Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 I meant to welcome you to the group with your original post but got "Prednisone crazy" and deleted it. So here it is. Welcome. Unfortunately, it is difficult for some family members to understand what we are going through because "We look so healthy." There is no way to explain the chronic fatigue and unpredictability of this crazy illness. You go to bed feeling fine and wake up feeling like you have been run over. You cannot understand what happened over night to make you feel so bad. It's part of the illness and for me probably the most frustrating part. It is difficult to make plans to do things. You think you will be OK and when the time comes to go you feel horrible. You are doing the right thing. This disease will not go away. Although, the meds are not easy to take and have a lot of side effects the illness untreated will most likely be worse. With time, hopefully your family will understand. We all here do. Vent to us. We all have our good and bad days. You will not find a more supportive group. I hope things settle down for you soon and again WELCOME. in Virginia AIH, Cirrhosis, Portal Hypertension and too many more to mention. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 Jan, that is a great explanation! Heck it works for me….sometimes, there ARE things that are best left unsaid! Debby [ ] Hi ....everyone here has given good advice. But your post, wow, brought back some memories. Thank God I didnt listen eventually to my family. Initially I did and I absolutely agreed with them all that no way was I going take such dangerous medication....we were going to fight this blah blah with diet, pills, minerals & other potions and lotions! You name it I tried it. I only came to my senses when I came to, after a few months of my own treatment, in hospital with IVs and my specialist almost blue in the face, blowing a gasket at me. It wasnt until I really had done some serious damage to my liver, that I collapsed and realised what a complete wally Id been. Im telling you this because you need to access some good information, have a good listening doctor and be able to explain what is happening to your family. The word hepatitis, as Debby or , pointed out has connotations of being viral....autoimmune is not viral and it cant be caught or passed on to anyone. Recently I joined a quilting group, they all know I suffer from illhealth but few people know what it is. They asked me, everything went quiet, and I hesitated in saying AIH because like hundreds of other times I knew the possible reaction.....like disposing of my tea cup in the bin....this time I quietly said I had a blood disorder (I left out which leads to inflammation of the liver (hepatitis). Now this may be stretching the truth but sometimes a little white lie is OK in my book. hee hee Love Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 Maybe this doctor just doesnt feel it is a serious disease? Id find another who would take it more serious. I never had anyone of Kelsey's doctors, all 6 of them treat this as something mild. I feel some doctors react this way caus ethey are not educated on the disease. They are worried they dont know what they should know. Id seek another doctor personally. The first week we were in the hospital with Kels I was so scared, helpless, and in a daze. Once I found a suport group after getting home, reading, educating myself, researching the drugs I felt more empowered to help her become well. I am confidant that my daughter will get well to the point where at times she will be in remission, the doctors feel the same. Trish > Hi .....I was stunned, shattered & full of disbelief when first dx. I felt like you, damned if I do, damned if I dont and in the middle it didnt bear thinking about. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 Hi , You are not alone.....I think most all of us in the group had the same reaction as you are having regarding the diagnoses of this AIH disease. I was also very concerned about going on Prednisone and then on the Imuran, but when My Dr.'s explained what would happen if I did not take these medications to "Control" the progression of this AIH then I realized that I had no choice. That was when I joined the group and learned so much from all these good people about taking the medications we need to hopefully control this Liver Disease. When I first joined the group and asked what I thought was silly questions I was told by some of the more knowledgeable ones in the group that no question is to silly to ask. So, do not be afraid to ask questions about your concerns. You will find this group to be very, very understanding and so supportive. You take care, . Shirlee (Wa State) From: dssll2@... Sent: Tuesday, October 07, 2003 6:25 PM Subject: [ ] Hi everyone I have been reading the posts and I have to say as newly diagnosed with AIH this has been really scarey. The Dr told me not to worry and quit reading stuff on the internet. BUt you all have been through this and are going through this. I would think that you know what this is like. I am so afraid of this disease. I have never had anything like this before and with everything that I read my life is going to be miserable. I have only been on treatment for a couple of weeks and I am so afraid that it won't work. Everyone here is so positive even with all you are going through. My heart is just pounding knowing that I haven't even experienced half of what is coming my way. I am so scared that I know I am blubbering in this e-mail. I am afraid of what the prednisone and Imuran are doing to my body and afraid of what would happen if I weren't taking it. Does this fear ever go away? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Dear , I think a doctor you feel comfortable with and who will talk with you is like gold! You are fortunate that he has dealt with other AIH patients, many drs. you'll hear about don't have a clue. Your prognosis sounds good and have a good dr. to keep on top of it and those are very important. Hang in there, we're here for you through our good days and whiney days and days when we just can't carry on. Take care. Amy (I missspelled last time!!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 , That is good news!!!! Thanks for letting us all know that the medication is working for you!!!!!!!!!!!! Take care, Shirley [ ] I have good news I am so excited. I had my first blood tests to check my liver enzymes last Friday and I got a call from my DR today saying that my enzymes are down and he is very pleased. They didn't have the report in front of them so I don't know how much but I will call tomorrow and find out. I am so glad that the treatment is working. I have been so afraid that it wouldn't. Thank all of you again for all your support. Ya'll have made this so much easier for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 Hi , I am so happy for you that your lft's have come down with the Prednisone and Imuran. Just make sure that you wean off the prednisone very slow. Dropping down on the Prednisone to fast can cause alot of side effects. Take care and good luck! Shirlee (wa state) [ ] Re: my test results The dr faxed over the enzyme levels to me. Ths AST is down to 38 and the ALT is down to 40. He said when they are both at 20 he will start taking me off the prdnisone. I cna't believe they came down like that so fast. I know they can go up anytime but I am still so excited. I just want off the prednisone. Thanks for your words of support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Great news, ! It's always good when they want to reduce the meds, especially prednisone Keep on top of the belly bloating. It's normal in liver diesease It can mean some fluid retention among other possibilities but should be able to be controlled if necessary. I told my doctor that after 3 years of looking 9 months pregnant - I was definitely ready to deliver and get it over with Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 - I always have my doc wean me off the pred, only once I went through withdrawl and believe me it was not pretty. I know where you are coming from, hang in there it will get better. H. mhe3053904@ aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 She isn't doing very well. She is making it to school, but just barely. The rash was everywhere last night. It was her third night of sleeping in the lazyboy. We give her the antihistamine, and it helps a bit. We talked to the ped rheumy and he called in some steroids, but n wants to wait another day or two. Last year this happened, but not quite this bad, and she toughed it out-and then got better. I think some of it is stressed induced for she has finals next week. I am hoping she improves by next Friday. This is the worse rash since onset. She doesn't look too bad(systemic kids get these black circles under their eyes), and she is eating well. We are just going day by day at this point. She is getting old enough to be in on some of the decisions on her medication, so we will wait to see what tomorrow brings. (n, 15 in 6 days, systemic) Hi :How is n doing today? Anything kicking in and working on her rash and itching? I hope today was a better day for both of you.Take care.Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 :We will continue to pray for n. I hope today finds her doing better. Bless her heart. and Rob 14 Spondy On Tue, 13 Jan 2004 18:49:50 -0800 "WILLIAM PRICE" <bc.price@...> writes: She isn't doing very well. She is making it to school, but just barely. The rash was everywhere last night. It was her third night of sleeping in the lazyboy. We give her the antihistamine, and it helps a bit. We talked to the ped rheumy and he called in some steroids, but n wants to wait another day or two. Last year this happened, but not quite this bad, and she toughed it out-and then got better. I think some of it is stressed induced for she has finals next week. I am hoping she improves by next Friday. This is the worse rash since onset. She doesn't look too bad(systemic kids get these black circles under their eyes), and she is eating well. We are just going day by day at this point. She is getting old enough to be in on some of the decisions on her medication, so we will wait to see what tomorrow brings. (n, 15 in 6 days, systemic) Hi :How is n doing today? Anything kicking in and working on her rash and itching? I hope today was a better day for both of you.Take care.Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Hi : I hope tomorrow is a better day for n. She sounds like one strong young lady trying to wait it out before starting the steroids. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 , people who can't tolerate Imuran or who don't find it effective may be prescribed 6MP or Cell-Cept. Urso helps some people with AIH, although its primary use is for other liver-related diseases. If you don't have a reference book, you probably will benefit from Dr.Palmer's "Guide to Liver Disease.". If you can't find it locally, go either to Amazon.com or to liverdisease.com. It will cost about $12. Be sure to get the 2004 edition, not the earlier version. Best wishes. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Dear , I'm sorry for your pain - it's so hard to try and remain hopeful at this point. I am one who can not take immuran. I have never been taken off prednisone since I started it and have found a fairly stable point right now at 7.5 mg daily. We tried one day 7.5 and next 5 for awhile but my liver numbers started bouncing too much so I'm up to 10 for a week and the will settle a 7.5 for now. I also am on plaquenil for lupus but my liver doc also says it helps the liver so that has worked for me , too. I started at 200mg 2x daily. We/ve tried a few times to reduce that but it doesn't work well for me then. I've been on that for 8 years and prednisone for 4. I know there are a couple of other meds, but I haven't used them yet. Hope you find some relief soon! Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 In a message dated 8/19/2004 4:36:06 AM Pacific Standard Time, writes: My husband is against me takkng > any medication, he thinks you can cure yourself. Anyway, Thanks again for the > reply. cindy , pleasesee the quote below. I've given the citation for its source. Please note BOTH sentences: Most people with AIH have very poor prospects without treatment. I've read, but don't have the source immediately available, that 50% die within five years without treatment. I believe that's in Palmer's "Guide to Liver Disease" and a reference book published by the Mayo Clinic, but I'm not positive of that. This is important: studies show that people who respond to conventional treatment have a generally normal lifespan. The little red spots you describe may be spider angiomata, which are associated with liver disease. Harper "Without therapy, most patients die within 10 years of disease onset. Treatment with corticosteroids has been shown to improve the chances for survival significantly. Indeed, the life expectancy of patients in clinical remission is similar to that of the general population." <http://www.emedicine.com/> eMedicine World Medical Library Author: Unnithan V Raghuraman, MD, Honorary Assistant Professor, University of Alabama School of Medicine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 I never received the article you had talked about. If you sent it maybe you could try again? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Thank you for your support, I apprecaite it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 : With Rob's hip injection he started feeling better about 2 days after. Felt great for about 3 weeks, then it started wearing off. In the meantime, we were able to regain ROM with exercise... Rob is definately getting better on Enbrel!!! We went BIKE RIDING last night! He hadn't been able to bike ride since his diagnosis. I was riding, and he passed me, and it was all I could do to hold back the tears, seeing him pedaling away in front of me... it was an awesome moment. Its not Monday, and I am only allowed to ask about his pain on Mondays, so I can't wait till next monday to find out his pain level. I am on cloud nine though to see him obviously better, even though I can't ask yet... He's been on the Enbrel since 8/12. Let us know how n is doing. Hope the wrists are much better. and Rob 15 Spondy On Thu, 9 Sep 2004 12:00:01 -0700 " WILLIAM PRICE " <bc.price@...> writes: n is fine today. She wore her wrist braces all day yesterday so the wrists could absorb the steroids. She went to school today with them, but I bet she will take them off. The doctor suggested to use them the first 24 hours. So far there is no change. He said it might take up to three weeks. Has anyone heard of this, or had experience on how long they take to work? (n, 15, systemic) Re: Robbie's Newest Problem > > > > > > > Dear Val, > > > > > > I couldn't help feeling some of your exhaustion while reading > about > > > the latest. You must be feeling like " when will this ever > > > end?????!!!!! " I don't have experience with the rectum thing, > but > > > hope and pray that it resolves itself quickly!! > > > > > > Hugs, > > > > > > Stacia and Hunter 8 systemic, iritis > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Super cool!! I think we all know how you feel. I guess this disease does teach us to treasure those small moments. n says that her wrists feel a tiny bit better today. Still no motion, but we have fingers and toes crossed. (n, 15, systemic) Re: Robbie's Newest Problem > > > > > > > > > > Dear Val, > > > > > > > > I couldn't help feeling some of your exhaustion while reading > > about > > > > the latest. You must be feeling like " when will this ever > > > > end?????!!!!! " I don't have experience with the rectum thing, > > but > > > > hope and pray that it resolves itself quickly!! > > > > > > > > Hugs, > > > > > > > > Stacia and Hunter 8 systemic, iritis > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 : I am so sorry to hear that n is not doing well. Darn that arthritis! Rob is flaring some now too. I guess its the time of year? Hope she improves soon. Take care. and Rob 15 Spondy On Tue, 9 Nov 2004 07:41:22 -0800 " WILLIAM PRICE " <bc.price@...> writes: Thanks, it does. Remicade > > > > > > We went and saw Caroline's rheumy yesterday. It was a really great > > appointment! Yeah! All her joints look amazing. Also, for the first time > in > > a year her sed rate is NORMAL!!! She has determined that the Enbrel is > > obviously working for all her joints. Unfortunately, it is doing nothing > for > > her eyes. We are going to try cyclosporine, but are hesitant about the > > success of it. We are also unsure if Caroline can tolerate it since she > has > > such sensitive organs. > > > > As a side note, her rheumy said to me that she is not sure if Caroline was > > diagnosed correctly in the beginning and that she has always suspected > that > > she was actually systemic and not poly. I didn't know how to take that, > but > > she said that nothing would have changed in her treatment with either > > diagnosis. > > > > Lastly, we talked about Remicade. We are approaching the one year point on > > Prednisone and Pred Forte drops. That is our rheumy's max for these drugs. > > She says she needs to be completely off both by the one year mark > (January) > > and that we need to find something to supplement it. Cyclosporine might > > work, but she's not confident it will. She also doesn't think that Enbrel > > will be enough without the prednisone, so we are left with Remiciade > > infusions. The problem is she has never given them to children Caroline's > > age and she isn't sure of how many other rheumy's have tried it. Does > anyone > > have any thoughts or history with Remicade on a three year or less?? > > Caroline will be three in January so I think that is when we would start > > it... > > > > Thanks everyone! > > > > Alia and Caroline, age 2, poly and uveitis > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2004 Report Share Posted December 23, 2004 : How did n's injections go?? Hope she is doing well tonight. and Rob 15 Spondy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2004 Report Share Posted December 24, 2004 n did well with the injections, and now we just have to wait and see if they will work. She had five fingers done in all, her right wrist, right knee, and right foot. We are giving mtx another try starting next week. It will have to be the pills , for the injectable is too hard to come by. If that fails, then it will probably be on to kineret. Her systemic symptoms are under control, she has good energy and all, it is the joints that are really acting up. I wish all a Merry Christmas and I hope next Christmas we all get the gift we really want above all else. I have been waiting six years now for my gift of remission or a cure. It will come. (n, 15, systemic) Re: > > > : > How did n's injections go?? > Hope she is doing well tonight. > and Rob 15 Spondy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Dear Janet: I find it very difficult to read your posts when they are all in capital letters. I think also, in internet " etiquette " it is considered the equivalent of shouting all the time. Its just easier to read small letters. I hope you soon find some answers for Toriann. It sounds like you're having a really hard time getting doctors to take it seriously, something some of us can really relate to. I went through some of your other emails... I hardly know what to say except I hope your persistence with the doctors pays off soon. One thing... if you said how old Toriann was, I missed it. Its just you asked about the importance of a ped. rheumatologist or an adult one... there are a lot of issues with juvenile arthritis that differ from adult issues, so yes, a ped. specialist there is usually the best way to go. I hope you find a doctor willing to put some time into helping Toriann soon. Lynn mom to Mickey, 10, sojra On Jan 23, 2005, at 7:44 PM, janet wrote: DEAR CINDY NICE TO MEET YOU, IF YOU BACK TRACK YOU WILL FIND A POST UNDER THE SUBJECT " NEED HELP " by janet aka momaof340 THAT WILL TELL YOU ALL, UNFORTUNATELY WE HAVE NO DIAGNOSIS AS OF YET. I KNOW SHE WILL HAVE FEVERS IN THE EVENING BUT WHEN I CHECK HER AT NIGHT HER BODY FEELS CLAMY NOT REALLY FEVERED, SOMETIMES I WONDER IF IT ISNT SOMETHING TO DO WITH THE ADVIL, I KNOW WHEN I TAKE ADVIL OR TYLENOL IT CAN GIVE ME HOT FLASHES, NOT SURE WHY....MMMM THANK YOU HUGS JANET Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 In a message dated 4/11/2006 12:56:11 A.M. Eastern Standard Time, sonia1md@... writes: was sure hoping that we would hear a positive report today regarding n and her platelet count. Please know that we continue to pray for her and hope to hear a good update soon! God Bless, (aundrea 10 systemic jra) I keep getting online for a bit here and there hoping for a positive update on n too. Keeping prayers going her way. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 , We are thinking about you and n. Where can we Give the Platelet's? What Blood type is n? Here we are O+. My 2 sister's are donor's. They are also Bone Marrow donors too. Back a few year's 's Dr mentioned Bone Marrow and if we had a Family member who would Volunteer. Well 2 sister's did. We had 1 Match. improved so now we know just in case we do have a Match. My sister next to me is called at times when some one needs Platelets. Robbin Quote Link to comment Share on other sites More sharing options...
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