[BellaRSParticipant]

Hi Heather!

I’ve been smouldering for 8 years. My pp is below 30 but my biopsy showed 15%. When my pp was at its highest (15) I was ill a lot, but the pp went down and now I don’t have any symptoms. Just the normal smoulder worries about progressing.

My consultant doesn’t like me being called a smoulderer since I’ve been stable so he keeps calling me MGUS which is really confusing. Does your consultant call you Asymp MM/smouldering or MGUS?

Bella

[BellaRSParticipant]

I was diagnosed with both at the same time. The two do affect each other somewhat. When my RA is bad, my protein goes up as well. But I don’t think one can cause/lead to the other. Rather some people have more than one auto-immune disase as Jane says. Do note that RA often starts very slowly and many don’t know they’ve got it till much later; alternatively, you can, like me, swell up in your joints within a matter of hours.

Bella

[BellaRSParticipant]

So sad to hear this! Have very fond memories of reading his posts.

Bella

[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

[BellaRSParticipant]

My husband is the carer and it is very hard on him. I'm "only" smouldering but also have severe rheumatoid arthritis. Got diagnosed with both when our sons were only 3 months old – they are 6years now. Good news is that it is working sufficiently well, but the bad news is that it drains the carer. The things I've needed the most from my husband is for him to ensure me that I don't have to feel guilty for "making him work so much more" and for not doing my share. Knowing that is is ok to stay in bed when I have to and knowing that he is ok to do my bits helps so much. Last year I more or less isolated myself from everyone – incl husband – since I could not take people talking to me about serious stuff (=me being ill) or unimportant stuff (=normal chit chat). I should probably say that I didn't isolate myself from my kids. My husband let me do this and after a year of having my head to myself (and lots of breakfasts in bed thanks to husband!), I pulled myself out of it and returned to the living world. I got sufficient distance to others and my own illnesses to move forward and get on with my life. I feel stronger and stronger, and although my husband wasn't sure at first whether I was really back, I think he now sees that I am much more "present" and much more in control of things. MM has had a profound effect on our family (minus the kids who are oblivious). I have no idea how my husband managed to find the strength to let me do what I had to do. I suppose what I am trying to say is that even when it all seems impossible, there is actually quite a bit of light ahead to steer towards.

Bella xxx

[BellaRSParticipant]

Bloody hell! Sorry about bad words but it's the best I can say. I really feel for you two and your family. Please visit us a lot and vent all your frustration here as much as you like. Sending you lots of hugs!!!

Bella

Ps my twins are 5 now

[BellaRSParticipant]

Dear Rachel,

I am so sorry to hear this, and my heart goes out to you and the family. I remember many of Outdoors Paul's post on here and on the under-50s pages – we won't forget him.

Bella x

[BellaRSParticipant]

Hi Emma!

28 is very young to get this. I was 37 when diagnosed, but I'm luckily still smouldering only. I joined the under 50s group so that I could get additional advice and support from others who have young kids. If you want to join us, please email Scotty s.hawkes@added-value.com We have a few other bloggers there.

Bella

[BellaRSParticipant]

SMM = smouldering multiple myeloma

Basically it is all in stages strting with MGUS, then SMM and finally MM; however only some get diagnosed early at MGUS or SMM stage.

Asymptomatic multiple myeloma is a bad term as it could mean SMM (lower levels compared to MM and no symptoms), or it could mean that the patient has levels normally seen with full-blown MM but for some strange reason has no symptoms/effects.

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

[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!

If you email Scotty on s.hawkes@added-value.com she will send you an invite to the under-50s group.

Bella

[BellaRSParticipant]

So sad to hear this! She made me such a lovely hat, and put a smile on my face 🙂

Bella

[BellaRSParticipant]

I love the fake badge idea – might copy that myself. I don't have a blue badge as I don't need one yet but I do so hate people taking up disabled spaces or the toddler spaces. My favourites are the idiots that park in those spaces cause they only have a small shop to do… ARGH! Maybe I should make a "you forgot your kids" sign and stick on their screens 😉

Bella

[BellaRSParticipant]

I'm so sorry to hear about your mum. As the other have already said, you probably won't know for a while how this is going to affect her life and yours. I can't offer much advice on treatments and stuff cause I'm lucky enough to asymptomatic still. But I do have a mum (!) and I am the only one for her. She used to live very far away and I used to worry about getting an ulcer from all the stress of not being there for her cause she did have a way of getting herself in a pickle (not healthwise, but old house and not being able to look after it). I started pushing for her to move – it was not nice to have to say that she'd be better off near me rather than near friends. But it was the right thing to do. Shortly after she moved here, she started having health problems and had to have spine and hip surgery. Had she not lived near, I'm not sure she would have coped. I know my mum misses her old place and friends, but she also knows she is better off here and she gets to see me all the time and the kids. Plus she goes back to visit regularly. Her moving was the best for all of us.

Bella xxx

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