Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 Hi nne, It is the imuran that is the immunosuppresant or I have been confused for quite awhile. Prednisone is the steroid. Now someone let me know if I am wrong please. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 Rosemary....they both are classified as immunosupressants.... I sent a description of both to the group that I got off the net... that pretty much tells how they work and what they do..... Jerry Hi nne, It is the imuran that is the immunosuppresant or I have been confused for quite awhile. Prednisone is the steroid. Now someone let me know if I am wrong please. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 nne, Just in case you are anywhere near Durham, I just heard on the TV that they are giving free flu shots today at the Y. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 In a message dated 12/12/00 12:13:11 PM Pacific Standard Time, nneW5@... writes: << I am on prednisone only and trying to get the dosage down further. >> I'm curious -- do you know why you're on prednisone only? Do you have trouble tolerating Imuran, etc.? My very, very limited understanding was that Imuran, which has its own unfortunate side effects at times, might ameliorate some of the side effects of Prednisone. As I, too, have AIH (diagnosed May) I'm always curious as to why one treatment is chosen over another. (I started with 80 mg prednisone in May and was supposed to be taking 150 mg Imuran -- but a mistake was made in the instructions, so I wound up with 100 mg Imuran during the high-dosage period. I'm down to 10 mg Prednisone now, with 100 mg Imuran.) Are you taking calcium/vitamin D, I hope? I'm impressed by your continuing to work and tend to your family. Best wishes. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 Thanks for the info Rosemary...wish I were close to there! On Tue, 12 Dec 2000 12:16:00 EST, egroups wrote: > nne, > Just in case you are anywhere near Durham, I just heard on the TV that > they are giving free flu shots today at the Y. > > Rosemary _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 Hi Rosemary! It is good to know someone else from nearby. I am, coincidentally, in Greensboro. How long ago was your son diagnosed? From the postings I have read, sounds as if he is doing pretty well responding to treatment. Is he on prednisone alone or some combination? I know it must be difficult for you with him being in school and you not being able to keep an eye on him 24/7 like a mom wants to do! I was just diagnosed in November after my 2nd acute attack of hepatitis... I am seeing a local gastro, trying learn more about AIH and getting adjusted to the idea of having this thing. I am on prednisone only and trying to get the dosage down further. Only hold up is that the progress has slowed a bit, so the doc is keeping me on the current level for right now. We'll see after the blood work next week. I am married, have 2 kids (14 1/2 and 11) who are all having to make adjustments to this along with me. I am fortunate that I have been able to keep working with only a few days out during this, although I will say I am not as efficient as I was before..and housework? Well..let's not go there. LOL That was probably more than you really wanted to know...sorry! Sometimes I do get carried away! Hope that your son continues to do well, and that he gets thru exams well! On Tue, 12 Dec 2000 00:45:20 EST, egroups wrote: > nne, where are you from in NC. I am from Oxford. It is about 30 minutes > north of Durham. My son, who is 19 is the one with AIH. He's a student at > UNCG. He is seen by DR Killenburg at Duke. How about you? It is nice > to find other North Carolinians. > > Rosemary _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 One must remember that prednisone besides being immunosupressant is actually a cortical-steriod and as such is used to attack inflammation in the liver and joints. It is used to keep te bodies normal cortical-steroid levels up. Immuran is an immunosuppresant that works by inhibiting the growth of T-lymphocytes, which is the basis of this disease---our bodies lymphocytes our attacting and killing our liver cells. Being on prograf already I don`t think my doctors will feel a need to prescribe imuran.... at least its never been mentioned.. in fact some thought has been given to lowering my dosage of prograf....but for now i`m in a holding pattern of 10mgs pred./4mgs prograf per day.... different strokes for different folks. jerry In a message dated 12/12/00 12:13:11 PM Pacific Standard Time, nneW5@... writes: << I am on prednisone only and trying to get the dosage down further. >> I'm curious -- do you know why you're on prednisone only? Do you have trouble tolerating Imuran, etc.? My very, very limited understanding was that Imuran, which has its own unfortunate side effects at times, might ameliorate some of the side effects of Prednisone. As I, too, have AIH (diagnosed May) I'm always curious as to why one treatment is chosen over another. (I started with 80 mg prednisone in May and was supposed to be taking 150 mg Imuran -- but a mistake was made in the instructions, so I wound up with 100 mg Imuran during the high-dosage period. I'm down to 10 mg Prednisone now, with 100 mg Imuran.) Are you taking calcium/vitamin D, I hope? I'm impressed by your continuing to work and tend to your family. Best wishes. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 In a message dated 12/12/00 6:08:50 PM Pacific Standard Time, nneW5@... writes: << You have a few months on me..I am still very new in the learning phase of AIH... >> You know some things I don't. I'll look up MP6 after reading e-mail. I haven't heard that term. I hope I don't seem intrusive or pushey; I certainly don't mean to be. I don't know very much at all about AIH and treatment yet. My gastro doctor felt it was important for me to start Imuran right away, with another drug (Cetocell?) as an alternative considered when I had flareups. I do know that Imuran has its own problems, long-term. The difference in our ages may be a reason that your doctor doesn't choose to go with Imuran for you (I'm 57.) I'm worried about osteoporosis, cataracts, glaucoma, etc. from Prednisone. But those problems one can live with, literally. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 Harper, The only reason I am on prednisone alone @ this point (currently 20mg) is that the diagnosis of AIH was made based on history and positive antibodies, there was no liver biopsy done. The doctor started me on prednisone (60mg)just about 5 weeks ago, and the response was immediate, confirming the diagnosis (this is per my gastro) He advised that they want to see how I end up responding to the prednisone; if they get the dosage down, I continue to respond, and I tolerate it, then that is how they will go. If there are any problems, he will probably add another med..instead of Imuran, he is looking @ MP6. He did advise that before adding MP6, he would probably do a biopsy @ that point. So let's hope the prednisone is all that I need...LOL. I am taking calcium, and, as needed, melatonin for those prednisone nights..so far that (sleeplessness) has been worst side effect for me. You have a few months on me..I am still very new in the learning phase of AIH...and I appreciate your sharing what you have learned and encountered...keep it up! Thanks, nne On Tue, 12 Dec 2000 15:46:55 EST, egroups wrote: > In a message dated 12/12/00 12:13:11 PM Pacific Standard Time, > nneW5@... writes: > > << I am on prednisone only and trying to get the dosage down further. >> > > I'm curious -- do you know why you're on prednisone only? Do you have > trouble tolerating Imuran, etc.? My very, very limited understanding was > that Imuran, which has its own unfortunate side effects at times, might > ameliorate some of the side effects of Prednisone. As I, too, have AIH > (diagnosed May) I'm always curious as to why one treatment is chosen over > another. (I started with 80 mg prednisone in May and was supposed to be > taking 150 mg Imuran -- but a mistake was made in the instructions, so I > wound up with 100 mg Imuran during the high-dosage period. I'm down to 10 mg > Prednisone now, with 100 mg Imuran.) Are you taking calcium/vitamin D, I > hope? I'm impressed by your continuing to work and tend to your family. > Best wishes. > Harper > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 nne, Do you happen to be seeing Dr Mark McGod or McGood or something like that. He is in Greensboro and iI have heard that he is very good. I have considered taking Hunt to see him. I am in Clinton right now staying with a very sick 92 year old aunt that is alone, so i don't hvae time to write much. Also that means i am not home with HUnt where i WANT to be.. I'll write more later. Good luck to you Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 In a message dated 12/22/00 7:07:04 AM Pacific Standard Time, mamacdoo@... writes: I am in Clinton right now staying with a very sick 92 year old aunt that is alone, so i don't hvae time to write much. Also that means i am not home with HUnt where i WANT to be.. Rosemary Best wishes and happy holidays to all of you. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 You might have an idea there, Rosemary. Might be something about NC. Or might be Greensboro, where I am & where you said Hunt was in school. Hmmm..always wanted to live @ the beach, maybe this is the time to start looking..LOL Am seeing a gastro here. Only been seeing him for just under 2 mos (he is my 2nd, or 4th if you count all the different ones I saw in the first practice), and he has treated AIH. We are still very much in the beginning going by the date of diagnosis. How long has Hunt been treated for AIH? You might want to see if the counts go down once he is back home...maybe less stress with not being in school, or just not being in Greensboro. Here's hoping to lower levels for him for Christmas! Hope you have a wonderful holiday! > I think it must just be North Carolina that keeps the alt's and ast's going > back up. Hunt, my son, seems to have the same problems that you do with that. > He has reached normal levels twice in the last year but within three months > the numbers have climbed way back to the thousands again. Hunt is going to > Duke and seeing a hepatologist there who is also on the transplant team. We > get real frustrated with this up and down, up and down. We are at the downs > right now but not normal. HIs were 53 and 118. He has to have labs done every > week right now. He is on 100 imuran and 40 prednisone. The first time we > started with 20 mgs., got to normal, flarup so we went to 40 mgs.. got to > normal, flare up again and so we went to 60 mgs and are down to 40 from that. > I am beginning to wonder if the imuran is doing it's job also. I think since > Hunt is so young, they were very scepical to leave him on high dosages of > pred very long, so they were lowered too fast, but since the first time i > have no clue what is going on. I just > wish it would stabelize. Where did you say you were from and seeing a dr? > > Here's to NC huh? LOL > > Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2001 Report Share Posted January 27, 2001 Joan, I am glad you got a laugh out of that. Actually, me without support is pretty hysterical to see! I am sorry that you are having a rough time in more ways than one; I am sure that with the difficulty you had yesterday, on top of already being anxious..well that would get to you for sure. No wonder you are feeling overwhelmed. While you are waiting for your good news, keep in mind you have a lot of folks here to support you, keep the faith with you. I know when I need that, this is where I will find the support. And if nothing else, we'll find something about this da** disease to make fun of...the best revenge!! What is the saying? You got lemons, make lemonade!! nne > You just made me laugh for the first time in two days. I needed that > support comment. I have been so positive since my diagnoses 11-98 but > this morning I have fallen apart. I am depressed and crying. I hope > this passes soon. I will find out my results 2-15 and I am so scared > that I don't want the day to come soon. > My dream has been to be able to start discontinuing my meds. so the > biopsy was very necessary but I feel like I will be unable to hear news > that does not support that. I think I am just feeling sorry for > myself. > Joan Claffey > NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2001 Report Share Posted February 4, 2001 Thanks nne: I had most of my thyroid removed when I was 11 years old. At the time I was one of the youngest to have this operation done. I never had any more problems until about three years a go. I started to loss my memory and I couldn't think straight. Also was having panic attacks and my doctor ran some test and found out I needed thyroid hormones. It sure made a big difference but I still can't remember the day of the week. LOL Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 Could you tell me about these plans (504, IEP), I will soon be having tests again and I dont know how I can afford them. Before it was all paid for because the state covers emergencies. Thanks for any info. Im sorry to hear about the school teachers, sometimes you think that its just a job to them, that they really dont care. I ran into the same problem here, my son stopped going to school. Its hard to find good teachers. I wish you and Ty all the luck. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Rosemary, At the end of Feb they were ALT 428, AST 198, GGT 414. Will have more blood work @ the end of March, and hope to see that the 6MP is helping. By then I will have been on it for 2 months. Keep your fingers crossed! nne > What are you lft's now? > > Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 nne, thanks for the info. I think I will mention it to his doc but he really has none of those symptoms, well except the fatigue and really, he doesn't even seem that tired at all. Maybe he is just luck. Thanks Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 Way to go nne ! I`m sure next month will be even better. Hang in there. God bless you. Jerry Quote Link to comment Share on other sites More sharing options...
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