[BellaRSParticipant]

Hi!

I'm not new, but there have been a few recent discussions here about smouldering and one issue that came up was MM/SMM/MGUS in combination with rheumatoid arthritis.

I have SMM and RA – both diagnosed March 2008. I know that there are others out there with both and there is some research that have patients with both diseases. But there is nothing as far as I know on how they may or may not be related. My consultant thinks that mine are related and that my RA affects my SMM but not the other way around. I'm not sure if this makes sense. Why would it be one way only and why that way?

My paraprotein readings are very varied (between 6-15) and my consultant thinks I'm an anomaly and that the reason is the RA. Do others who have RA and MM/SMM/MGUS also have this great variation in readings?

I changed from traditional meds for RA to new biological ones and my paraprotins fell to the floor. Now they are up again.

If you are as weird as me 😉 please share!

Bella

[PilgrimParticipant]

I probably fall in to the weird category.

I am officially classified as MGUS. My paraproteins aren't high at all, and it's my sFLC's which stand out and, though well above limits and increasing, I've read about people having readings as high as 8,000.

My symptoms have never been classic, but there are so many variations to this illness that anything is possible.

I'll post my results in the forum later this week but, in spite of much research, I am no wiser.

I agree with jellytot and that might be a useful area of investigation. Interestingly my GP referred me to rheumatology but I had a bad experience. It was a very bad day for me and I felt very unwell, and the Consultant didn't perform any examination or test and just discharged me, without telling me that was what he was doing. I expect you'll have better luck but Consultants in different specialities are always reluctant to treat the same patient from my own experience.

I had a very powerful negative reaction to a flu jab last winter that has never happened before, but it doesn't prove anything.My next appointment in in late September and the readings then should establish if I'm on a set trend.

Out of interest I'm Iga lambda.

As well as the sFLC reading the kappa/lambda ratio is significant. I have had three attempted measurements but only one worked and it came out as 0.1 which is outside normal range. If you have high readings but a 'within limits' ratio it can point to another illness perhaps.

The reason given for not getting a reading was insufficient albumin excretion, which appears normal on a CBBC, but the sFLC is taken using a different method.

[BellaRSParticipant]

Hi Jane!

So you also experience variability in paraproteins. I don't get joined up appointments but my consultants are very aware of the other disease and the other consultant. My hospital has fast track for new RA cases – took 2-3 weeks I think, but I know they have this as a special thing.

Bella

[BellaRSParticipant]

Hi Pilgrim!

I'm also IgA, but not Bence Jones. Though I do take the FLC test now and then and my ratio is higher than normal but not by much. Have you had a bone marrow biopsy? I got too stressed about not knowing when I was first MGUS labelled and did the BMB which showed I was smouldering.

Bella

[PilgrimParticipant]

Yes I had a bone marrow biopsy and that didn't show anything alarming.

The CT survey they did appeared to evidence that I have led an adventurous and active life, but presumably they don't consider any of the damage they noted is down to MM, but I'll go over it again as some of the things they mention are a concern to me.

I mowed a small area of lawn at the weekend and the following day I felt as if I had been trampled by a herd of wildebeest. Thankfully I can walk normally and without a stick, though I always carry one because my balance isn't good and walking fast with faulty steering makes me dangerous to other pavement users.

I even noted that they performed a 'Congo Red' test for amyloidosis which was negative and, from my symptoms, I always thought that was most likely.

It's the strangest thing that people suffering from the same illness, or family of illnesses, can have such divergent symptoms. In that respect I'm probably quite lucky, though I don't feel it. As much as I am desperate for a definitive diagnosis I dread it too, as any treatment is likely to make me feel worse that I feel already.

[AntSteelParticipant]

Hi
Not many replies (recently) on this but Im definitely interested in RA and SMM combo.

I was diagnosed with Myeloma in 2011 – two and half years ago – thank goodness it appears to be smoldering. 10 years earlier I had bad unexplained arthritis and every few years after that I had more episodes. I took diclofenac which was great for the arthritis but is bad for myeloma so they stopped me in 2011. Since then arthritis has got much worse – especially my back but also in the original place – my feet. I havent been diagnosed as Rheumatoid Arthritis (yet) but it seems to accompany flu like symptoms so I think theres a connection. Not only does the SMM make the RA worse – because I have low immunity – but I suspect one causes other although I dont know which way round yet.
Keep me informed please on any developments
Thanks.
Anthony

[BellaRSParticipant]

Hi Anthony!

I take diclofenac up three times a day. It has no effect on my myeloma and none of my consultants have told me to stop it. I know diclofenac has a lot of side effects and should be avoided if you have certain health issues and many of those issues are frequent is patients with myeloma (eg kidneys).

I struggle with the flu despite being vaccinated each year. I seem to catch it at the end of the flu season. It is not too bad since I've had the shot, but still annoying. The only good thing about the flu is that since my immune system is busy fighting the flu my RA gets better 🙂

Bella

[JazzbaryParticipant]

[url=http://arthritis.com.sg/rheumatoid-arthritis/]Rheumatoid arthritis[/url] is an autoimmune condition where the bodys’ own immune system attacks itself. Our body immune system will usually produces anti-bodies for attacking foreign viruses and bacteria, and thus protects our body against any infection.

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