Guest guest Posted July 8, 2001 Report Share Posted July 8, 2001 , To answer your question, my docs found the AIH first and confirmed with biopsy. Later I developed more lupus like symptoms like joint pain, sores in my mouth, rashes and sun sensitivity. The gastro sent me to a rheumatologist and after blood tests he said I had lupus which was damaging my liver (unlike most lupus patients who have problems with their kidneys, skin, etc.). There is some literature to suggest that having lupus and AIH "separately" is very rare. I just think it is all autoimmune and related. My lupus symptoms have greatly diminished and I'm not sure that the rashes etc weren't from the medications in the first place. My rheumy insists that my blood tests reveal lupus but I just don't know. I am still learning. I recently had a major setback with my liver in June and am back on Prednisone (30mg), Imuran (100mg) and I am taking Plaquenil for joint/muscle pain. Taking the Plaquenil may explain why my lupus symptoms are better. Chicken or egg? I don't know. Any other info anyone has on this lupus/AIH complex I'd be much obliged. in FL (AIH/Lupus related/?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2001 Report Share Posted July 21, 2001 Interesting to read all the these posts regarding separate gastroenterologists and rheumatologists...I think the medical office I go to has the right idea, the gastro doctor and rheumatologist both work out of the same office and refer and consult patients between each other. And, surprisingly, it's all through a HMO. My Rheumatologist, wouldn't make a move without me going through the liver biopsy and seeing what the gastro doctor recommended. I still see him, but, my gastro doctor is treating me primarily right now, and then if I improve with liver...the rheumatologist will evaluate at that point. They seem to think that the AIH may be the cause of the Rheumatoid arthritis, or at least, a big part of it. Anyhow, it is very convenient to have them both easily accessible and comforting to know that they are working together on what they believe is best overall for the patient. > Thanks for responding Don, > > I'm really surprised they didn't find your diabetes earlier. I haven't been > on prednisone often in the past couple of years, but do get depo medrol > shots quite frequently (sometimes every month) for the past 4 or 5 years. > Does the Mayo clinic in sdale, AZ just as good as the one in MN? I > will be moving to NM and did live in AZ for ten years so I have friends > there I can stay with. I really hope that some of my problems are caused by > medication instead of the SLE destroying my my system. It's pretty amazing > how close some of these autoimmune diseases are. I guess their biggest > differentiation is which organs they choose to attack. > > Debbie (Tommy's Mom) > > > [Original Message] > > From: Don - Terradon Unlimited <donhanson@m...> > > < @y...> > > Date: 7/20/01 8:01:29 PM > > Subject: RE: [ ] Re: Lupus and AIH > > > > Hi Debbie, > > > > In my case, my metabolism problems were complications of long term > > prednisone use. The prednisone caused diabetes, high blood pressure, > > and > > glaucoma. My GP hadn't diagnosed those complications and chased > > symptoms > > with other medications. By the time I was seen at Mayo, my heart and > > liver > > were surrounded by fat from the diabetes, my lungs were struggling > > against > > the increased fluid retention in addition to all of the other > > problems. By > > carefully changing my meds, and closely following the results, I'm > > doing > > much better. But, since mine was largely medication complications, > > it was > > easier to manage. > > > > Working in a vacuum, my original rheumy assumed SLE because of all > > of the > > symptoms fit, including bloodwork. But, taken in total, it was > > determined > > that the SLE symptoms were being caused by the AIH and complications > > from > > prednisone. > > > > My recommendation is to go to someplace like Mayo, where all of the > > specialists work together and communicate with each other. It was my > > hepatologist at Mayo who coordinated everybody. And, it's their > > philosophy > > that all specialties work together to agree to diagnosis and > > treatment > > plans. > > > > Don > > Terradon Unlimited > > Creative Embroidery > > http:// www.TerradonUnlimited.com <http://www.TerradonUnlimited.com> > > " People who ask me how we can still have such a positive attitude > > after all > > we've been through, have it all wrong.We've been able to get through > > all > > that we have BECAUSE we have a positive attitude " . Don Hanson 8/2000 > > > > > > [ ] Re: Lupus and AIH > > > > > > > > > , > > > To answer your question, my docs found the AIH first and > > confirmed with > > > biopsy. Later I developed more lupus like symptoms like joint > > pain, sores > > > in my mouth, rashes and sun sensitivity. The gastro sent me to a > > > rheumatologist and after blood tests he said I had lupus which was > > damaging > > > my liver (unlike most lupus patients who have problems with their > > kidneys, > > > skin, etc.). There is some literature to suggest that having > > lupus and > > AIH > > > " separately " is very rare. I just think it is all autoimmune and > > related. > > > My lupus symptoms have greatly diminished and I'm not sure that > > the rashes > > > etc weren't from the medications in the first place. My rheumy > > insists > > that > > > my blood tests reveal lupus but I just don't know. I am still > > learning. > > I > > > recently had a major setback with my liver in June and am back on > > Prednisone > > > (30mg), Imuran (100mg) and I am taking Plaquenil for joint/muscle > > pain. > > > Taking the Plaquenil may explain why my lupus symptoms are better. > > Chicken > > > or egg? I don't know. Any other info anyone has on this > > lupus/AIH > > complex > > > I'd be much obliged. > > > in FL (AIH/Lupus related/?) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 Jackie, I have both lupus and AIH. I was diagnosed with lupus in Oct 96. For the most part, it seemed relatively mild. Initially I was on both plaquenil and anti-inflammatory meds, but have not had enough joint pain to warrant anti-inflammatory meds since around Oct 01. For me, the fatigue of lupus seemed to be the worst part. The plaquenil helps tremdously with the fatigue, joint pain, and skin rashes that can go with lupus. The only time I was ever on steriods for lupus was an occasional medrol dose pack round or a cortisone injection. I used to have occasional night sweats which I assumed were because of the lupus, but haven't had them lately. I also have problems with mouth ulcers, which is part of lupus. The best thing for the mouth ulcers is to mix liquid benadryl and mylanta about half and half. Swish it around in your mouth and swallow it or spit it out (whichever you prefer). I found this usually has the mouth ulcer totally cleared up by the next day. The benadryl helps with the inflammation and numbs the mouth ulcer a bit. They mylanta helps to lower the acidic level in your mouth. I was doing quite well in July 2002, when I ended up in the hospital with acute pancreatitis. I'd had pancreatitis in 2000 and that was a rough year, but things finally got better. From July to December 2002, I was in the hospital about 15 times with severe right upper quadrant abdominal pain, nausea, and vomiting. Some of the episodes included elevated pancreas enzymes and liver enzymes, but many episodes only revealed elevated liver enzymes. Finally, after months of talking about it, my GI did a liver biopsy on Dec 27, 02. I was told I have AIH on Jan 6, 03. I was started on 20 mg of prednisone daily on Jan 8th, but my prednisone has now been tapered down to 10 mg a day since Apr 5th. I still deal with RUQ abdominal pain, nausea, and vomiting on a regular basis, but the prednisone has helped somewhat with the fatigue and just basically feeling better. Have you been tested for the antiphospholipid syndrome? It causes a clotting disorder which leads to an increased risk of miscarriage, blood clots, strokes, and heart disease. 50% of people with lupus have the antiphospholipid syndrome evidenced by a positive lupus anticoagulant or anticardiolipin antibodies on blood test. I wasn't tested for the antiphospholipid syndrome until Jul 02 - almost 6 years after being diagnosed with lupus. I had a hysterectomy in 1993, so my pregnancy days were long gone. I am pretty sure that if the antiphospholipid syndrome is discovered prior to pregnancy, miscarriage can normally be prevented by taking a low dose of asprin through the pregnancy. The sun is potentially dangerous for people with lupus. Many people with lupus get what's called a sunburn rash. It can vary a rash that looks like a sunburn, is hot to the touch, and has tiny little bumps that may or may not itch. The lupus sunburn rash remains red and hot longer than a normal sunburn. Some people have it so bad they actually get sores from the sunburn rash. I've only had a few mild cases of the lupus sunburn rash, so I assumed it was okay for me to be in the sun. Not so, according to my rheumy. She says the sun causes damage to people with lupus even if they don't get a rash from the sun. As with AIH, when you have lupus it is important to listen to your body and get extra rest when your body screams that it needs it. As with many illnesses, lupus can range from nothing more than a mild annoyance to a life threatening disease. The majority of people with lupus die with lupus rather than from lupus - just as with AIH. My GI said that my lupus caused the AIH, but everything I've read says that's not the case. So far, I have not had any kidney damage, which is associated with lupus about 50% of the time. Since you are wanting to try to get pregnant, some of the meds that might be used for lupus are out for you at this time. Plaquenil has been VERY helpful for me, but it takes about 3-6 months to get the full effect. My rheumy says they have now discovered that plaquenil not only helps with the joint pain, fatigue, and rashes - but that it also can prevent or minimize the organ damage that so often goes with lupus. The one thing to keep in mind is that things may not always be as bad for you as they are today. Lupus flares can often come and go. The important thing is to listen to your body and rest when you need to. Take care, W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 but since then i can hardly > waslk for my joints aching, i wake in the morning soaking in > sweat,nausea has come back, my allergies are worse, my energy has > been zapped. I wondered if anyone else has these problems, expecially > the sweating. Yes, Ma'am, I have been having the sweats really bad. I wake up sweaty and I can just be sitting on the sofa and start sweating. I am also having trouble getting to sleep at night. I have been plaged with the joint pain and muscle and soft tissue tenderness from the beginning. Bummer! Hugs, ginge4 AIH'99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 but since then i can hardly > waslk for my joints aching, i wake in the morning soaking in > sweat,nausea has come back, my allergies are worse, my energy has > been zapped. I wondered if anyone else has these problems, expecially > the sweating. Yes, Ma'am, I have been having the sweats really bad. I wake up sweaty and I can just be sitting on the sofa and start sweating. I am also having trouble getting to sleep at night. I have been plaged with the joint pain and muscle and soft tissue tenderness from the beginning. Bummer! Hugs, ginger AIH'99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 Dear , thanks for your reply, your symptoms sound very much like mine. Especially the nausea and vomiting. I have never found out what is causing it. Sometimes i`m feeling fine, the suddening i`m running to the bathroom. Thankfully that has improved for me also with the prednisolone. I havn`t yet seen a rhumatologist, so far i`ve seen a gastentrolist and immunologist. I am very allergic to lots of things, i havn`t been able to put anything in my bath, or conditioner on my hair for years. It makes me feel so ill. Fatigue is a big problem for me also, i had to finish work, as i was so exhausted all the time. Sometimes i would just come home and cry, it took me all my energy to drag myself up to bed. I feel guilty about not working, but i feel it has helped me to get some of my strength back. I think i tested negative for the clotting problem that can cause miscarriges etc, a small blessing i`m thankful for. Do you have long periods where you feel well? I really look forward to taking the plaquinel, it sounds great, i hope it works the same foe me. I`m not keen on trying the stronger ones like cyclosporine. Imuran made me so ill i felt like i was dying. I am trying Bach flower remedies at the moment, and they seem to be helping, especially with my state of mind.I have tried every herbal remedy i think. But i keep trying..... hoping. Take care. God bless jackie -- In , " Weston " <karenw@p...> wrote: > Jackie, > I have both lupus and AIH. I was diagnosed with lupus in Oct 96. For the most part, it seemed relatively mild. Initially I was on both plaquenil and anti-inflammatory meds, but have not had enough joint pain to warrant anti-inflammatory meds since around Oct 01. For me, the fatigue of lupus seemed to be the worst part. The plaquenil helps tremdously with the fatigue, joint pain, and skin rashes that can go with lupus. The only time I was ever on steriods for lupus was an occasional medrol dose pack round or a cortisone injection. I used to have occasional night sweats which I assumed were because of the lupus, but haven't had them lately. I also have problems with mouth ulcers, which is part of lupus. The best thing for the mouth ulcers is to mix liquid benadryl and mylanta about half and half. Swish it around in your mouth and swallow it or spit it out (whichever you prefer). I found this usually has the mouth ulcer totally cleared up by the next day. The benadryl helps with the inflammation and numbs the mouth ulcer a bit. They mylanta helps to lower the acidic level in your mouth. > > I was doing quite well in July 2002, when I ended up in the hospital with acute pancreatitis. I'd had pancreatitis in 2000 and that was a rough year, but things finally got better. From July to December 2002, I was in the hospital about 15 times with severe right upper quadrant abdominal pain, nausea, and vomiting. Some of the episodes included elevated pancreas enzymes and liver enzymes, but many episodes only revealed elevated liver enzymes. Finally, after months of talking about it, my GI did a liver biopsy on Dec 27, 02. I was told I have AIH on Jan 6, 03. I was started on 20 mg of prednisone daily on Jan 8th, but my prednisone has now been tapered down to 10 mg a day since Apr 5th. I still deal with RUQ abdominal pain, nausea, and vomiting on a regular basis, but the prednisone has helped somewhat with the fatigue and just basically feeling better. > > Have you been tested for the antiphospholipid syndrome? It causes a clotting disorder which leads to an increased risk of miscarriage, blood clots, strokes, and heart disease. 50% of people with lupus have the antiphospholipid syndrome evidenced by a positive lupus anticoagulant or anticardiolipin antibodies on blood test. I wasn't tested for the antiphospholipid syndrome until Jul 02 - almost 6 years after being diagnosed with lupus. I had a hysterectomy in 1993, so my pregnancy days were long gone. I am pretty sure that if the antiphospholipid syndrome is discovered prior to pregnancy, miscarriage can normally be prevented by taking a low dose of asprin through the pregnancy. > > The sun is potentially dangerous for people with lupus. Many people with lupus get what's called a sunburn rash. It can vary a rash that looks like a sunburn, is hot to the touch, and has tiny little bumps that may or may not itch. The lupus sunburn rash remains red and hot longer than a normal sunburn. Some people have it so bad they actually get sores from the sunburn rash. I've only had a few mild cases of the lupus sunburn rash, so I assumed it was okay for me to be in the sun. Not so, according to my rheumy. She says the sun causes damage to people with lupus even if they don't get a rash from the sun. > > As with AIH, when you have lupus it is important to listen to your body and get extra rest when your body screams that it needs it. As with many illnesses, lupus can range from nothing more than a mild annoyance to a life threatening disease. The majority of people with lupus die with lupus rather than from lupus - just as with AIH. > > My GI said that my lupus caused the AIH, but everything I've read says that's not the case. So far, I have not had any kidney damage, which is associated with lupus about 50% of the time. > > Since you are wanting to try to get pregnant, some of the meds that might be used for lupus are out for you at this time. Plaquenil has been VERY helpful for me, but it takes about 3-6 months to get the full effect. My rheumy says they have now discovered that plaquenil not only helps with the joint pain, fatigue, and rashes - but that it also can prevent or minimize the organ damage that so often goes with lupus. > > The one thing to keep in mind is that things may not always be as bad for you as they are today. Lupus flares can often come and go. The important thing is to listen to your body and rest when you need to. > > Take care, > W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 > but since then i can hardly > > waslk for my joints aching, i wake in the morning soaking in > > sweat,nausea has come back, my allergies are worse, my energy has > > been zapped. I wondered if anyone else has these problems, > expecially > > the sweating. > > > > Yes, Ma'am, > I have been having the sweats really bad. I wake up sweaty and I > can just be sitting on the sofa and start sweating. I am also having > trouble getting to sleep at night. > I have been plaged with the joint pain and muscle and soft tissue > tenderness from the beginning. Bummer! > > Hugs, ginge4 AIH'99 oh dear, you sound just like me, i`m not the only one. hugs jackie. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Thanks for the web address , i will look it up. I have been on one web page, i think it was called joannes lupus page, that was interesting. There are letters describing peoples experieces with Lupus. It has answered a few of my questions. I knew it wasn`t my liver that was causing all the problems. It`s been an upward struggle with doctors,at first they told me all my problems were depression. Since then i have been diagnosed with aih, lupus, endometriosis, reynauds. I don`t know how you managed to do so much work, i`m glad your enjoying your retirement, you deserve it. take care, with love jackie In , " Weston " <karenw@p...> wrote: > Jackie, > Yes, it is entirely possible with lupus that you will have days when you feel 'normal'! Prior to getting sick in July with pancreatitis, I was doing great. I had spent the previous year doing a tremendous amount of business travel. I was on a month long trip on Sep 11, 2001 and ended up stranded in Japan. I spent the first part of 2002 gone two weeks and home two weeks. The travel was draining as was catching up on the office work that couldn't be done via computer when I was traveling. However, I handled all the travel well, until the acute pancreatitis returned in July 2002. I don't know when the AIH began. The first that I know of my liver enzymes being elevated was in Mar 2002. After months of elevated enzymes, a liver biopsy was done on Dec 27th and I found out I have AIH on Jan 6, 2003. From July to now, I haven't had very many days when I have felt normal, but I don't think lupus is the main cause for that. I'm dealing with lupus, recurrent pacreatitis, AIH, type 2 diabetes, and a clotting disorder. It's hard to know which problem causes the fatigue and other symptoms I experience. > > I have felt relieved since I began my retirement. At least I no longer have to feel guilty every day about not being able to make it in to work or not being as productive as I once was when I did make it in. Of course, I feel guilty about the reduction in our income, but we'll manage. > > I am a member of a lupus support group through . I've gained a ton of knowledge about lupus through the group. You might want to check it out. The name is lupies. > > W Quote Link to comment Share on other sites More sharing options...
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