Smouldering Myeloma diagnosis

[GRB8]

Hi everyone,

Just updated my bio - in short, having been diagnosed with PMR in early March, a MGUS “flag” in my early blood test results has led, unexpectedly and shockingly, to a recent diagnosis of Smouldering Myeloma. Fortunately, as “smouldering” indicates, the cancer is not yet active and I have no symptoms. At this stage, it is not thought that my PMR was misdiagnosed rather that it is operating alongside.

As Myeloma UK highlight, the uncertainty and shock of the diagnosis is very challenging - with no symptoms (apart from the usual PMR ones, though I’ve stalled any further tapering, from 11.25/12.5mg, for the moment) it is very difficult to accept that I have such a life-changing condition.

It seems likely to me that my AFib, PMR and now Myeloma, are somehow interconnected - if anyone on this amazing forum has experienced/is experiencing a similar journey or course of events then please feel free to reach out and share.

Thank you.

Gary

[PMRpro Ambassador]

There are several people on the forum with MGUS and a few where it has progressed to smouldering myeloma. I think there is also at least one with myeloma.

I've just tried the search function still as useless as it every was in this case even if it worked for someone else for head sweats!!!! So unless someone is better at it than me, you will have to wait for people to respond.

AFib and PMR are connected - there is an increased risk of developing it if you have PMR and mine was almost certainly caused by the autoimmune part of PMR damaging the electrical cells.

[PMRpro Ambassador in reply to PMRpro]

healthunlocked.com/search/p...

actually has several posts that are relevant from members of the PMRGCAuk community over a period of years, Some of the more recent ones are from still active members and the older ones may have interesting comments and replies.

[GRB8 in reply to PMRpro]

Many thanks, that’s helpful as always. Looks like progression to MM is still pretty rare but not nearly as it was a few years ago. Never has the phrase “live for the day” seemed so apt. Thanks again.

[PMRpro Ambassador in reply to GRB8]

Something I and my husband learned when he had his first brush with the big C in our early 40s,. His mother literally turned her nose to the wall and died in 10 days, unwilling to wait and see what happened. He, on the other hand, plugged on and lived pretty well for another 26 years, had another brush with cancer and survived that, He died of the longterm side effects of the treatment of the original episode.

[GRB8 in reply to PMRpro]

So sorry for your loss, it sounds as though your husband had a good, positive mindset. Thank you for sharing - it’s encouraging to hear about real experience of facing up to such daunting life challenges. All the very best and thanks again for all you do on this forum.

[PMRpro Ambassador in reply to GRB8]

Thank you - 3 years ago nearly. How time flies! You don't think of it being daunting at the time, you just get on with it. Not sure if he was particularly positive - he turned in on himself, wouldn't talk about anything related to any of it. Which probably didn't help in the eventual outcome as he wouldn't admit anything and ask for help.

[GRB8 in reply to PMRpro]

Apologies, I misinterpreted your use of the phrase “plugged on”. It must have been a tough time for you both.

[PMRpro Ambassador in reply to GRB8]

It was certainly INTERESTING!!!!! Wouldn't want to do it again.

[Koalajane]

I don’t know anything really about myeloma but know I had blood and urine tests to check for it before a definite diagnosis of PMR was given

[GRB8 in reply to Koalajane]

It’s good that you had them done, I’m not sure the tests are always as thorough as they might be. Take care. Gary

[PMRpro Ambassador in reply to GRB8]

The screening tests should include a full blood count - which will show any changes in proportions of white cells. If they are significant they do a differential count - a smear of blood on a glass slide and count how many of each ...

It is part of the differential diagnosis of PMR - can cause similar symptoms.

[Charlie1boy]

Hi,

I will post a reply tomorrow. I also have been diagnosed with Multiple Myeloma, which is described as smouldering.

Not totally with it tonight, after a long drive south in pretty poor conditions.

[GRB8 in reply to Charlie1boy]

Many thanks, safe journey.

[Charlie1boy]

Hi,

My situation is that I was diagnosed with pmr at the beginning of 2015, and subsequently with Multiple Myeloma in June 2022, whilst I was still on prednisolone.

The MM came as a complete shock and only came to light following pre op blood tests before a hip procedure, as the paraprotein levels were considered too high. A subsequent bone marrow check showed cancerous cells.

I had no symptoms of MM, and at diagnosis, it was all a bit alarming. However, further blood tests showed no increase in paraprotein, and six months later the MM was described as smouldering. It has remained so ever since. I have to say that the MM has caused me no issues at all (as far as I am aware!}! I did not take any medication for it.

The haematologist did say that symptoms of MM can be similar, in some respects, to pmr.

Hopefully, you will be ok.

Good luck.

[GRB8 in reply to Charlie1boy]

Many thanks, that’s helpful. My smouldering myeloma diagnosis followed on from an initial MGUS identified from the early PMR related blood tests. Was told that very few MGUS cases progress to myeloma (smouldering or active) so was shocked when bone marrow biopsy revealed 15% cancerous plasma cells, though thankfully full body MRI showed no damage, hence smouldering and no need for any treatment (yet). I understand that the longer it remains smouldering the odds of it becoming active do reduce slightly so that’s the hope. Let’s hope we’re both still smouldering for many, many years! All the best. Gary.

[CygnusX1 in reply to GRB8]

My plasma cells were 11%. Paraproteins have remained between 6 & 8. The lovely nurses have now realised that because I'm numbers driven the first thing they tell me is my pp number before anything else, then I can concentrate on what else they say 😊

[Charlie1boy in reply to GRB8]

Hi,

Yes, you and I seem to be in a very similar situation. Last year, they decided to call my MM as MGUS, but then changed their minds to revert to smouldering Myeloma. The difference is that I get blood tested ever three months, instead of six months.

I think that all of us with this Myeloma condition get a bit anxious at blood testing time. My paraprotein was at 25.9 at its highest point, but is now in the lower 20s.

After reading your post, it makes me wonder how many more people have Multiple Myeloma without being aware of it. Mine was only discovered by chance, as indeed yours seemed to be.

Hopefully, it just continues to smoulder and no more.

[CygnusX1]

Hi, I'm a fellow PMR/smouldering Myeloma diagnosee (?)My two symptoms dovetailed each other..diagnosed PMR Dec 2021, SM May 2022.

The SM has remained stable and gives me no trouble at all. The only issue I have is the mind games that come in that waiting time between blood test and phone call from the nurse telling me the results.

The PMR kicks my butt far more than the SM. I retired in 2020 aged 55, couldn't do much due to COVID. And now my QOL is limited due to PMR so still not doing much..to my partner's frustration. I'm off to Bermuda tomorrow with my oldest friend to celebrate our 60ths. Should be excited but I'm apprehensive - the flight, the heat, the humidity, the jet lag. When those "what am I doing" thoughts intrude I'm trying to breathe them out.

Got a rheumatology appointment this morning - my old rheumy has left and this is with his replacement. The old one was fairly useless..was convinced I didn't have PMR and insisted I come off steroids. This set me back almost a year but I'm back on track for now. Apprehension ahead of meeting the new rheumy but hopeful for someone better.

Right, must get up and start the day!

[GRB8 in reply to CygnusX1]

Thank you so much for replying. The time lags between our two diagnoses were very similar.

I can already get the anxiety issue when waiting for results. It’s early days for me but I’m trying hard to develop a better sense of “living for the day” - I’m a planner/organiser so my brain will need a bit of re-wiring!

Your trip to the Caribbean sounds great though I fully understand the apprehension. Others on this site much better placed to advise often mention temporarily increasing the pred when travelling, changing routine etc. As it happens, I’m abroad (Sardinia) at the moment and I’ve marginally upped my dose and a bit of Sun on my back has no doubt helped too.

Hope you have a great big birthday trip!

All the best

Gary

[CygnusX1 in reply to GRB8]

Haha I am also a planner and a bit of a control freak. Love to make a list! I've learned to forget about the SM outside of the 2 weeks for test and results. It becomes easier as you realise that it really is not affecting your day to day life. One of the weirdest things for me is knowing you have cancer but nothing is being done - no chemo, no surgery, no panic...just carry on. So carry on is what I do 😊. Happy for you to PM me if ever you want to bounce anything around.

[PMRpro Ambassador in reply to CygnusX1]

Do tell us how you get on with the new rheumy!

[CygnusX1 in reply to PMRpro]

Oh my goodness! What an absolute dream the new rheumy is. I wonder if the old one has had complaints because she started out by apologising and telling me I was free to say whatever I wanted to. She went back to the beginning, asked pertinent questions, told me I'm doing the right thing by adding 5mg to my dose to get me through the holiday. Then said she'd prefer if I stepped down to 10mg then 7mg rather than drop all the way back to 7mg in one go. Then said..wait for this..but I'm happy for you to do which you prefer because you know your body better, and please call if you have any problems at all. She's making a follow up appt for after I've seen the Endo team and had the next results re smouldering Myeloma. I left completely blown away..what a joy!

[PMRpro Ambassador in reply to CygnusX1]

Hallelujah!!! Who is this paragon and what hospital? One for the Goodies List ...

[CygnusX1 in reply to PMRpro]

I didn't get her name as it was a text appt just giving the time not name but she's at Nottingham Queens Medical Centre. I'm still in a happy glow..or it might be the extra 5mg! 🤣

[PMRpro Ambassador in reply to CygnusX1]

Is she a consultant? WIll you get a GP letter? Nottingham had been something of a desert for decent rheumies so this is great. Ethnicity?

[GRB8 in reply to CygnusX1]

Thanks again, will do. I agree, the situation seems surreal and hard to get your head round. Take care. Gary

[tangocharlie]

Sorry to hear this, must be a big shock. I'd never heard of smouldering myeloma so thanks for raising awareness of it. interesting that others in the same boat have also come forward, there seems to be at least some correlation with PMR then. I just did a very quick google to broaden my gneral knowledge and I see steroids are the treatment for it initially according to NHS info so I can see how it overlaps with PMR diagnosis etc

[Charlie1boy in reply to tangocharlie]

I was destined to be given steroids,methotrexate,and thalidomide for the myeloma, but, thankfully, I didn’t have to start when they changed the diagnosis to smouldering. I certainly didn’t fancy that combination.

[PMRpro Ambassador in reply to Charlie1boy]

Partly our generation too I suppose - though used properly thalidomide is very useful. No change of the main problem on this forum!!!

[tangocharlie in reply to Charlie1boy]

So are you on Pred to stop it erupting?

[Charlie1boy in reply to tangocharlie]

No. I was on a very small dose of pred at the time of diagnosis, but have been off it now for two years. No medication at all for myeloma.

[GRB8 in reply to tangocharlie]

Thank you. I also understand that steroids (prednisolone) are potentially part of the cocktail of drugs that can be used for treatment. I’m also curious to find out from my haematologist whether pred could suppress myeloma symptoms or affect any relevant blood test results - I’m sure I’ve got lots to learn and understand.

[tangocharlie in reply to GRB8]

That's one of my thoughts after reading your post. Hope you get answers soon

[CygnusX1 in reply to GRB8]

I think the same. But each time I voice it to the myeloma nurses they tell me I'm stable and not to worry about it. So now I don't. (We're back to that being in control thing again 😁)

[PMRpro Ambassador in reply to CygnusX1]

Does it matter if the pred is enough to control any current issues? If anything wobbles as you taper the PMR dose they will pick it up and adjust the medication. It is mostly about trust, not just control.