Aa
Autoimmune Hepatitis & other autoimmune diseases
Hi,
Just wondering if any out there that are suffering from autoimmune hepatitis have other family members that have autoimmune diseases? I have 2 brothers who both have autoimmune diseases plus a cousin who just passed from one. In addition, my cousin who passed, her mother passed from Lupus in her forties. I have also been thru tx for HCV and am okay now for about yr and half.
Jody
Just wondering if any out there that are suffering from autoimmune hepatitis have other family members that have autoimmune diseases? I have 2 brothers who both have autoimmune diseases plus a cousin who just passed from one. In addition, my cousin who passed, her mother passed from Lupus in her forties. I have also been thru tx for HCV and am okay now for about yr and half.
Jody
Hey there,
6 MP is almost the exact replica drug as imuran. They basically start everyone off on prednisone (the swell drug) and imuran. But many Dr's use prednisone and 6 mp. I was on prednisone and imuran for awhile. Became very allergic to the imuran after about 6 months. So they put me on 6 mp. My Dr. told me they find people who are allergic to imuran do much better on 6mp. but basically it is the same drug made by a different manufacturer. Needless to say I was allergic to that as well. Way to similar a drug. So now I am on prednisone(7.5 mg) and cellcept. The newest drug around. But it has made me the best I've been in a year and a half. My liver numbers went from 100 ast and 150 alt to 22 ast and 23 alt. All in 3 weeks...I have had no problems w/it and finally my liver numbers are in the normal range.
Have a good one....
6 MP is almost the exact replica drug as imuran. They basically start everyone off on prednisone (the swell drug) and imuran. But many Dr's use prednisone and 6 mp. I was on prednisone and imuran for awhile. Became very allergic to the imuran after about 6 months. So they put me on 6 mp. My Dr. told me they find people who are allergic to imuran do much better on 6mp. but basically it is the same drug made by a different manufacturer. Needless to say I was allergic to that as well. Way to similar a drug. So now I am on prednisone(7.5 mg) and cellcept. The newest drug around. But it has made me the best I've been in a year and a half. My liver numbers went from 100 ast and 150 alt to 22 ast and 23 alt. All in 3 weeks...I have had no problems w/it and finally my liver numbers are in the normal range.
Have a good one....
I sure hope this finds you all doing well, or better. If I may ask what kind of medicine is 6mp? I've only been on Imuran and Prednisone (the swell pill ;) )
Jody, as soon as they put the TIPS in, they put me on the liver transplant list. Kidneys are still doing well, but spleen is taking a hit, my platelets are down and they won't replace them unless you go below 20,000. I think mine are around 40,000. Thank you for your really nice welcome and helping with your knowledge.
Erin, Hope you feel better very soon with your swelling, it sounds very uncomfortable.
Hugs to you all!! :)
Jody, as soon as they put the TIPS in, they put me on the liver transplant list. Kidneys are still doing well, but spleen is taking a hit, my platelets are down and they won't replace them unless you go below 20,000. I think mine are around 40,000. Thank you for your really nice welcome and helping with your knowledge.
Erin, Hope you feel better very soon with your swelling, it sounds very uncomfortable.
Hugs to you all!! :)
Hi Erin,
sorry to hear about how you are feeling. Glad that your Liver numbers are heading back where they should, but yes it does sound like the lupus is really acting up. Well I wanted to tell you the medicine my Dr. moved me to is CELLCEPT. If you remember I was allergic to imuran and 6 mp. So he moved me to cellcept. Now cellcept is only been around 5 years, but my Dr. told me it was grabbing Dr's attention left and right for how well it was doing on people. Well I'm living proof. My numbers went from 100 and 150 (ast/alt) to 20 and 22 in 3 weeks. But anyway, I was nervous about the medication becuz nobody in the AIH community seems to really be on it. I found 1 person whose husband has been on it for awhile. But anyway, my step mom has lupus and gets a lupus magazine every month and in there was a big right up about my new drug cellcept. Apparently, they are calling it the lupus cure drug. I only have AIH and that is what my dr is using it on me for but in the lupus community they seem to be using it a lot now too and seeing great results...The article she sent me was fascinating and made me feel much better on it. I've looked it up quite a bit on line as well, and there is a lot of info that connects cellcept and lupus. Check it out and talk to your Dr. about it. This way maybe they can take you off the imuran which seems to only be helping the AIH and entertain the idea of cellcept. Now, it is a lot more expensive and depending on your insurance it may cost much more out of pocket. Imuran and 6mp only cost me $15 for every prescription and cellcept costs me $30. No big deal if it helps!!!!!
Check it out Erin and let me know!
sorry to hear about how you are feeling. Glad that your Liver numbers are heading back where they should, but yes it does sound like the lupus is really acting up. Well I wanted to tell you the medicine my Dr. moved me to is CELLCEPT. If you remember I was allergic to imuran and 6 mp. So he moved me to cellcept. Now cellcept is only been around 5 years, but my Dr. told me it was grabbing Dr's attention left and right for how well it was doing on people. Well I'm living proof. My numbers went from 100 and 150 (ast/alt) to 20 and 22 in 3 weeks. But anyway, I was nervous about the medication becuz nobody in the AIH community seems to really be on it. I found 1 person whose husband has been on it for awhile. But anyway, my step mom has lupus and gets a lupus magazine every month and in there was a big right up about my new drug cellcept. Apparently, they are calling it the lupus cure drug. I only have AIH and that is what my dr is using it on me for but in the lupus community they seem to be using it a lot now too and seeing great results...The article she sent me was fascinating and made me feel much better on it. I've looked it up quite a bit on line as well, and there is a lot of info that connects cellcept and lupus. Check it out and talk to your Dr. about it. This way maybe they can take you off the imuran which seems to only be helping the AIH and entertain the idea of cellcept. Now, it is a lot more expensive and depending on your insurance it may cost much more out of pocket. Imuran and 6mp only cost me $15 for every prescription and cellcept costs me $30. No big deal if it helps!!!!!
Check it out Erin and let me know!
Hi Everyone
Sorry not to have posted for a while. I went on a family vacation to Williamsburg, VA from June 27th thru July 4th and am home now. VA is beautiful, but I couldn't fully enjoy it b/c. I've been having the horrible esophagus discomfort again (it's gone today, but I had a nasty 3-4 day stretch of it). I've also had MAJOR inflammation in my hands. I always have some sore joints at any given time, but this was really bad. On the 1st my hands were so swollen....and we were at Busch Gardens, so, I was miserable and couldn't properly enjoy the day. Then the next 3 days my left index finger was SO inflammed at the lowest joint that I couldn't move it. I ended up taping it to my middle finger which helped a bunch. And of course, today it's fine as if it didn't happen. Plus, I've been dealing with the perputual sore throat for I don't even know how long.
The good news is that my last labs were promising. My AST dropped from 67 to 63 and my ALT from 61 to 44. So, the 100mg of Imuran is sending them in the right direction now.
I'm not scheduled to see my rheumy until July 10th, but I'm going to call Monday and beg to get in sooner. I really think he needs to try an additional med for my Lupus as obviously the Imuran is only controlling my AIH.
Oh, I've also been experiencing what I can only think to describe as muscle fatigue or weakness in my upper arms.
Kim: when I weaned off the Prednisone, once I was down to 10mg I took that for 2 wks then went to 5mg for 2 wks and then 2.5 for 10 days and then off.
Well, I hope everyone is doing OK and having a great holiday weekend. I'll let you know what happens at the rheumatologist.
Erin
Sorry not to have posted for a while. I went on a family vacation to Williamsburg, VA from June 27th thru July 4th and am home now. VA is beautiful, but I couldn't fully enjoy it b/c. I've been having the horrible esophagus discomfort again (it's gone today, but I had a nasty 3-4 day stretch of it). I've also had MAJOR inflammation in my hands. I always have some sore joints at any given time, but this was really bad. On the 1st my hands were so swollen....and we were at Busch Gardens, so, I was miserable and couldn't properly enjoy the day. Then the next 3 days my left index finger was SO inflammed at the lowest joint that I couldn't move it. I ended up taping it to my middle finger which helped a bunch. And of course, today it's fine as if it didn't happen. Plus, I've been dealing with the perputual sore throat for I don't even know how long.
The good news is that my last labs were promising. My AST dropped from 67 to 63 and my ALT from 61 to 44. So, the 100mg of Imuran is sending them in the right direction now.
I'm not scheduled to see my rheumy until July 10th, but I'm going to call Monday and beg to get in sooner. I really think he needs to try an additional med for my Lupus as obviously the Imuran is only controlling my AIH.
Oh, I've also been experiencing what I can only think to describe as muscle fatigue or weakness in my upper arms.
Kim: when I weaned off the Prednisone, once I was down to 10mg I took that for 2 wks then went to 5mg for 2 wks and then 2.5 for 10 days and then off.
Well, I hope everyone is doing OK and having a great holiday weekend. I'll let you know what happens at the rheumatologist.
Erin
I am so sorry I missed over your posting. I guess it was because I had so many e-mails when I returned & that I deleted so many junk e-mails that when the one that came thru telling me of your posting I deleted it by accident.
I was just thinking that perhaps because of the procedure that you have gone thru recently with the portal artery rupturing, don't you think that moved you up on the MELD score? I know a little about it, went thru it with my brother last year & it seems that would move you up pretty high on the list. I do recognize that the list changes wkly due your state of health along with the rest on the lists state of health.
I know about some of the other meds you are taking also to do with the lacutose & bilirudin or however it is pronounced. I am so happy that they were able to do the TIPS thing also, they couldn't do it for my brother. Your kidneys are doing good I hope?
I just wanted to jump out here & apologize to Tenderheart for missing her posting.
Hope this finds all the rest doing great. Hugs to all, Jody
I was just thinking that perhaps because of the procedure that you have gone thru recently with the portal artery rupturing, don't you think that moved you up on the MELD score? I know a little about it, went thru it with my brother last year & it seems that would move you up pretty high on the list. I do recognize that the list changes wkly due your state of health along with the rest on the lists state of health.
I know about some of the other meds you are taking also to do with the lacutose & bilirudin or however it is pronounced. I am so happy that they were able to do the TIPS thing also, they couldn't do it for my brother. Your kidneys are doing good I hope?
I just wanted to jump out here & apologize to Tenderheart for missing her posting.
Hope this finds all the rest doing great. Hugs to all, Jody
Hi Everyone,
I hope this finds you all doing well and enjoying your weekend. Thank you for responding Kim, and your asking, I hope this helps.
Kim, what state do you live in?? Grrr... know the feeling about the doctor. Good luck with that. Well, they found my AIH when I donated blood for the first time. My levels were in the 600-800 range. They wrote me back and asked if I abused alcohol. I never did drink so that wasn't the problem. They then put me through a battery of tests, numerous doctors, and found what it was by the liver biopsy. They first tried a high dose of prednisone (60 mg.) and they didn't seem to put my liver levels close to normal range, so they also added 100mg of Imuran. That was the key. I've been on both medications since this all started. They've tried lowering the dose, since higher doses have so many side effects. I am down now to 7.5 mg of prednisone and 100 mg of Imuran.
It came to the point of me needing a transplant when the Hepatic/Portal Artery ruptured and lost a lot of blood. They put a TIPS appliance in the 1st day and the next day they had to reposition it for better blood flow. I was in ICU for a week afterwards, (this was 2 yrs ago. Now on Monday, they will do another revision to get a better blood flow as I'm having trouble with fluid build up in my belly, legs, and feet. They increased my Spirolactone and Lasix (both diuretics(?) ) and that helped me lose the fluids but the revision will help the most. When they first put me on the liver transplant list they go by a MELD scoring system (scoring system for the US). I think they go by so many points for the TIPS, your liver levels, and bilirubin levels. I'm not really sure about the scoring system, but this is what I was told, someone else might know more about this than me. I've heard the highest MELD score is 30, and I started out with a MELD score of 6 when they 1st put me on.
Have a good weekend and know I'm keeping you in my thoughts and prayers!
Tender
I hope this finds you all doing well and enjoying your weekend. Thank you for responding Kim, and your asking, I hope this helps.
Kim, what state do you live in?? Grrr... know the feeling about the doctor. Good luck with that. Well, they found my AIH when I donated blood for the first time. My levels were in the 600-800 range. They wrote me back and asked if I abused alcohol. I never did drink so that wasn't the problem. They then put me through a battery of tests, numerous doctors, and found what it was by the liver biopsy. They first tried a high dose of prednisone (60 mg.) and they didn't seem to put my liver levels close to normal range, so they also added 100mg of Imuran. That was the key. I've been on both medications since this all started. They've tried lowering the dose, since higher doses have so many side effects. I am down now to 7.5 mg of prednisone and 100 mg of Imuran.
It came to the point of me needing a transplant when the Hepatic/Portal Artery ruptured and lost a lot of blood. They put a TIPS appliance in the 1st day and the next day they had to reposition it for better blood flow. I was in ICU for a week afterwards, (this was 2 yrs ago. Now on Monday, they will do another revision to get a better blood flow as I'm having trouble with fluid build up in my belly, legs, and feet. They increased my Spirolactone and Lasix (both diuretics(?) ) and that helped me lose the fluids but the revision will help the most. When they first put me on the liver transplant list they go by a MELD scoring system (scoring system for the US). I think they go by so many points for the TIPS, your liver levels, and bilirubin levels. I'm not really sure about the scoring system, but this is what I was told, someone else might know more about this than me. I've heard the highest MELD score is 30, and I started out with a MELD score of 6 when they 1st put me on.
Have a good weekend and know I'm keeping you in my thoughts and prayers!
Tender
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