Do I Have Lupus?

Posted , 5 users are following.

I have Inflammatory Bowel disease, more specifically Ulcerative colitiis. However, for the longest time I have had inflammation in other area's of my body and my doctor said that my symptoms don't make sense for UC. I either have Crohn's disease or Lupus. I had Vasculitis, some years ago and I have had just random inflammatory issues that don't seem to make sense for IBD. I had a fever and such bad pain in my knee's I could hardly walk. My immune system over reacts to every situation. I had the flew some years ago and it lasted two months or the symptoms didn't go away for two months. I have irregular heart beats and they can't figure out why. I asked my current doctor to test me for Lupus, but the problem is I am on Prednisone and it fouls the inflammatory tests, so she wants me to come off of it, but I am scared that I will get very ill if I do. I have chronic pain all over my body, some times in the morning I feel like I was hit by a bus. My whole body hurts and it is tough to sleep. I don't really know what is wrong, but my doctor is kinda slow at figuring it out. Any idea's would be helpful.

1 like, 10 replies

Report / Delete

10 Replies

  • Posted

    Well Craig not for anyone on here to diagnose but Lupus does seem entirely possible with those symptoms. Not sure why you need to stop steroids to prove it but maybe there is a good reason for that. What do your blood test results look like on steroids? Anything in your inflammatory markers that is enlightening?
    Report / Delete Reply
    • Posted

      That is the issue at hand. My markers are low and it is because of the Prednisone, but they have found inflammation in my colon with biopsies, so there is inflammation, but it is being kept low by the steroid. I am not excited to come off of it to see how bad things will get. If I have to I will buy Prednisone on the internet. I have had a flare of IBD that was really bad and I was bed ridden for a month as a result. It took being on Prednisone for about two weeks to be able to function again, but my current doctor wants to see for herself and I am not ok with that. I have had two other doctors think that I may have Lupus, but they said the Prednisone is fouling up the testing, however there are several tests for Lupus and it takes four of them to show a posative result in order to diagnose it. I really want to know if I have it as it can be very serious and I read that Prednisone is one of the medications used to treat it. I am not asking for a diagnosis, but feedback from those that know about Lupus. In the past the only way they have been able to figure out what is wrong with me is when things get so bad that I end up in the hospital. That is what happened with the IBD. I told my doctor that I wasn't well and he noted that I had been losing a lot of weight, but I didn't have a lot of symptoms other than weight loss and some pain in my intestine. Then the bleeding started. I was passing small amounts of blood in my stool for a while, then it became a lot of blood. At that point I was so weak I went to the hospital and they reffered me to a gastro to have an emergency colonoscopy done where they found IBD in my colon. I just don't want that to happen with Lupus. The damage could be life treatening and swift. It didn't take long for me to go down hill from the IBD, so I am trying to be careful. I am hurting so bad at times, I am tired of feeling bad. It just drains you.

      Report / Delete Reply
  • Posted

    Hi Craig,

    ​These inflammatory/auto immune issues are awful, and they all can mimick each other, and are so hard to diagnose because of that.  I have Sjogrens, and Lupus and Sjogrens are very close, as are so many others.  Are you seeing a Rheumatologist, or a regular doctor?  What you really need is a specialist, being a RA...Rheumatologist that specializes in these type of issues.  They need to get to the bottom of the issue, so they can get you on the proper meds.  Many times just prednesone alone will not be enough, you may need the other meds to help you control the pain and effects of which ever illness you end up having.  I know what you are going through, and I sure hope they get to the bottom of this as soon as possible, but finding the right doctor to help you is the key, so if you have to, get a second, third opinion if you have to!!  Please keep us posted as to how things turn out for you, we are here for you if you need to talk!!  Best of luck to you!!  Blessings!

    Report / Delete Reply
    • Posted

      IMy grandmother had Sjogrens. It was tough on her later in life. She had a tough time eating as her salivary glands didn't work anymore. Lupus, depending on how severe it is can kill. I am worried that I have Lupus. I have IBD and that has been proved, but it may be Crohn's disease or I may have UC with Lupus. Did you have Vasculitis with the Lupus? I had a fairly bad case of it. From my belly down both legs I had large red spots that started out small, but grew in size. It was really bad and the doctor put me on 60 mg of Prednisone to help it. It still took two weeks to start getting better. I know that if one has one immune disorder, then it very likely they will have another, so it may be that I have Lupus with my IBD. As I said I was told by two doctors that I may have Lupus, mainly because they can't explain the wide spread inflammation that is going on. If I have it I will get Prednisone any way I can. Even if I have to treat it myself and purchase it online. I have found some online drug stores that sell Prednisone. If it wasn't for Prednisone I would probably be dead by now due to the Vasculitis. I really want to stay on it. I will make an appointment with a Rheumatologist ?, to get tested. I am seeing a gastro for my IBD and maybe it isn't her territory, but it can effect the digestive system. Thanks for the input and I hope that your illneses are under control. These immune diseases can be hell. I am in so much pain from whatever is going on, but my doctor discounts it because she can't see anything wrong. It is so frustrating.

      Report / Delete Reply
    • Posted

      Oh yes, aside from the lack of saliva, my Sjogrens is at the other end of the spectrum, it has gone inside to my organs.  I have the vascuitis as well, and have those awful spots you speak of.  I have issues with blood clots in my legs, and have to be careful.  I also have peripheral neuropathy in both of my lower legs and feet.  It has damaged my kidneys and liver, as well as my entire digestive system, and stomach.  It has really been something going through this, awful doesn't even explain it...as you well know!!!  Of the meds they start you on is plaquenel which works well for most people, and it did for me, but in the first 3 months, it caused damage to my eyes, you must see an opthamologist every 3 months to check for damage, so I had to be taken off immediatey.  The damage does not reverse, once it is done, there is nothing can be done. Luckily, it is nothing I notice.  They then put me on methotrexate, which really did nothing to slow the progression of my RA, but helped a little with the Sjogrens.  However, it caused my hair to fall out, and awful skin lesions, and made me feel all over just sick.  They went to injections, which were worse, so we stopped it completely.  I forgot...I have also been on prednesone from the beginning as well.  They have since put me on imuran which seems to be helping, with less side effects.  BUT, I am having more flare ups, and more flare ups in specific parts of my body, like a foot, a wrist, my neck.  Very strange, and unlike before, or it's just getting worse.  I see my RA doc in a couple of weeks, and will have more questions for him.  I also see a gastro doc for all my other issues, liver, tummy/intestines, esphogeal issues.  My gastro doc had to put me on a med called protonix, and a low dose of amitriptiline to keep my stomach calmed...as I am always queasy 24 hours a day, and nevere feel like eating.  This has helped me greatly!!  I am no longer feeling queasy, or have that awful bloated feeling...thank goodness!  My kidney doctor has had to work like a crazy man to get me back on the road to recovery...it has taken over a year now, but I am finally better.  The Sjogrens caused my adrenal glands to go crazy, causing my blood pressure to skyrocket, ane we couldn't figure out what was going on for a long time, test after test, until things got bad, and they sent me to him.  I have been in kidney failure for a year now, but everything is working right now, with the right meds from him!!!  You will most likely find you will have many different "Specialist" to get you in shape!!  Well, if you are lucky, maybe only 1 or 2!!!  When I go see my regular internist, they just shake their head, can't believe how many specialists I have.  But, hey, I am on this side of the grass, so I guess that's a good thing!  LOL  And I am for the most part functioning pretty well now!!  It sure takes a long time though!!t sure is frustrating like you said....just because some of these darn doctors can't find something, or discount things, does NOT mean it isn't there!!!  It is the RA doctors though that specialize in this area, and these darn things do not always show up for a very long time!!  A good RA doc should know that.  I sure wish you luck, and hope you get some relief soon!!!  XOwindow.post_1489884905892_16 = function(win,msg){

      win.postMessage(msg,"*"wink;

      }window.post_1489884926582_49 = function(win,msg){

      win.postMessage(msg,"*"wink;

      }

      Report / Delete Reply
    • Posted

      That is awful, but glad to hear all is better. Medications are a funny thing, because as you said Imurane is helping you, but for me it put me in the hospital. I had a fever and my knee's hurt so bad I couldn't walk. It went away as soonas a day after I stopped the imurane. They had never seen a reaction to it like I had and I said well now you have. It wasn't able to weaken my immune system, instead it had the opposite effect. My immune system was geared up for a fight and when it couldn't attack the medicine it went to battle on me. The more I think about all the weird inflammatory issues that I have I got to think Lupus makes more sense than anything else. Man it is awful. I get nausea all the time and now I am having pain when I swallow and my throat itches. Talk about odd. God I am strange. I just so want to be normal, but I have always known that I was different. Not really in a good way, but I am defective. It makes me unique and I am fine with that, afterall sometimes it's kinda fun to watch the look on a doctors face when they don't understand what is going on with me. However I don't care much for being sick, but I still manage to hold down a full time job. Even when I am ill. I have come in to work before sweating profusely and a coworker said are you sick? I said yea, but don't worry I am not contaigous. Sometimes I get this severe muscle spasm in my rectum that hurts so bad I have gone into shock from the pain. It is crazy bad. I have passed 6 kidney stones so far and I would rather go through that again than that horrible muscle spasm. I would rather have Crohn's than Lupus, but every day it looks more like I have wide spread problems and my immune system is super strong. I rarely get colds or flew. The last flu I got was ten years ago.  I am super scared of blood clots as well, what can I do about it? Do they put you on thinners? That is so risky as well. I want to live to be at least 80, but it isn't looking good. Oh well, what can you do.

      Report / Delete Reply
  • Posted

    Hi craig84609

    The steroids can cause the pain all over your body especially in the morning on getting up.i would imagine your doc will start tapering you off the preds...you have to do it very slowly otherwise you will get very ill. You do not mention what dosage you are on...

    Report / Delete Reply
    • Posted

      Thanks for the response, but I have been like that since before the Prednisone and I am on a low dose of 10mg per day. If I had it my way I will never stop taking it as it has been the only thing that has worked for me so far and I have tried most everything that I can take other than the biologics. I can't take any of the Sulfa drugs as I have had a near fatal reaction to sulfa, so they are out. Mesalamine didn't work at all and Immuran put me in the hospital, so not much left. I will be hanging on to Prednisone like a life raft in the middle of the ocean. If I have to I will buy it online.

      Report / Delete Reply
    • Posted

      Hi craig84609

      The steroid suppresses your adrenals and cortisol so if your cortisol is too low or too high it will cause pain in your bones and muscles. They also suppress your immune system. You will need a blood test to find out what your cortisol levels are....obviously the pred is managing the inflammatory bowel disease..this is why doc doesn't know what to do because if he/she tapers you off preds it will get rid of your pain eventually...it hangs around for a while..BUT your inf bowel disease will not be managed..it is a vicious circle...perhaps doc may give you strong painkillers for the pain...you will have to discuss all this with your doc....best wishes...

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up