I was diagonised with autoimmune hepatitis in May 2004. I was started on prednisone, than Imuran was added and now am on Imuran alone. I also am on Fosmax and calicum + D.
While on pred I noticed weight gain, bruising , night sweats, tingling across shoulders up neck, and increased blood pressure readings, also broke a rib. Some of the effect went away after weaning off pred. But now I have hair loss, still have the tingling across shoulders but not as intense, and my blood pressure reading are high, I have never had high blood pressure before.
My question is will these symptoms go away? I don't like the idea of going on blood pressure meds, but I have a feeling the dr is going to do that. Will a lower dose help reduce the symptoms? I am on 100mg a day.
welcome here maari
sorry to hear about your problems
I can only partially help you because after having taken pred and imuran, I stopped them both now. here is my experience.
I was diagnosed an autoimmune cholangitis last spring and have been treated with prednisone 50mg/day and imuran (= azioprine, 100 mg/day) combined. I was feeling real bad, vertigo, emotionally upset, weakness, cramps, tinnitus... the list might continue. after 3 months the docs changed their idea and I progressively reduced my prednisone. azioprine could be stopped all in once.
now I' about one month without meds. it took some time to reduce the sx, but now the only thing I still have is the tinnitus (ears ringing) and I do hope it will go away sooner or later. I also can recognize my face again in the mirror now, it was pretty swollen before, and I am taking back my usual weight without any diet. most your sx seem more from prednisone to me. probably, blood pressure can be the only one that's typical from imuran. your doctors should inform you about costs vs benefits of blood pressure meds in your case, and the possible risk in not taking them.
one thing my docs told me very clearly was that imuran MAY (in RARE cases) cause acute pancreatitis, which is extremely dangerous if not recognized and treated at once. they described the symptoms and recommended to go immediately to the emergency room in case I would have them.
the tingling you are perceiving... could it be a simptom of the AIH rather then a sx of imuran ? one definite problem with my disease is itching, can that be something similar...?
are your docs planning to treat you with imuran for a long period, or are they thinking of a possible stop in the next months?
I know how hard it is to see your body changing. I really hope you will stop your meds soon. hold on there, and keep posting. somebody else with autoimmune hep pops up every now and then, so you can get some other opinion. in any case, you will always find a wonderful support group here. these people have been such a precious source of encouragement for me, when I was feeling deep blue!
Thanks for your comments, they helped. I often feel alone in this. My Family Dr. says I'm his first patient with AIH, and my Gastr Dr. has 1 other patient with it. The spec I've seen twice at a large teaching Univ sees so many patients doesn't remember things from prev vists. Like telling me to take Imuran in split doses half am half pm, and on the next visit asks why are you taking it am and pm? I said because you told me to, he flips thru file and says "oh, yes I did."
I've asked about how long I'll need to be on Imuran, and was told they don't know yet. Be patience everybody is different.
The tingling I fell could be described as pins and needles, so far I have not read anything saying it is part of AIH.
my story with the docs is similar. I am the only one for my family doc, and we are rare at the hospital too. I was also taking imuran 50 am and 50 pm, plus prednisone. I should have taken them for a year, and then a new biopsy should have told if it was working. but a few months later the specialists at the hospital said they saw a few more patients of my kind and they reconsidered the stage I am in. sounds that the heavy meds are postponed. however, seeing on the web that my disease is little known everywhere, and cured in the same way all over the planet helped me to accept the thing a little bit.
about your sx. pin-like pains: my info leaflet of azioprine/imuran (this one is produced by Wellcome)talks about mialgia (muscular pains). it also says that alopecia (hair loss) is reversible, luckily, in 80% of cases even during the treatment.
you should do blood test very often, the leaflet suggests a weekly check in the first period, then more rarely. my docs said every two weeks would have been ok, and I did it even less after a certain point. it was an emotional reaction to my feeling of being so "busy" with this disease. an irrational reaction, and wrong, but luckily everything was ok. blood tests are recommended for two reasons: 1) your white, red, platelets count and size may be altered by the med. 2) blood tests are indicative of your response to treatment. so do them often. the info here also recommend to refer to your doctor if you have frequent bruises, and it's your case it seems.
one more recommendation. pamper yourself. if you feel tired, sleep over it. than try doing some moderate exercise (I'm pathologically lazy, but I'll start tai -chi classes tomorrow: new year's resolutions, LOL !). and the healthier you eat, the stronger your liver will be against this hideous disease. fresh food, green tea. and ROOIBOS tea, it has been demonstrated to help reconstruct damaged liver cells (experimentally with rats, hopefully with us humans too).
I'll stop now. feel free to write me at trillian-***@****
and stay around here too. call all your strength to you, and you'll discover you have plenty of it. and plenty of allies in your struggle.
I have AIH. I have the tingling. Many times I have to take two tries with a rest in between at simply sweeping my kitchen floor now. The floor isn't that big ... just that my tingling and numbness gets bad enough I can't hold the broom.
I do NOT do Imuran. Had the Pancreatis thing. And BAD is a good explanation for that. I thought that would kill me.
I do Prednisone. Have for several years. Have the moon face, buffalo hump and all. But I'm alive so who cares.
I wish you luck M. And good to see you are still up and going Anna!
thanks for the good info. I am just a little concerned about the length of time between my blood tests. I stopped pred on Nov 1 my last blood test was on Sept 30, and my next is scheduled for Feb 18. So I quess I pay close attention to what my body is telling me. I keep a journal and record anything different.
I like your attitude on life. Regardless the bad stuff we are still alive.
I am curious just what were your symptoms of pancreatitis?
Sorry I'm late getting back. My dad (80 years old) is very ill and between myself, my son with a case of Strep right now and trying to help my mother, I've had very little time for the computer lately.
My Pancreatic Problems ... In short, I felt like I was having heart attacks. I would hurt in my chest, neck and arms. And hurt VERY bad. I would be nauseous to the point my mouth sweated. I felt like I had an elephant on my chest. I would get my back against a door frame and beat myself in the back trying to burp myself. Just anything. Once (the day I stopped the Imuran in fact) I went and took two of my dad's Nitro pills - 5 minutes apart like the direction said. That was a mistake. It bottomed out my blood pressure and I passed out. Of course my mother thought the heart had done me in. It was a circus!
I stopped the Imuran on my own. The next time I was back at the doctor I told him what I had went through and that I had stopped. He gave me Nexium and told me to try the Imuran again. I did. Same result. So no more Imuran for me! They tried me on several other Imu-Suppressants (sp?). Had problems with all of them. A medication named CellCept came so close to killing me with it's reaction that the doctors finally decided I was to simply stay with the Prednisone. Fine with me. It may make me look funny, but at least it don't hurt!
I'm always happy to answer any medical experience stuff I can. I love to visit also, but Anna will tell you I'm terrible at writing back with just visiting. I get busy with something else and time just gets away. (Sorry Anna) Anyway, if I can help you any, please write. You can get me at email@example.com.
Thanks for the info. I'm going to the doc on Monday. You and Anna started me thinking. I have some other things besides the higher bp, hair loss, I've been cold, every once in awhile when laying down it feels like something is around my throat making it hard to breathe, also I have joint pain everyday and am taking 1 aleve for that. And sometimes it feels like a lump in my throat, and then there is the weight gain.
I have heard from other AIH people that if you have one autoimmune problem you often have others. I had my blood work done and all my levels have come down, so I hope he'll lower the Imuran dose. I'm going to ask the doc to check my thryoid. My sympthoms seem like thryoid stuff.
I was diagnosed with AIH Dec. 2003. I startedon Prednisolone and was then put on Imuran. From day 1 I felt terrible on these drgs. Ext. tired and my who body has slowed to 5 Kph. Can't move about like I used to. Can't do anything physical, just exhausted. Terrible weight gain, hair loss, muscle cramps, dizziness, osteoporosis, am likely to become diabetic. In short my quality of life has gonedown the toilet My spec. says I have to take these drugs forthe rest of my life. I can'tstand feeling like this, and hate being fat. I have to push myself through every single day. Can't keep up with my friends or go on lenghty outings. Has this happened to anybody else out there. Pls advise, Nancy
My dermatologist put me on prednisone then Imuran 150mg/day in 2005. A year later I reduced it to 50mg morning and 50mg evening. I seem to be the lucky one as it has cleared up my excema and no side effects. Having read this forum though, I will be getting more regular blood tests. My point is that the Imuran doesn't seem to have bad side effects for everyone.
Thank you so much for your reply. If I knew other people were suffering in a similar fashion I would not feel so isolated. Just trying to find out if it is just me, being a rare case or these symptoms are indeed quite common. The reason I have to take them is for a very serious disease and can't just take myself off them. Regards Nancy.
I am diagnosed with autoimmune chronic pancreatitis. I have been taking Medrol for two weeks now and after yesterday's doctor's visit, he added Imuran to the prescription. However, he put it on hold since we want to have children. Imuran seems to have side effects to fertility. But after reading this forum, it really changes my prospective. Let alone the side effects of Medrol I am experiencing now.
I have had AIH since 2012 and have been on Prednisone and Imuran. I was on Prednisone for approximately the first year and was able to go off of it because they found my AIH by chance since I also have hypothyroidism and were checking my levels and my liver enzymes were elevated. I am now only on Imuran 50 mg., but have to take it in the morning with a light breakfast or I have vomiting. I have finally started to lose the weight I have gained from the Prednisone, but I am tired and have tinnitus. I have my blood check every six months and so far my liver enzymes have stayed within normal limits, but my doctor will do another liver biopsy before thinking about taking me off Imuran. He said I might have to stay on it forever. AIH goes into remission, but is never cured.
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