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…[Read more]

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;…[Read more]

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

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

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

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…[Read more]

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

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

Hi!

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

Bella

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

Bella

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…[Read more]

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…[Read more]

Thanks Geoff! (and Tom for positive vibes as always…)

I can't find anything in Bangor but Liverpool looks good. However, husband is not keen to move so will have think bit more before I decide whether to apply.

Bella

hi and welcome!

I'm also asymptomatic/smouldering (though at first they labelled me MGUS). I did consider curcumin, but the thought of that many pills extra was a bit much – I've got RA too and there are plenty of pills a day for that. Though at the moment my pp has dropped significantly and I think it is because of Humira (anti-TNF drug…[Read more]

…but a bush full of lady birds

Bella xxx

Hi!

Like Debs I'm a smoldering kind a girl… I've looked at curcumin but am not sure whether the potential "down" effect it has been reported to have on paraproteins is a real one or not. I've got rheumatoid arthritis (just to add to my pleasures!) and after recently starting Humira (a biological anti-TNF drug) my paraproteins sank to the…[Read more]

I like it! (Though when I just reply to a topic, it asks me for a subject which is confusing since the subject is the same…)

Bella