Not sure if it's Lupus or RA

Hi guys/gals,

New to the website. I have been having pain in my wrist and ankles, then in the next two years I experienced swelling in my legs, hair loss, heavy periods (sorry guys), hot flashes, extreme thirst, and extremely cold then flashes of heat, extremely exhausted (actually thought I may have mono). Doctors originally said the pain was due to the amount of weight I lost. Went to physical therapy but nothing seemed to help. Have been dragging my feet to go to the doctor. Went to the OB they did an exam and said everything is fine. They recommended that I go to my primary doctor to have a wide panel of test done. Hormone level, thyroid, check for diabetes, etc. Those test came back fine. I did find out however two years ago my ANA levels were elevated and they did not notify me or have me retested. My primary recommend that I go to a RA doctor. I had the blood test done last Friday. Don't have the results yet but the dr prescribed me with prednisone. I have been experiencing major headaches, bodyaches, and mood swings. I called the dr. He said to discontinue taking the medication. I did not feel a significant difference on the prednisone. Not enough to justify taking it for the 30 days it was prescribed. He immediately said well if it's not helping then it's obviously not Lupus or RA like I expected. Should I be seeing a different type of dr? Should I continue the medication, it has only been 5 days.... I am at a lose. I hurt my hands hurt I feel swollen and miserable. Any advise would be great!

9 Replies

oldestnewest
  • Wow you sound like me but I now have more symptoms. what dose of prednisone were you on? It takes a fairly high dose to make me feel better and it takes awhile to work. My doctors gives asteroid shot mix of a fast and Long lasting steroids. That is my miracle drug but in prednisone I have to give it time. When I have a flare and go on it I know it will take a couple days to a week for the headaches to go away but they do for me. I don't notice Body aches from the prednisone I am usually in a lot of pain everywhere when I start. I do not know the dose you started with and you need to go with what your doctor says but not sure if you took it long enough to see if it would work. I can't speak for anyone else but for me on the correct dose after the adjustment period which is the first couple days I feel great on steroids. The shot works better than oral prednisone for me with less side effects. Might want to ask your doctor about that.

    It was my wonderful response to a steroid shot for a rash that help lead my doctor in my diagnosis. When I returned to him 3 weeks later I told him I had not felt so good in years. No muscle or joint pain, I had more energy than I had in 2 years and felt good. That was when my doctor suspected an Inflammatory problem instead of fibro and chronic fatigue. Just not sure you gave the steroids enough time.

    Let us know what your blood work shows when you get the results.

  • So I received the results from my blood test and it looks like my white blood cell count is elevated 11.2 Ref range [3.5-10.5] My MCHC level is low 31.8 Ref range [32.0-35.5] and my platelet count is high 445 Ref range [140-390] it looks as if everything else was within the normal range. I started taking the prednisone in once dose instead of the two so I am taking 10 mg once a day. It seems to be working a little better. I still feel a little achy and swollen but no more "pain". Any suggestions on what to do?

  • I would continue with the prednisone and see if the rest of your symptoms get better. Did the doctor put you on plaqinel? I love to read Ros's responses because she is so knowledge. I had symptoms and a high ANA titer the first time I went to a Rheumatologist. He told me he thought it was early lupus but diagnosed it as unspecified connective tissue disease because I did not meet all the criteria of lupus at that time. Over the past 5 years I have developed more symptoms so no fault of my doctor but the disease itself can show itself over time. The treatment is the same for many of the connective tissue diseases. It is very important to follow up regularly with your doctor so they can observe the changes overtime. It is important to have blood work done regularly and most important to follow your doctors direction on the medication. I once stopped my medication and quit going to my doctor and ended up very sick and having to get another referral to see him. I learned my lesson. To be honest even with plaqinel and a low dose of prednisone I never feel like I did before I was sick. I have learned that controlling the disease can save your life and even if you the medication is not helping it might be more than you realize. I hope you do not have SLE but be safe and work closely with your doctor or a doctor.

  • Thank you for responding. He put me on prednisone as a "test" so I will continue to take it until he says not to. I am not currently taking anything else. I know there is no simple disgnosis for this disease but I am just tired of feeling sick and tired. My family and coworkers say they are trying to be understanding but then roll their eyes. I am a little frustrated. My doctor is out of town for the next ten days so it's more waiting which I am already not good at :-(

  • I understand your frustration and remember there are always people o. this site who if nothing else understand.

  • Thank you!!!

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    I am very sorry to read that you have been suffering pain and being unwell for several years. I can understand your concern and frustration. I do think you should continue with the medication since 5 days is not that long!

    Blood tests can and do vary over time. This is why blood tests have to be regularly repeated, even if it seems a waste of time, they are important. I do not wish anyone to have a diagnosis of SLE. Diagnosis is a long process and many women have reported that it has taken years or even decades, which is not encouraging. The point I am making is the importance of seeing a good rheumatologist with experience in lupus. Many doctors have not treated lupus patients and do not understand that diagnosis includes clinical observation over time. Most patients do not present with positive ANA, malar rash and lupus nephritis: with these symptoms anyone can diagnose lupus! Most present with "unspecific" symptoms, which means seeing a patient and caring doctor who wants to find out what is wrong so s/he can help you. Even without a diagnosis, your symptoms need to be treated.

    You refer to weight loss. Were you dieting? Was your loss significant because this can affect the body.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!

    Ros

  • So I received the results from my blood test and it looks like my white blood cell count is elevated 11.2 Ref range [3.5-10.5] My MCHC level is low 31.8 Ref range [32.0-35.5] and my platelet count is high 445 Ref range [140-390] it looks as if everything else was within the normal range. I started taking the prednisone in once dose instead of the two so I am taking 10 mg once a day. It seems to be working a little better. I still feel a little achy and swollen but no more "pain". Any suggestions on what to do?

  • You need to find out about inflammation. The ESR will tell you if this is elevated and showing inflammation. You will also need the result of C-Reactive Protein (CRP). If this is high, you have an infection. If within normal limits, you have signs of inflammation.

    Interpretation of blood tests requires a physician and usually more than one blood test since they can vary. In terms of "low" MCHC, the doctor would need to determine whether you have had a heavy period, lack of iron etc. An elevated white count simply means you have disease fighting cells (leukocytes) eg infection or inflammation. Even drugs can elevate

    Usually, it is better to take the corticosteroids in 2 doses - one morning and one evening as this means your body has a more even dose. However, if your experience is different, go with what works for you.

    I understand you want answers, but with autoimmune diseases, this can take time. What is important is that you are receiving medication to help you feel better.

    With good wishes,

    Ros

You may also like...