Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Carole, I probably mispoke when I said I wasn't sure my rheumy would agree that there was anything wrong with the combination of imuran and plaquenil. I really don't know if she would agree with that or not since I've never been on imuran. Also, my case is sort of the reverse of yours since I was diagnosed with lupus over six years prior to being diagnosed with AIH. I had been on plaquenil most of that time with the exception of a year or so in 1999-2000 when my old rheumy told me I could quit taking plaquenil. The new rheumy thinks being off plaquenil is one of the reasons the acute panc hit me so hard in Jan 2000 and partially responsible for the year of health problems in 2000. I finally decided in Sep 2000 to go back on plaquenil because it dawned on me that maybe my lupus was contributing to my health problems. In Dec 2000, I applied for disability retirement. The beginning of Mar 2001, my health took a complete turnaround and I made the decision to stop the disability application process. The day after I decided to withdraw my disability application I got a letter saying the disability was approved. After much prayer and soul searching, I turned the disability retirement down. I enjoyed about 16 months of relatively good health until the acute pancreatitis returned with a vengeance in July 2002. Anyway, I switched to my currrent rheumy on Jul 3, 02 (15 days prior to the panc attack). I was feeling so healthy that I almost didn't go to the appt, but it had taken me six months to get in to her, so I went to the appt convinced that she was going to tell me that I really didn't have lupus and the other rheumy was wrong. The new rheumy assured me that I do have lupus, it just seemed to be under control thanks to the plaquenil. She told me to NEVER, EVER again stop taking the plaquenil. She was also not happy that routine labs done in March and April revealed elevated liver enzymes and low platelets - neither horrendous, but definitely outside the normal range. She was not happy that the previous rheumy had never tested me for the antiphospholipid syndrome which can cause low platelets and a clotting disorder which leads to a 50% increase in the risk of blood clots, strokes, and heart disease. She was especially not happy when I remembered to tell her that in Aug 2000, it was accidentally discovered that I have a 60% stenosis in my right renal artery, but everyone told me it was no big deal until the blockage reached 70%. She asked me what my doctors were doing about monitoring the blockage and I said, "Oh, they are watching it." She looked at me as if I'd lost my ever lovin' mind. I then started laughing and told her that I was being sarcastic, but that the words of my nephrologist were simply that 'we would keep a watch on the renal artery blockage' and I figured he must have some sort of x-ray vision since he didn't seem to feel further testing was necessary! She then started laughing and just shook her head. Anyway, it ended up that I do have the antiphospholipid syndrome and I am now on coumadin to hopefully prevent the blockage from progressing and and other blockages from forming. Boy, I totally got off on a tangent. On the sun issue, according to my current rheumy, the sun is positively dangerous for people with lupus. I have only had the lupus sunburn rash about 3-4 times so I assumed I was one of the lucky ones with lupus who really didn't have a problem with the sun. Even when I got the rash, it wasn't that bad. It just looked like a sunburn with tiny little bumps that maybe itched a tiny bit. It was weird because it would stay hot to the touch (like a sunburn) for up to 3-4 weeks. Anyway, at my list appt, my rheumy let me have it for being in the sun. She told me that even though I don't have many skin problems from sun exposure, that the sun is doing damage to the inside of my body. She told me that I absolutely must keep my sun exposure to a minimum. I'm not sure that I'm willing to do that for life, but for this summer I am doing what she has told me in regard to staying out of the sun. Some people with lupus will get a rash to the point of actually being covered in sores from just an hour or so of sun exposure, so I could have things worse! I am a sun/water lover. We have an 18 ft runabout boat and I like to swim, water ski, and scuba dive. Kind of hard to do those things and stay out of the sun! However, at least until things with my health settle down, I'm going to do my best to follow her advice. Talking about being jinxed, on the day I got the results from my liver biopsy, I had an appt with my rheumy. She said, "I'm so glad we've been able to keep your lupus pretty much under control with plaquenil and we haven't had to have you on long term prednisone." It was about 2 hours later that I had an appt with my GI. He had received the biopsy results via fax only minutes before my appt. He told me that the biopsy revealed that I have an autoimmune liver disease that is consistent with the type of liver disease that they sometimes see caused by lupus. (it was only when I read the biopsy results myself that I saw that it said I have AIH, which from everything I've read is absolutely not caused by lupus) Anyway, when he told me the liver disease I have usually responds well to treatment and the treatment is prednisone or Imuran, I just cracked up laughing! So much for keeping me off of prednisone! Take care and try to get some rest. One of the members of my lupies group sent the following for help with aching muscles and bruises. You might give it a try in your bath. Some Lupus patients become very susceptible to bruising while on steroid therapy. To help shorten the life of bruising under the skin ..use hot compresses of water and epson salt ..if you can get sea salt, that is even better.Soak the bruised area for 10 minutes 3-4 times a day.I make up a soaking solution of:1 cup sea salt1/4 cup of lavender flowersand 1/2 cup of rose petals to one-half gallon of hot water.I start with boiling water to bring out the oils in the flowers, then Ilet the water cool a bit before applying to my skin.If you cannot get the flowers at your local herb shop, 2 drops each of lavender and rose essential oil can be substituted.The sea salt helps to bring natural body fluids to the area beingsoaked. By doing this, the bruising under the skin is flushed withfluids and is hydrated. This allows the bruising to break apart quicker.The flowers in the hot water have natural oils that are released by the hot water. The oils help to eliminate the dryness of the skin caused by soaking in salt. I use a washcloth soaked in the solution and place the washcloth over the affected area.This recipe is a concentrated solution for small areas of bruising, but this same concoction can be added to a bathtub of hot water for a general body soak to help with sore aching muscles.Hang in there, W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 W, First off, please do not be worried about saying the wrong thing to me - I am a tough girl. If I don't understand, I'll ask. But I know you are probably feeling a bit sensitive about how to say things with things being the way they are on here - but you can't bother me, so please don't worry. But I too find myself reading and re- reading what I write afraid some one will totally misunderstand what I was trying to say or meant. But I am not perfect, so I just hope others take that into consideration. I am not on prednisone any more, thank goodness. I was on atleast 40 mgs for three years. Did a lot of damage, but also did a lot of curing too. I guess I should probably be back on a low dose since I have multiple autoimmune diseases. But I am just not ready for that, and my doc knows he won't win that argument yet. I do have a book titled " Coping With Lupus " , and am reading with my mind wide open. Want to understand all the suggestions on handling pain. If you know of any other good books on it please let me know. Love, Carole K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Carole, Coping with lupus is a good book. I am a member of a wonderful online group. lupies . One of the members has a very good web site with lots of info. http://www.itzarion.com/ She also periodically sends 'refresher course' e-mails to the group on lupus. If you join the group, you can read the refresher course posts on the board. They are very informative. Glad to know I didn't offend you with anything I said! Yes, I am a little extra sensitive about causing a stir these days! I do wish we could just all go back to playing nice! I had my say and will simply ignore any additional posts that are argumentative. W Quote Link to comment Share on other sites More sharing options...
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