Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Hi Nick, Gosh you've been dealing with this for a long time already. I believe that immuran can affect platelet counts, which is one reason I'm not on it - it played havoc with my blood counts. The spleen can get large and inflamed due to the problems of the liver processing more slowly and it backs up in the spleen. At least that's my simple understanding. The prednisone should help settle things down. I'm not sure about the lower right back pain - it must be too low for kidney? Keep bugging them about it - maybe you pulled something? You can't be too careful as there are so many things that the liver affects. Hang in there! Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Hey Amy, thanks for the reply... Yeah, I have been dealing with it for a long time. I've been through SO much that I think I could write a book or two... I have a pretty thorough understanding of how imuran works, and the specific function of the spleen... Basically, I've been on imuran since day one. Imuran can and does affect platelet counts, but mine have always hovered around 115. A 'normal' person should be around 150. This time I was down to 51! Then up to 73, three days later. In the past 13 years, any 'incidents' I've had, have always been handled by manipulating prednisone dosages. Be it up, down, on, or off, that ALWAYS took care of it. My imuran dosage has always been the same. So, I guess my (refined) question is: Has my body suddenly started reacting to imuran differently than it has for 13 years? Is that possible, and if so, likely? What other things can cause that specific count to fluctuate? While I pretty much know AIH inside and out -- and since it's my only significant problem (as if it's not enough ) -- I've never bothered to really look into anything else... Nick (I hope that didn't come across with an aggressive overtone -- I'm just aggravated!) > Hi Nick, > Gosh you've been dealing with this for a long time already. I believe > that immuran can affect platelet counts, which is one reason I'm not on it - > it played havoc with my blood counts. The spleen can get large and inflamed > due to the problems of the liver processing more slowly and it backs up in > the spleen. At least that's my simple understanding. The prednisone should > help settle things down. I'm not sure about the lower right back pain - it > must be too low for kidney? Keep bugging them about it - maybe you pulled > something? You can't be too careful as there are so many things that the > liver affects. Hang in there! > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Hi Nick Several times this year I've had excruiting pain right side and lower back. Actually put me in hospital & I had a cat scan to check, kidneys, gallbladder etc. & everything OK. Because nothing showed my doctor said it was unrelated to AIH and that I had been overdoing things (I wish I wish!). I made an appt with my specialist who is in a city, not a small place like where I live). I took my scans to him, confirmed what the hospital said that everything seemed OK, but that I have now got osteoporosis in my spine caused by prednisone). He explained that this most probably was causing my intermittent " exquisite " (his word) pain, but like you my spleen is enlarged so I am not totally convinced. My specialist put me on mercaptopurine, said I would tolerate it better. I don't know I'm taking it as I don't experience any side effects. Take care - Jan (NZ) Anyone else out there from New Zealand? [ ] Re:Nick > Hey Amy, thanks for the reply... > > Yeah, I have been dealing with it for a long time. I've been > through SO much that I think I could write a book or two... > > I have a pretty thorough understanding of how imuran works, and the > specific function of the spleen... Basically, I've been on imuran > since day one. Imuran can and does affect platelet counts, but mine > have always hovered around 115. A 'normal' person should be around > 150. This time I was down to 51! Then up to 73, three days later. > In the past 13 years, any 'incidents' I've had, have always been > handled by manipulating prednisone dosages. Be it up, down, on, or > off, that ALWAYS took care of it. My imuran dosage has always been > the same. > > So, I guess my (refined) question is: Has my body suddenly started > reacting to imuran differently than it has for 13 years? Is that > possible, and if so, likely? What other things can cause that > specific count to fluctuate? While I pretty much know AIH inside > and out -- and since it's my only significant problem (as if it's > not enough ) -- I've never bothered to really look into anything > else... > > Nick > > (I hope that didn't come across with an aggressive overtone -- I'm > just aggravated!) > > > > > Hi Nick, > > Gosh you've been dealing with this for a long time already. > I believe > > that immuran can affect platelet counts, which is one reason I'm > not on it - > > it played havoc with my blood counts. The spleen can get large > and inflamed > > due to the problems of the liver processing more slowly and it > backs up in > > the spleen. At least that's my simple understanding. The > prednisone should > > help settle things down. I'm not sure about the lower right back > pain - it > > must be too low for kidney? Keep bugging them about it - maybe > you pulled > > something? You can't be too careful as there are so many things > that the > > liver affects. Hang in there! > > > > Amy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2002 Report Share Posted October 1, 2002 Hi Nick, Gosh, I wish I knew more! I only know that my platelets have been getting worse slowly over the last several years until now I am around 39. I was diagnosed after full cirohosis had already ocurred aboaut 5 years ago during a gall bladder operation. I was already on plaquenil for sjogren's so my liver counts were okay and have been for about 7 years - just a gradual decline with some big blooies in there once in awhile until now I am on the transplant list. Hopefully your drs can get to the bottom of this and get you back on track! It doesn't matter how long we have to deal with it, we still can get verrrrrry frustrated! Take care! Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Starting tx is scary. For both you and your loved ones. Everyone here told us that the first month is the worst, and Shane's made it through that so I figure we're home free. We were also told that it is all about managing the side effects and keeping positive, and that is so true with Shane. Shane was fired due to his Hep C and beginning tx so I am the one working now and I've found that on the days that our son is home with Shane and not at pre-school that he (Shane) is more upbeat and positive...the same ole Shane, but on the days that he is home alone without anything or anyone to really keep him " busy " it is very difficult for him to not get depressed or angry. Just stay positive...we're all here for you. You're in our thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
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