Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 : I have just came back from Mayo and I have started 160 mg of Imuran for a month and if I don't get sick I will start decreasing the prednisone 2 1/2 mg per month until I hit -0-. I also asked Dr Czaja and he said he wanted me to get the flu shot but I didn't need any other at this time. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 : I've been where you are...hang in there. Get fresh air and sunshine, a brisk walk if you're able is good. Take vitamins...a good multi will do. Also, if you're taking prednisone, be sure to take a calcium supplement as the steroid leaches calcium from your body. Definitely get the pneumovax and flu shot...even though the AZT hampers it a bit, it still will work. Be fastidious about germs - washing your hands, staying away from people with colds & flu, public pay phones, and the like. It doesn't have to be a phobia, but, any public health official will tell you there are some scary germs out there. A little common sense goes a long way. Actigall reduces fat in the liver... a good thing. A low protein diet gives your liver a break. I'm almost a vegetarian at this point. Besides, it's better for your all around health. If you're a person of faith, exercise it regularly - if you're not, give it some thought. God will help you daily through some difficult times. God Bless and take care, A.R. From: " emily simpson " <esimpson7@...> Reply- onelist onelist Subject: [ ] Imuran, Vaccinations Date: Wed, 06 Oct 1999 16:47:57 PDT MIME-Version: 1.0 From errors-165537-7234-araysmith Wed Oct 06 16:48:15 1999 Received: from [209.207.164.159] by hotmail.com (3.1) with ESMTP id MHotMailB9C52AB90053D820F3A5D1CFA49F15150; Wed Oct 06 16:48:15 1999 Received: (qmail 5069 invoked by alias); 6 Oct 1999 23:47:39 -0000 Received: (qmail 5046 invoked from network); 6 Oct 1999 23:47:38 -0000 Received: from unknown (209.207.164.241) by pop.onelist.com with QMQP; 6 Oct 1999 23:47:38 -0000 Received: from unknown (HELO hotmail.com) (216.33.149.13) by mta2.onelist.com with SMTP; 6 Oct 1999 23:53:23 -0000 Received: (qmail 18520 invoked by uid 0); 6 Oct 1999 23:47:59 -0000 Message-ID: <19991006234759.18519.qmail@...> Received: from 205.209.27.26 by www.hotmail.com with HTTP; Wed, 06 Oct 1999 16:47:57 PDT X-Originating-IP: [205.209.27.26] Mailing-List: list onelist; contact -owneronelist Delivered-mailing list onelist Precedence: bulk List-Unsubscribe: <mailto: -unsubscribeONElist> Hi everyone, I have two questions; the first to do with Imuran. I'm currently on 12.5mg Pred, and 50mg Imuran. Since my labs have not gone below 50 yet (and seem to be petering) my doctor has decided to increase the imuran to 100mg per day in the hopes of getting me off pred. Has anyone else done this? Are there side effects? I'm a little apprehensive because of the increased risk of bone marrow suppression. My second question is to do with vaccinations. My intern and doctor have both agreed it's a good idea for me to get a flu and pneumonia vaccine. They say there's no risk involved, except that they may not work as well due to the drugs I'm on. I'm afraid (regardless) that this may trigger a relapse. Has anyone else experienced negative consequences from getting these vaccinations? I just want to make sure they don't outweigh the risks of getting the flu or pneumonia! Thanks for any insight anyone can give me! ------------------------------------------------------------------------ Please support the American Liver Foundation! 1.) To subscribe send e-mail to -subscribeonelist 2.) To UNsubscribe send to -unsubscribeonelist 3.) Digest e-mail format send to -digestonelist 4.) Normal e-mail format send to -normalonelist << text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 , I know that everone reacts differently to different things, but when I was pre ~transplant in end~stage liver disease from AIH I recieved the Hib Titer and the pneumonia vaccine, the flu vaccine and also the series of Hepatitis b vaccinations and i had no ill effect from any of them. I think the benefits of the shots outweigh the risks of not having them. Good Luck on your decision. Lori Cummins AIH Transplanted 3~11~97 [ ] Imuran, Vaccinations >From: " emily simpson " <esimpson7@...> > >Hi everyone, > >I have two questions; the first to do with Imuran. I'm currently on 12.5mg >Pred, and 50mg Imuran. Since my labs have not gone below 50 yet (and seem >to be petering) my doctor has decided to increase the imuran to 100mg per >day in the hopes of getting me off pred. Has anyone else done this? Are >there side effects? I'm a little apprehensive because of the increased risk >of bone marrow suppression. > >My second question is to do with vaccinations. My intern and doctor have >both agreed it's a good idea for me to get a flu and pneumonia vaccine. >They say there's no risk involved, except that they may not work as well due >to the drugs I'm on. I'm afraid (regardless) that this may trigger a >relapse. Has anyone else experienced negative consequences from getting >these vaccinations? I just want to make sure they don't outweigh the risks >of getting the flu or pneumonia! > >Thanks for any insight anyone can give me! > > > >>Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 I also have AIH My no. were not going down either my Dr then increased my immurin from 50 to 100mg. it has been working my nos. have been normal now for several months and she just reduced my pred. to 2.5 mg. daily and still 100mg. immurin I had no problems with the increased immurin I just yestreday got a pneomia vac. so far so good In 2 weeks I will get a flu shot. I always got a flu shot even before my AIH Pa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Dear Alan, Thank you for your thoughtful response! I'm currently doing many of the things you've suggested (ie.mulit-vitamin, exercise, calcium etc.). No one has said anything to me about the Actigall, so I will definitely look into that! As far as the protein goes, I see a Dietician at the hospital every two months, and she has done the opposite for me and actually increased my protein intake to three servings a day. She says protein helps the liver heal itself! Isn't it crazy how all our specialists say different things?!?! Anyways, I'm definitely going to take your advice about the flu and pneumonia shots, and I will be extra careful about germs. Thanks again..I was worried, but now I feel better... >From: " alan smith " <araysmith@...> >Reply- onelist > onelist >Subject: Re: [ ] Imuran, Vaccinations >Date: Thu, 07 Oct 1999 06:25:33 PDT > >: > >I've been where you are...hang in there. Get fresh air and sunshine, a >brisk walk if you're able is good. Take vitamins...a good multi will do. >Also, if you're taking prednisone, be sure to take a calcium supplement as >the steroid leaches calcium from your body. Definitely get the pneumovax >and flu shot...even though the AZT hampers it a bit, it still will work. >Be >fastidious about germs - washing your hands, staying away from people with >colds & flu, public pay phones, and the like. It doesn't have to be a >phobia, but, any public health official will tell you there are some scary >germs out there. A little common sense goes a long way. Actigall reduces >fat in the liver... a good thing. A low protein diet gives your liver a >break. I'm almost a vegetarian at this point. Besides, it's better for >your all around health. If you're a person of faith, exercise it regularly >- if you're not, give it some thought. God will help you daily through >some >difficult times. God Bless and take care, A.R. > > >From: " emily simpson " <esimpson7@...> >Reply- onelist > onelist >Subject: [ ] Imuran, Vaccinations >Date: Wed, 06 Oct 1999 16:47:57 PDT >MIME-Version: 1.0 >From errors-165537-7234-araysmith Wed Oct 06 16:48:15 1999 >Received: from [209.207.164.159] by hotmail.com (3.1) with ESMTP id >MHotMailB9C52AB90053D820F3A5D1CFA49F15150; Wed Oct 06 16:48:15 1999 >Received: (qmail 5069 invoked by alias); 6 Oct 1999 23:47:39 -0000 >Received: (qmail 5046 invoked from network); 6 Oct 1999 23:47:38 -0000 >Received: from unknown (209.207.164.241) by pop.onelist.com with QMQP; 6 >Oct >1999 23:47:38 -0000 >Received: from unknown (HELO hotmail.com) (216.33.149.13) by >mta2.onelist.com with SMTP; 6 Oct 1999 23:53:23 -0000 >Received: (qmail 18520 invoked by uid 0); 6 Oct 1999 23:47:59 -0000 >Message-ID: <19991006234759.18519.qmail@...> >Received: from 205.209.27.26 by www.hotmail.com with HTTP; Wed, 06 Oct 1999 >16:47:57 PDT >X-Originating-IP: [205.209.27.26] >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >Hi everyone, > >I have two questions; the first to do with Imuran. I'm currently on 12.5mg >Pred, and 50mg Imuran. Since my labs have not gone below 50 yet (and seem >to be petering) my doctor has decided to increase the imuran to 100mg per >day in the hopes of getting me off pred. Has anyone else done this? Are >there side effects? I'm a little apprehensive because of the increased >risk >of bone marrow suppression. > >My second question is to do with vaccinations. My intern and doctor have >both agreed it's a good idea for me to get a flu and pneumonia vaccine. >They say there's no risk involved, except that they may not work as well >due >to the drugs I'm on. I'm afraid (regardless) that this may trigger a >relapse. Has anyone else experienced negative consequences from getting >these vaccinations? I just want to make sure they don't outweigh the risks >of getting the flu or pneumonia! > >Thanks for any insight anyone can give me! > > > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 I too had success in getting off prednisone by increasing the Imuran from 75 mg to 100 mg first. Now that I am off prednisone, my doctor has me back to taking 75 mg of Imuran. By reducing the Imuran, my white blood cell counts should go up. I won't know how well this works for some time as the Imuran is slow acting and I am not due for a blood test for another month. So far though I feel fine. The first time my doctor had me reduce the prednisone, he did not increase the Imuran and I started to relapse before the prednisone was totally withdrawn. So it was back to 20 mg of prednisone for a time. I delayed in starting to go off the prednisone for another 6 months and will never know whether the increase in Imuran was necessary or not. As for vaccinations, I am definitely an advocate. Both my local GI and Cleveland Clinic approved having the flu and pneumonia vaccines. I got them at separate times so in case I had a reaction, the doctors would be able to separate the cause. The pneumonia vaccination I got lasts for 7 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Sue, Welcome back!!!!! How did your visit to Mayo go? (AIH) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 : I am on 12mg of Pred and 100mg of Imuran (just increased Imuran from 75mg to 100mg Sept. 7) So far I have not had any adverse side effects. My doctor wants me to get a flu shot and I have an appt. scheduled for 11/2. Will let you know what happens. I am just getting better from a virus, and believe me, if the flu is anything like what I just went through, I will take the shot gladly. It is three weeks now and I am still not 100%. Warmly, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 : Mayo went fine. Really had good tests and I am now on 150 mg of Imuran for a month and if tolerated I get to start decreasing my prednisone by 2.5 per month until done. I also am also getting a new antidepressant pill. Have to taper off the one I am on for two weeks and then for 2-3 days I start my new medicine. I hope that it works. My trip the week before to Montana was more fun. My sister and brother-in-law showed me a great time. Montana is really pretty and the town she lives in is right on Flat Head Lake. Beatiful country. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 hello barbara who do you see at the cleveland clinic? Cheryl and Randy West Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 I only visited the Cleveland Clinic once for a transplant evaulation but the experience was great. They lived up to their reputation as far as I was concerned. The hepatologist I saw was Dr. Carey at 216-444-6885. He is the head of the hepatology Department. He wanted me to come back for periodic visits which I have not done. I live in Columbus and go to Dr. Victor Jochem. He had my biopsy slides sent to Mayo for evaluation by the pathologist there. He wanted a second opinion and sent me for the transplant evaluation. My insurance at the time used centers of excellence for such procedures and the closest was the Cleveland Clinic. Also in the Columbus is Dr. Levin who is highly regarded for his treatment of liver disease. > From: Cheryl722@... > > hello barbara > > who do you see at the cleveland clinic? > > Cheryl and Randy > West Virginia > > > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to -subscribeonelist > 2.) To UNsubscribe send to -unsubscribeonelist > 3.) Digest e-mail format send to -digestonelist > 4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 ok dont write me again Re: [ ] Imuran, Vaccinations >From: Cheryl722@... > >hello barbara > > >who do you see at the cleveland clinic? > >Cheryl and Randy >West Virginia > >>Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 Hi Sue! Good to hear from you! How have you been? I hope you're able to decrease the prednisone. That drug, as beneficial as it is, can also cause side effects that are pretty tough to deal with. That's amazing that you see Dr.Czaza. The best, most informative articles I've read are one's he's written. I too have now had the flu shot, but no one keeps the pneumonia vaccine on hand - not even the emergency room at the hospital! I guess I'll keep looking..I was waiting to increase my Imuran to 100mg because I wanted to get the vaccines out of the way first, but I guess that's not going to happen! Take care of yourself! Em >From: Roselle50@... >Reply- onelist > onelist >Subject: Re: [ ] Imuran, Vaccinations >Date: Wed, 6 Oct 1999 20:29:01 EDT > >: > >I have just came back from Mayo and I have started 160 mg of Imuran for a >month and if I don't get sick I will start decreasing the prednisone 2 1/2 >mg >per month until I hit -0-. > >I also asked Dr Czaja and he said he wanted me to get the flu shot but I >didn't need any other at this time. > >Sue AIH >Wisconsin > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 : I was watching the news tonight and our town and areas around us have not received the flu shot vaccine yet. I guess I better call and get me doctor set up with one with they come in so I can get one right away. Dr Czaja is such a wonderful person. I love going to him and I am not nervous with all the tests and things they want to do with me because I know that the Mayo try their hardest to make the patient at ease when they are there. I have been having problems with the changing of the drugs but it isn't enough yet to get a call out to him. I know the body has to adjust to the changes. Take care and keep in touch Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
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