What is it?

Okay so I've been going to Rhuemy Doctors for over 15 years. Been on Plaquenil all this time plus on prednisone off and on. Now since I have moved, this new Rhuemy Dr says "it really sounds like I have Fibromyalgia. Not saying that I may have Lupus but without Blood work she couldn't tell me. So after 8 tubes of blood she will let me know what the findings will be. I am 63 yrs old. I am so confused. I get sick at just passing people, rashes on body, loss of hair,extremely tired even after sleeping. Has this happened to anyone else? I also get sores in mouth, always a sore throat. Please help!! xx

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  • It seems to me that more and more doctors just want to read blood tests. I've never had very large titers of ANAs, so it's often a bit of a struggle going through the reasons why I don't have "only fibro." But since I'm also 63, and have been struggling with this for almost forty years, I know that plaquenil helped me greatly in the 80s when I first took it. So does prednisone if I have a flare. And also methotrexate really helps most of as far as pain is concerned. I also have elevated SED rate and CRP (markers of inflammation). If the same is true of you, than that would support autoimmune. If not, and the drugs don't help you, then it might be possible that you have fibro.

    There are lists of the criteria for lupus. I think you need 4 out of 11, although they seem to give more credence to blood tests. You can also go through them, and compare it to your symptoms. Do you have copies of your blood tests over the years?

    That is can also be helpful in determining what you have.

  • Hi ann,when you beginning had lupus?how old you since youtake plaquenil?my daughter 9years old diagnose had lupus but the shymptom is low platelet cause her nose bleeding.doctor told me give her plaquenil and prednisolon for tappering.

  • I was 26 when I first got sick. And at first it was a low fever, nausea, fluish feeling and I dropped weight like crazy. It was about six months later when I got a bad sunburn and then I had joint pain. It took me seven years to find a rheumatologist who would try me on plaquenil, which did wonders for me.

  • How many years you take plaquenil untill now?

  • I took it for 7 years starting in the mid 80s. I wasn't making much at my job, and my rheumy had told me I could experiment with not taking it, so I quit and I felt the same. Also, I only took 200 mg. Then I got quite ill in 2012, and it took another year to get back on it. I've been taking 400 now for 3 years, but not as great results this time.

  • sounds like lupus

  • Well I am in my 25th year of not sureness.. 1997/2001 Lupus positive. Since then stage 3 ckd, pleurisy, hypertensive heart disease, fibromyalgia, seizures, calcification on the brain, non alcoholic cirrhosis of the liver, raynards, facial butterfly rash and a further extensive list. But negative blood tests just continuous rise in creative levels.

    Lots of meds but no steroids. My cardiologists has said stay away, my nephrologist has said you need them, my rhemies plural are split.

    My mind is crazy just don't know what to do totally fed up.

  • Ask your nephrologist about alternative immunosuppressants to steroids that could be better for your heart etc. eg. micophenolate mofetil or Azathiaprine ?

  • Hi this reaction by some Rhuemy doctors is not uncommon. I realise now that many I have been to do not believe in "lupus" and I had one doctor actually ask of the Professor I saw for lupus "when is he retiring? isn't it about time he did" Yes this Rhuemy doctor actually said that....with other witnesses present! So....I have just carried on knowing that I do have lupus and fought long and hard to make sure the doctors I see give me the correct meds/treatment I need or I walk with my feet and start again somewhere else! Yes it is hard and tiring I know exactly what you are going through. I had one Rhuemy doctor from a Soton hospital tell me there was nothing he could do and that I would have to put up with things basically......this after my husband had asked some very relevant questions......some doctors just do not like patients asking anything or questioning things. This said I have come across some excellent doctors who are really on the ball and help in any way they can but it really is difficult when you move and have to start again. My advice is try out a few different doctors and find the one that suits best. Good luck.

  • It is exhausting. I have to find a new rheumy because I just went on Medicare. I hope I find a good one.

  • So so true, similar things happened to me.


  • Hi Tinky

    Just to tell you I have fibromyalgia & had for many yeArs. Although my bloods always show inflammation I have never been told i have Lupus. I have been told I have RA but after being on Salfazalzine for a while was then told, No it's arthritis, nerve damage & fibromyalgia but I have all the symptoms you say you have.

    I think the problem is that all of these things are so closely related and similar symptoms come with Fibromyalgia, Arthritism, Lupus, ME, RA etc.

    I had the worse sore throats ever when I went through the menopause & because I was quite young it wasn't picked up on but when I had to go to hospital while on holiday because it was so bad, the first thing the doctor said, was this can be common with menepause after having to endure penicillin injections. When I got home, got blood test & yes menepausal.

    Although yes like you say can be symptoms of Lupus.

    My hair is falling out in handfuls & i have had to buy hair clip ins because it is so thin. I'm also constantly tired, never sleep properly. AlwAys agitated with pain, muscle spasms & can't do much at all without being exhausted.

    Take Amitriptyline, Quinuine, Pregablin, Solpadol. I have also at times had steroid injections and taken prednisone.

    Hope this helps In someone, even if it's to let you know your not alone.

    Luv Jan xx

  • Hi Tinky52,

    If you would like a free information pack then you can download or send off for one here: lupusuk.org.uk/contact-us. This has a booklet with information about the diagnostic process.

    We also have a number of publications available on our website at: lupusuk.org.uk/publications that might be of interest to you.


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