would hurt to try the folic acid. You can get 400 mcg or 800 mcg folic acid tablets for cheap. You should be able to take up to 2 mg with no problem. That would be 5 of the 400 mcg ones.
I also was put on Imuran. I could not deal with the fatigue so I told them I wouldn't take it. A lot of doctors aren't familiar with the Minocin protocol. There is an Arthritis Institute in Riverside, CA that has a lot of experience with it I know.
Isn't using Imuran off label? It's used to treat kidney rejection in transplant patients. I can understand not wanting to go on the prednisone definitely. I'd fight for the Humira. Good luck!
I don't know if it was purely coincidental or not, but my hair started shedding really bad shortly after I started taking MTX. I started taking Biotin and after several weeks, I noticed a huge difference. I have normal shedding again.Imuran is commonly used for sarcoidosis, as well as ulcerative colitis and for the rejection of transplanted organs. Sarcoidosis is different from RA but can cause the same symptoms. It is now seriously affecting my lymph system, causing many nodules to grow on my lungs and internal organs. They think that this has been my problem for the past three years and that I probably don't have ra. Its all speculation at this point. Sarcoidosis has a lot of the same traits as tuberculous so they think that it has an infection component to it.
Very interesting. It kind of fits in with the research I've done about bacterial overgrowth and imbalances in the digestive system, which end up affecting the whole body. Thanks.
Michele, sorry to hear you're back on the Imuran. I'm up to 150 mg/day now and I'm doing alright with it. As to the hair loss question, I was wondering that when I first went on it. I stopped taking the prescription folic acid but continued taking my multi-vitamin plus a b-complex (including folic acid) which gives me not quite 1 mg a day. I haven't had any hair loss issues so far, but I don't know if that means anything.
I agree with slbridges that it couldn't hurt, so I would go ahead and take the folic acid and see if that helps.
As for the doctor visit...write down in advance everything you want to cover so you don't forget and remember that ultimately the decisions are all up to you. If you don't want to go on a higher dose, tell him you won't and ask him about the alternatives. I know it's easier said than done, but do your best.
So aside from being tired with the Imuran, how are you feeling overall these days?
I am feeling relatively ok, less pain than in the past. Still struggling with the depression and fatigue. I am feeling really down on myself as I gained back the weight I had lost. The weight gain is from the zyprexa, I swear its worse for food cravings than prednisone! I am off that now and really trying hard to lose weight but I am in one of those "fat and ugly" moods that just won't stop!50mg of Imuran is pretty low... I was on 100mg for about 2 years and never noticed any side effects at all. I was then bumped up to 150mg and BAM... my immune system was shot! (granted I am on Rhemicade as well...)
I would watch you WBC's with your doc. Also your liver functions. That is where my issue started and then because I had such a bad immune system I contracted a staph infection.
Sorry you are having the hair loss problem w/Imuran. Good to hear from you though. I hope you are able to enjoy the holidays just a bit.
All the best
Crispy
Hi Michelle,
When I started imuran I had hair loss too, but then it stopped falling out so much. I wonder if there is some type of adjustment going on? I'm on 150 mg now and notice some extra hair loss but its not too bad. I lose more hair on prednisone. Maybe everyone reacts differently.
Laker