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.
I was diagnosed with MGUS about 3 months ago. It was diagnosed as a result of a blood test. It was the presence of a paraprotein that indicated an issue. The volume of it determines if it is significant. At a low level it’s classified as Unknown Significance. I found out about the para protein when I asked for a copy of my blood test to give to the radiography dept before a ct scan on my 3 year post cancer scan. No one mentioned it to me until I was referred to a rheumatologist who referred me to a haematologist who is now monitoring me with 6 monthly blood tests. As Charlie1boy said the MGUS does not seem to have an effect on day to day life.
Thank you, I hope you're doing well, I haven't even been told anything about it yet, it was a very basic letter, so I'm going to ask for more information.
I first found out when I read the very technical blood test results. It mentioned a new paraprotein and blood cancer and regular blood tests. It didn’t mention mgus but did mention lambda gamma. So I referred to dr google and found out about paraproteins. One of the tests identified Sjogren syndrome so I was referred to a rheumatologist, first time I’d seen one. She used the term mgus and referred me to a haematologist. I was given a leaflet about mgus. I found that google searching mgus gave me a link to lots of information . A good and reassuring description comes from blood cancer uk, you can order leaflet from them, I think it is the one I was given by the haematologist. I expect that your gp will invite you for regular blood tests. If it is possible I would ask for a telephone appt with your gp to discuss it.
hi Lindilooo. I too have been diagnosed with carrying the MGUS antibody.
I was diagnosed with PMR in March 2020 (and diagnosed over the phone due to the pandemic).
Not too long after I got a phone call from one of the doctors at the surgery just saying, very abruptly, that they’d got the results of my latest blood test and it showed that “you haven’t got Myeloma but one in x amount of cases can lead to Myeloma.”. She’d spoken to the haematologist who said I just need yearly blood tests to keep an eye on things.
I’m also a carrier for haemochromotosis - but tbh I don’t worry about any of all that, as long as my blood tests are all fine (which they are) then I’m happy.
[After getting the abrupt call from that particular doctor I contacted the surgery to complain about her attitude and said I didn’t want to deal with her again!]
And tbh I’ve never, ever, had a F2F with any doctor about my PMR or the MGUS. I’ve long accepted that organising my regular blood tests are down to me.
You’re not alone, Lindilooo. Just reach out to me any time. x
Dec 2021 diagnosed with PMR. Regular blood tests followed which resulted in a text from GP with a link to Multiple Myeloma, which I duly read. For several weeks I believed I wasn't going to survive 5 years - it was an horrendous time. I had bone marrow biopsy, MRI, more bloods..and in May 2022 I was given the diagnosis of smouldering multiple myeloma..or asymptomatic MM. The measure of plasma cells in the bone marrow decides whether it's MGUS, asymptomatic MM, or MM. Mine was one more than the cut off mark for MGUS so the official diagnosis is AMM. Two years on I'm less scared - the paraproteins remain stable though I do stress a bit prior to each quarterly blood test result. Please only read the Myeloma UK information as the others will scare you senseless. From memory I think MGUS has a 1% chance each year of progressing - I'd happily take those odds. My belief is that there is an overlap between PMR and MM and I don't know how much the steroids are keeping the paraproteins stable. But one thing I do know for sure...the PMR kicks my butt way more than the AMM!
Good to hear you're ok, and 'dealing' with the emotional side.I agree, there is a definite link between PMR and MGUS, or perhaps there's no such thing as PMR?
I'm down to 4mg of prednisilone now, and looking at my previous bloods, the changes started when I was reduced to 5mg of prednisilone, odd.
I'm also on methotrexate so I don't know if that's linked in too.
When I got the letter yesterday I freaked out I must admit, I'm dealing with GCA which nearly blinded me. PMR which is miserable, immobility due to knee problems and multiple skin cancers. What more, I thought.
I have so many questions for the Dr's, I'm building up to it.
In the meantime I will try to look after myself, and keep calm, as apparently there's nothing else I can do. I hope you're journey continues with positivity, thank you for replying.
Hi Lindiloo! Just read your post and biog. I know I have some unusual antibodies in my rhesus negative blood as I needed a couple of transfusions after open heart surgery 2 years ago and blood had to be specially ordered. I kept meaning to follow this up, and think will do so now. Like you, I was given fibromyalgia diagnosis 10 years prior to my GCAPMR one. You are so right: look after yourself and keep calm - exactly what I'm trying to do. Best wishes!
Hello I was diagnosed with MGUS during all the blood tests I had at diagnosis of PMR. The GP told me face to face and I was then referred to a haematologist who explained that I had a very low level of para protein but that I would need a yearly blood test to monitor. This was six years ago and I think NHS under more pressure now. I was also very worried but reassured by the Drs explanation of things, the blood test have remained stable. It would have been good practice to have had this worrying test explained to you face to face by a Dr or specialist nurse. Read as much as you can or try asking your GP for a haematology appointment. Best wishes.
Thank you, I've just done an e consult, asking my GP lots of questions, and asking whether I will be referred to haematology, I hope I am, but I read not all of us are.I've not been told what my readings are, or what type of MGUS I have, and I find that difficult as I like to remain informed.
Really good news you are remaining stable after 6 years, that's really positive, I hope I do too.
By extraordinary coincidence I have just learned this afternoon that I too have evidence of MGUS, although some blood results will not be available till August 14th. In panic I managed to speak to my lovely GP who was very reassuring and said that with a paraprotein level at TWO I should not be alarmed. But of course I am.
I had a whole bunch of blood tests done on Monday and had no idea what was being looked for other than a cause for anaemia which recently came to light. The adage “A little bit of knowledge is a dangerous thing” and the results appearing on “Patients know best” have scared me. I had never heard of MGUS until reading this post today and the indicators are that I am in the same boat as you Lindiloo.
Nothing to worry about, says the doctor, may not even need to be reviewed by a haematologist. But it’s just another thing to deal with in my eighth year of PMR and having being diagnosed with a brain tumour earlier this year.
I planned on shaking off the PMR this year (concerted effort) and was dealing with slow tapering through the lower doses while feeling like shit, now it looks like it’s even more vital to get off the steroids. So is there a connection between PMRGCA syndrome and MGUS which is under researched ?
So sorry to hear you are also going through this.It's easy for the Dr's to sat, don't worry, it's not them it's happening to.
At least you have been contacted by someone medical, I haven't heard from anyone yet, even though I have reached put today.
It makes me wonder if GCA or PMR is linked to MGUS, or perhaps I've had MGUS for years? Who knows.
I've been having regular blood tests because I'm on methotrexate and steroids, but they only picked up high plasma viscosity over the past 3 tests. I queried it and was told, it's normal for those of us with autoimmune conditions.
I wasn't happy with that so requested rheumatology look into it, and it was their extra blood tests that picked up MGUS. If I'd have just left it, nobody would have found this.
So I do feel quite often that I'm having to look after myself, increasingly so.
I'm being selfish when I say, I just get very anxious at the thought of MGUS progressing to MM, that scares me, I don't want to die. I sound like a misery, I think I'm still in shock, especially as I've had no medical support or advice. I'm expecting a call tomorrow as I've asked a few questions, and they usually respond to e consults within 48 hours.
I was in a real state of anxiety and tears when I phoned to ask for a call from my doctor who does a long afternoon session on Wednesdays. The receptionist offered me a call on Friday and I begged her to get a message to my GP. He phoned me back mid afternoon, bless him.
I was supposed to be doing a speed awareness course by Zoom tomorrow after being caught speeding, but I rang and cancelled it cos my head is all over the place. Adrenal recovery and anaemia make me fatigued at the best of times and my brain struggles to keep up so I knew I wouldn’t manage the course.
I just find this whole illness business to be so bothersome, surely it’s my turn to have good news. At least there is always someone else here on this forum to empathise and support us, and give great advice. Take care of yourself xx Chrissie
so sorry to hear that. Misdiagnosis or Malpractice in US kills more people in a week than gun violence in a year. I can empathize with the crap you are going through.
am 60yrs old and was first diagnosed as having PMR by two different rheumies
they treated me with prednisone for three years so I could continue working. Finally they just quit giving me prednisone cold turkey so I quit working but zero disability
last Rheumy said I have RA but it seems to effect not only every major joint but my bowels and bladder. Don’t have healthcare or income anymore so no longer have access to prescriptions. No more Diabetes or blood pressure meds.
I looked up multiple myeloma …..yuck
Apparently mistakes happen everywhere not just where you live. I have no comforting words except you are not the only one.
I was also diagnosed with MGUS in 2015 when I was first diagnosed with PMR. I consulted a, highly respected hematologist oncologist: I don't even remember what he said at the time. I don't remember ever being told to come back. Then 3 yeas after that appointment, I went on my own for retesting. nothing about coming back. Unless I wasn't listening? So this week I am going back to the doctor. It's been 5 years...
Thanks for replying. Its reassuring that your original diagnosis was 9 years ago, and you're still well. I'm still having problems with Dr's giving me the information about what type of MGUS I have, so I've booked a face to face appointment for Wednesday, with a nice GP at our surgery.
I've calmed down now, I was crying every day at first, it was a shock.
No! I was never advised at any time; I totally forgot about MGUS during covid and my tapering saga. Only after I read on this forum, about members experiences, did I think: "hmmm, I better check back with the hematologist oncologist now. I called the practice, they looked up my record and said they saw no recommendation for follow up. They were going to discuss my case with the doctor and then recommend an appointment. Who knows what has changed in the interim; after 5 years anything can happen. I feel OK outside of tapering fatigue.
It's great that you feel OK, I'm tapering off Prednisilone at the moment, I'm down to 3.5mg, it's the lowest I've managed without a flare, probably the methotrexate working I imagine.It's a hard journey isn't it, I try not to feel sorry for myself, who likes a moaner!
At least you can see a haematologist or oncologist, I'm stuck with a GP here in the UK, I have an appointment tomorrow and I'm pushing for a haematology appointment, as I don't think GPs or rheumatology understand MGUS to be honest.
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