I'm 61, 2 years ago I was diagnosed with GCA and PMR, which was wrongly diagnosed as fibromyalgia 5 years ago.I'm now down to 4mg of prednisilone and weekly injections of methotrexate.
Today, after several repeated blood tests as my plasma viscosity was raised more than usual, I received a letter via My Care telling me I also have MGUS.
In the letter was a link to information relating to MGUS, and advice about having regular bloods taken at my GP surgery, which due to the medication I'm on, I already do.
So, I've been left scouring the Internet to find out about this new condition, which is now with me forever, and apparently is a pre cancer to multiple myloma.
Obviously I'm upset, and I feel let down not to have been told face to face, even though the rheumatology nurse called me yesterday with regard to the recent bloods.
Has anyone else had a similar diagnosis, after being diagnosed with GCA?
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Lindilooo
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Previously, I was diagnosed with pmr in December 2014, and the Multiple Myeloma diagnosis came in the summer of 2021. I say Multiple Myeloma because a bone marrow sample showed I had cancerous cells in the plasma., and that is what the Consultant said I had. I was on steroids until October 2022.
Initially, I was to be put on medication, but subsequent blood tests showed no deterioration, and I have just today been told that the MGUS, as they now call it, is stable, although I will need lifelong monitoring.
I have never believed that the Myeloma was, in any way, connected to being on steroids. I had no outward, obvious symptoms, and condition was only diagnosed as a result of blood tests during a “premed” for a total hip replacement.
It was all a bit alarming at the time, but, to be honest, I hardly seem to notice it, and I have had regular six monthly blood tests to check that I’m ok.
This reminded me - one of the differential diagnoses for PMR is actually multiple myeloma so it is almost always looked for but they may not haave noticed MGUS back then.
And I just noticed, do you feel better if I say it isn't a pre-cancer - but a precursor? So easy to mistake the difference.
Yes, pre cursor sounds a bit more positive than pre cancer. I've read so much today, my brain is exploding, so much conflicting information on the Web.
I think I was just shocked that I was told in a letter, but at least I know now what's causing my plasma viscosity to be constantly raised these last couple of months. I knew something wasn't right, as other than that I was doing so well.
Yes, the Consultant told me at time of diagnosis, that Multiple Myeloma is, in some ways, similar to pmr..
He was certainly a bit alarmist at the time, but then my wife learned a couple of days later that the husband of one her swimming companions had Multiple Myeloma for twenty years, and was doing ok! That made me feel a lot better.
There are a number of blood tests they do, but the important one for me is the para protein level.
I'm glad to hear you're doing well, it's great to hear positive stories. Para protein, thank you, I couldn't find what I need to ask about. My high plasma viscosity readings are presumably related to all of this?
Thank you, both extremely useful. I wonder if I should ask my GP to refer me to haematology, as I fear my GP will not know which tests to request, as I've even found this with regard to the current blood work for methotrexate, I usually have to tell the nurse, as rheumatology never provide labels.
Not sure - it is easy enough to google - and the patient.info site is aimed at UK medics. It was originally started by 2 doctors in the NE to provide reliable info for such questions.
Just turned out a leaflet entitled Your patient diary issued by Myeloma UK. It is for patients with MGUS, and explains what it is, and why and how you will be monitored.
It is available from Myeloma UK, 22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4 HG. Phone 0131 557 3332. Email myelomauk@myeloma.org.uk.
Can’t help on plasma viscosity, as it was never mentioned to me. The main tests related to paraprotein, haemoglobin, and lamba light chain.
I have to say that I didn’t know the relevance of the results , but I did ask what levels they should be at, and what levels were bad news.
They do, of course, carry out other tests, and, for me, they included white cell count, neutrofils, and platelets. The results didn’t mean much to me, so you have to keep asking!
At the end of the day, they said my condition was stable, and, to be honest, that was good enough for me.
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