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Medical Forum / Diseases and Disorders / Arthritis / July 2005Question about JRA and Lupus
Ok, I usually lurk here but I'd like to pop up to ask a couple questions. First, background: I was diagnosed with JRA at a very tender age, over the years it's done mild to moderate damage to many of my weight-bearing joints, jaw and cervical spine. It's been in remission since my mid-twenties-ish although I've always had seasonal and morning stiffness and aching. Just no flareups unless triggered by inappropriate exercise. I've always been a high-functioning person so the damage that was done to my joints don't (luckily) prevent me from having a career or doing daily chores and such, but I do need regular pain control. I've been seeing a RD regularly for years. I really like the current RD so I appreciate that she's taking an aggressive stance on controlling my pain. Lately she prescribed Arthrotec but it's been burning a hole in my stomach so I stopped it and went back in to see her this morning. She's changing me to Aciphex to restore my stomach mucous and Ultram for pain. No more NSAIDs. One thing I'd like to know is if any of the adult JRA sufferers here are having the same experience I am with medications. It seems like I only respond to NSAIDs like 600mg Lodine twice a day. That's a fairly high dose. But I don't seem to respond to a combination of DMARDS and painkillers. My bloodwork shows very little or no inflammation, low sed rate, etc. If I take only painkillers like tylenol or Ultracet, I have to take ALOT of them. Isn't it odd that although I have little inflammation I only respond to anti-inflammatories? My doc has asked me to get some bloodwork done, this time to check for Lupus. I know sometimes we people who suffer from one degenerative disease also suffer from several of them, so I'm not surprised by her wish to check on this. I would be pretty unique if ALL I had was JRA. Can someone with Lupus tell me if that causes non-specific aching in the bones and joints like I have?  Signature- Sharon "Gravity... is a harsh mistress!" We with lupus are different in all catagories. Meaning our pain is different with each individual. Go to www.lupus.org and see what you can find there. I myself have joint pain along with muscle pain and other things like skin rashes, etc..... What exactly would you like to know? You can email me privately and I will try and answer you. Another site is www.mtio.com that has good information. I also have more sites but a list here is way too long. It also seems to me that a lot of the drugs you mentioned will indeed mess with the stomach. I am surprised you are not taking any drug like prilosec or prevacid which will block acid. Also the new drug Nexium which does that and helps the stomach heal and not irritated. These can be taken with the meds you have mentioned for pain and discomfort, so they will not interfere. The use of tylenol over 4000mg a day is not a good thing. Ultracet has tylenol in it as does darvocet. Then taking arthritis formula tylenol or regular or Extra stength along with it or inbetween adds up to a lot of tylenol. that is very hard and bad for the kidneys and the liver. Watch that number of doseage. Please.... What kind of blood test for lupus did he order. There is no specific test but an ANA will show you that you already have some auto immune disease. There are other tests, so do you know which he ordered? All the test, plus symptoms give a doc some kind of picture. If you have 4 of 11 signs then maybe just maybe you have lupus. It is really hard to diagnose. I just feel your medications are not set right for you. But hey IT is my opinion and I am not a doc. Let me know will you Sharon. janers Hi Sharon,,,, I do not see any answers to your post and so,,,,,, I am going to give you my thoughts about dealing with Lupus. It is so serious that a person really should not listen to what anyone but the best doctors have to say. I just do not know anyone that can give advice about Lupus unless it is someone that has it and has lived with it and even then,,,, what the doctor says would trump that. I do wish you good luck with finding answers that end up being a plan for you. Lupus is serious and should not be taken lightly. Harv > Ok, I usually lurk here but I'd like to pop up to ask a couple > questions. First, background: I was diagnosed with JRA at a very tender [quoted text clipped - 41 lines] > tell me if that causes non-specific aching in the bones and joints like I > have? Hi Sharon. I've had JRA since age three. On and off but then consistent since age 13. Now 34 so it's been a long time. Anyway, I used to have symptoms very similar to you - very little inflammation but alot of pain. No indicators on the blood test other than an occasional elevated sed rate or ANA. Damage has also been only mild to moderate. however, even though I had very little inflammation, damage still occured, pretty quickly too. So you can't make assumptions based on the inflammation that you see. I've had surgery on my wrists and when the surgeon opened up my hands (I had partial fusions done), there was clear inflammation and damage that could not seen from the outside. From that point on, the RD's were much more aggressive in treatment and listened more when I talked about pain.... I certainly am not a typical case and have baffled the RD's. One different thing from you is that I have responded well to DMARDS. First on plaquenil, then with mtx. now on enbrel w/ mtx. And in the past 2 yrs, my blood tests have finally indicated the Rheumatoid factor and consistently elevated ANA and sed rate. Up until this time, however, there was always the lurking question of whether I could have an atypical form of lupus. so I know how you are feeling... No real advice though, sorry.... Just wanted to let you know you're not alone.... feel free to email me ---alisonamsb@nc.rr.com alison > Hi Sharon. I've had JRA since age three. On and off but then consistent > since age 13. Now 34 so it's been a long time. Anyway, I used to have [quoted text clipped - 17 lines] > > alison Hi Alison, thanks for that. It does help to hear from someone who's had a similar experience. It sounds like your JRA turned into regular RA? I've always wondered if mine would do that. I figure the odds are in favor of it! I'll keep on with the doctor's regimen and tests and see what we find. Signature- Sharon "Gravity... is a harsh mistress!" I had forgotten to mention that when I was going through infertility problems, - miscarriages - the drs. tested me for all the lupus indicators, because that can cause miscarriages by blocking blood supply to the uterus. But it all came up negative. I was very relieved of course. But at the time I had almost wished it came back as positive b/c not only would I finally have an answer in terms of the JRA, but I'd be able to treat the infertility appropriately as well... It's so hard not having any answers. I hated it... Having the rheumatoid factor come back positive (it was only weakly positive, BTW) provided a good deal of relief knowing I had answers. So I know exactly how you feel... In the end, my treatment didn't change, but it was still nice to know regardless. alison In article <KoqdnViYbM5U9kPfRVn-jg@bright.net>, "janers" <rojakort@bright.net> writes: > We with lupus are different in all catagories. Meaning our pain is > different with each individual. > > Go to www.lupus.org and see what you can find there. I myself have joint > pain along with muscle pain and other things like skin rashes, etc..... Thanks for the link, I'll check it out. I have never had any muscle or skin or nerve pain. Always only skeletal aching. Basically I have very mild symptoms of RA except that I don't flare up. > It also seems to me that a lot of the drugs you mentioned will indeed mess > with the stomach. I am surprised you are not taking any drug like prilosec > or prevacid which will block acid. Also the new drug Nexium which does > that and helps the stomach heal and not irritated. These can be taken > with the meds you have mentioned for pain and discomfort, so they will not > interfere. I've taken lots of NSAIDS over the years with no GI problems. Lodine only gives me mild gas. Arthrotec is the first one I've taken that's really bothered me enough to quit it. > What kind of blood test for lupus did he order. There is no specific test > but an ANA will show you that you already have some auto immune disease. > There are other tests, so do you know which he ordered? All the test, plus > symptoms give a doc some kind of picture. If you have 4 of 11 signs then > maybe just maybe you have lupus. It is really hard to diagnose. All my life my bloodwork has always been consistent: negative RA, slightly higher than "normal" sed rate, positive ANA. So these never surprise me. This time the doc's requested some different things. I don't remember them off hand and I left the lab order in my truck. I'll try to make a note of them and reply back again. > I just feel your medications are not set right for you. But hey IT is my > opinion and I am not a doc. Yeah, my doctor and I both agree with you. It's kind of a struggle getting the meds right, as it usually is. But I think it's weird that I don't really seem to have severe RA symptoms or blood chem, and yet I only respond to anti-inflammatories. Last year the doc thought for sure I had ankylosing spondylitis because of the cervical vertebra damage I have. Maybe I do, but I don't really have symptoms of that either. Now she's checking for Lupus. I think she's trying to get a better handle on exactly what's going on with me. For all I know, I'm a perfectly normal adult with JRA. But although they know how JRA affects kids now, I haven't heard anything about how they are when they've grown up. - Sharon "Gravity... is a harsh mistress!" I am also a JRAer, but have only been in medicated remission, so I can't speak to what happens when you remit as you seem to have done in your twenties but continue to have pain. One thing I do remember reading (I can not just now supply a link) is that often JRA is seronegative meaning without the presence of the Rheumatoid factor or with only mildly elevated ESR. Lab results, in that case, are not useful in identifying or quantifying levels of inflammation. I would think that pain indicates either joint damage or a continuation of the RA. It is not unusual to also have comorbid OA, and that may be the case with you. Clearly a full work-up is needed to determine what is going on. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. |
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