3 years and still no change

I was diagnosed just over 3 years ago put on pred. Since then consultant has put me on an to reduce front 30 mg to zero. Each attempt has failed. Currently on 20mg however swollen hands and knees and thighs. Back and shoulder pain is unbearable at wits end. Consultant says have to grin and bare it. Go says up dosage!! So fed up as in the past 6 months developed moon face and put weight on. Wondering if acupuncture would help

10 Replies

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  • I am so sorry you are having such trouble. I found acupuncture a complete waste of time. Since I tried it I have read Trick or Treatment on alternative therapies which is fascinating. Do you have GCA or PMR? If it is PMR the pain should be sorted out on such a high dosage of pred. Have you been tested for vit D deficiency?

  • Hi 6306,

    Is your Rheumy sure of your diagnosis ?

    A couple of us have been re diagnosed with spondyloarthropathy which can present with Polymyalgic type symptoms and is different from the " classic " ankylosing spondylitis.

    Does your pain worsen at night? Might be worth asking for a scan of your back and shoulders.

  • Hi 6306

    It seems strange that if you've been on pred all this time that you are just now noticing a moon face and weight gain? Usually those symptoms occur fairly soon after starting the drug, especially not years. I found acupuncture not to be helpful. What testing have you had? A good friend had an initial dx of pmr but had the swollen hands, wrists and knees. After several tests they changed the dx to a very rare form of arthritis.

    Alison

  • Went through a faze of having Accupuncture and yes it did help . However ,sounds as though you need to withdraw a lot slower off of the prednisalone . I have been dropping half miligram at a time . Have been at 9 mg for 2 to 3 months now and have blood tests every 8 weeks . My doctor won't let me drop until levels are stable .Have never been without pain but do have a lot of relief at times . The Bowen massage has been sujjested to me , and some people say it is very good . Has your specialist tested you for Rhumatoid arthritis , to rule that out , and other related problems . I have been told to expect to be on tabs for at least 2 to 3 years if not longer .

    I wish you well on your journey ,but give your self a big hug , you will get there . It is also important to relax as much as possible , perhaps you are trying to carry on regardless and your body is saying slow down . Best wishes Carol

  • I'd get a second opinion on all of this. Doesn't sound like the symptoms we all tend to get.

    Keep us posted.

  • Have you had your vitamin D checked? It was three years before mine was found to be deficient. Since getting that sorted I have been able to reduce to 5mg pred.

  • 6306, before considering acupuncture or any other alternative therapy, it sounds as though you might well benefit from seeking a second opinion and confirmation that you do in fact have PMR, especially with your present consultant; just telling you "to grin and bear it"! I would have ditched that one long ago!

    If you do have PMR, It might simply be that you have been advised to reduce from your starting dose too soon and in too large amounts, leaving the inflammation to persistently simmer underneath an insufficient dose. We would need more information here to try and further advise you from our experience.

    However, there are many other pain-producing conditions affecting muscles and joints that can mimic the pain of PMR, including rheumatoid arthritis, fibromyalgia, and deficiencies in Vit B12 and Vit D. All these and others should have been ruled out at diagnosis

    You need a second opinion.

  • Hi 6306 Like you going into my 3rd year PMR-GCA Have been down to 8mg in June stayed there to long and ended up having a big flare,So up to 40mg now 19,10,15 am on 25mg and trying to Reduce,Rheumatologist put me on Azathioprine to help six weeks ago,Like you I have painfull knees that I have had all the time I have been taking Pred,Water related,Have always had some pain still in arms hips and shoulders,And more recently have a weird Burning sensations in the top of my Back with vains that I have had before,And bad pain in lower back that I have not had before,Have a very big moon face,And have put on a lot of weight. Am better on Pred But have never been Pain free,The side affects of meds is Better than the PMR Pain.

  • I think you may also benefit from a few sessions of Bowen therapy as it might help those other pains you describe. They could be due to spasmed muscles - as I explained a bit in my reply to 6306 it is something that is common alongside PMR. Bowen has achieved a lot of pain relief for a lot of people on the forums and really is worth trying.

  • I would suggest that you need to find a different consultant for a second opinion and/or a more realistic approach to your problems.

    The PMR we discuss here typically responds well to a dose of 15-20mg/day pred. If the symptoms DON'T respond significantly to that dose, further investigation to rule out another form of arthritis or vasculitis should be done.

    6306 - you need a rheumatologist who isn't fixed on repeating something he has seen doesn't work and one who is rather more concerned about your pain. If this is PMR, the reduction is not from starting dose to zero come what may - it is to find the lowest dose that manages the symptoms acceptably (i.e. as well as the original starting dose did). If your rheumatologist is forcing you to reduce to zero, of course you will relapse once you get below the right dose for your disease at the time. PMR is a chronic illness that disappears for about a quarter of patients in under 2 years - but they are at a higher risk of relapse than others. About half of patients need pred at some dose for up to 4 to 6 years - and the rest need pred for much longer, sometimes at a low dose for life. Ideally that longer term pred dose would be well below 10mg but everyone is different, you might need more for a time before getting to a lower dose later.

    I'd also suggest that a few sessions of Bowen therapy might help those other pains you are complaining of. There are a couple of things that commonly are found alongside PMR and which cause severe back pain and other symptoms. Myofascial pain syndrome is one and can be helped by local cortisone injections into the trigger points in shoulders, mid and low back. Physiotherapy to mobilise the trigger points can also help. Both those approaches tend to need a doctor to approve them. Bowen therapy can also make a big difference - and you don't need a doctor to approve. It is very gentle so is more appropriate for people with PMR than even physiotherapy. If there hasn't been at least some improvement after 3 sessions then it won't help and you don't have to keep spending on it. If you deal with what I call PMR-add-ons in a different more targeted way you can manage with less pred for the real PMR problems.

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