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Hi everyone. I was recently diagnosed with multiple myeloma through blood tests and Bence Jones test. but symptoms that first took me to the doctors were pains for about 5 yrs in my shoulder blade muscles. first was told i have polymyalgia so was put on prednisalone steroids, but after being on them for 15 months and my symptons still there, i have been told they want to try me without steroids so i am being weened off them..

I am being seen by oncoligy for my myeloma but no treatment as yet doc says my bloods are stable but they are going up but only very very slightly. My worry is what do i have to expect in the future

Many thanks for any input

Sue

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4 Replies

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  • Hi , I was diagnosed in July 2012 and went on the Myeloma 11 clinical trial straight away which involved taking chemotherapy at home and having two weeks in hospital for a bone marrow transplant in January 2013 .

    I've had four good years of remission but have recently relapsed so I'm now on the Myeloma 12 clinical trial and booked in for another transplant later on this year.

    But don't worry too much , it's possible to live with myeloma for a long time .

    My doctor has been treating someone for 20 years .

  • Hi Sue

    Sorry to hear that you have been diagnosed with myeloma.

    They say that it is a very individual disease and that no two patients are alike. My experience so far having myeloma for 4 years is that this is true.

    Myeloma UK are the best people to give advice, they have plenty of publications and nurses on the helpline. I would also suggest that you contact your nearest support group where you may find others in a simliar position to yourself.

    Hope this helps.

    David S

  • Hi DAvid

    thanks for replying. The doctor did give me details of a support group but i havnt done anything about that yet as i didn't feel i was suffering too much as yet because my myeloma is "stable", but may do in the future.

    I go to see a rheumatolagist in a couple of weeks to see why my ESR is still high even after being on steroids for more than a year now.. as was put on these due to first being diagnosed with Polymyalgia, but still suffer the same .

    was told that the symptoms of myeloma & polymyalgia are similar so thats why i was still on them.

    so hohefully they will give me the answers. I am being weaned off the steroidsw right now to see the effects before my appointment

    So fingers crossed

    Regards

    Susie

  • Hi Sue

    Good to hear that your myeloma is stable. You may find that by attending one of the support groups you could share your experience as well as finding out how others in the local area are getting on.

    Hope this is helpful.

    David