Anyone here have MGUS and PA?

[Myoldcat]

Flipping heck, what next...?? Just awaiting a phone call from (never before spoken with) GP to discuss blood results, but I can see she'll be telling me I have MGUS. My regular GP suspected this and ordered more tests. Apparently there is an association with PA. Does anyone else here have this alongside their PA, and if so could you share your experiences? Many thanks x

[Jillymo]

Hi,

I have read all sorts whilst being on site but cant say I remember MGUS but I believe there is a link to PA. I have that many conditions I have given up counting and just try and take them in my stride. It will be interesting to hear what the Dr has to say. Keep us informed. 🤗

[Myoldcat in reply to Jillymo]

Will do Jillymo. As I understand it, it's a mildly ticking time bomb that may or may not develop into myeloma...still awaiting the call that should have been before 12 noon 🤷🏼‍♀️

[Jillymo in reply to Myoldcat]

Thats about right they are never on time and of course it puts our minds at rest talking to a Dr we havn't spoken to before !.......... Apparently many dont manifest so as said before take in your stride.

[Myoldcat]

Thank you for reassurance, I was just a bit shocked as I'm still getting to grips with the PA! Lots of crossover of symptoms too. She just called, didn't really add much to what I already knew from 2 friends who have it and of course Dr Google! My results apparently haven't changed in the last 6 months (I hadn't realised the significance of a comment on the g band last time, but this round of tests has been entered with much more detail) so she's contacting hematology to see if they need any more tests doing, otherwise it's annual monitoring. And a liver ultrasound as I'm experiencing discomfort there. So hey ho! Gonna get back to serious meditating to harness the mind body healing!

[Jillymo in reply to Myoldcat]

Bless ya,

I'm on annual monitoring for my heart, I had my angiogram at the beginning of July and still waiting the results ! !

Lets heal and meditate together. 🧘

If you can get in the lotus position your doing better than I. 💐

[Myoldcat]

Well maybe a modified version...🥨😅

[JesusMercy60]

I'm so sorry to hear this new's you were doing so great on your recovery with PA, I have never heard of this MGUS, and before I had never heard of PA either. Well we all share everything on hear with each other so I will be sending up prayers for you. I hope and pray for strength on all these new roads we are taking in life. I try to be strong but I have the weakness of our human nature and I have been given this forum with people who truly care , support and have lot's of love for each other. keep us informed as well because we are also at risk it sounds like.

[Myoldcat in reply to JesusMercy60]

Thank you for your kind prayers JesusMercy60. I'm sure I'll be fine, it was just a bit of a blow yesterday as yes, I have been improving on injections but as some of the MGUS symptoms are very similar I now wonder how much more progress I will make...

[Wwwdot]

Hi Myoldcat

First LOTS OF HUGS.

Second IF the dx is MUGS … you will be in a BETTER position with that KNOWLEDGEas you can take preventative and watching measures.

When it comes to auto immune and related issues IGNORANCE IS NOT BLISS … it’s a blessing in a boxing glove. KNOWLEDGE IS POWER!

Thinking of you my friend

🤗🤗🤗

[Myoldcat in reply to Wwwdot]

Thank you Wwwdot, I love "blessing in a boxing glove"! It does feel a bit like I've been slapped! There seems very little preventative advice except some trials with curcumin which I will study, as a possible way to slow any progress of the condition. But that binds iron so would need to up that 🙄 Should have trained as a pharmacologist! 👩🏼‍🔬

[Wwwdot in reply to Myoldcat]

Hi Myoldcat

I use high dose cucumin to treat the inflammation of my bowel and unexpectedly I have found that Brochostop thyme extract lozenges for coughs also soothe it - perhaps as similar properties to oregano? So I alternate between liposomal iron and cucurmin and suck in the the thyme lozenges which I love! But they are pricey so I stock up when on offer! There is also a bronco cough medicine which is also effective but less convenient.

We could all do with a pharmacology buddy!

🤗🤗🤗

[Myoldcat in reply to Wwwdot]

Could you please share the curcumin and iron brands and regime you use Wwwdot, or pm me? There are so many around, but you've clearly found something that works with your sensitive gut... I stopped turmeric when I was diagnosed with PA because of the iron binding, but my ferritin is good so I think I could take a chance and experiment till my next blood tests.

[Myoldcat in reply to Wwwdot]

I love thyme as an essential oil/extract, it's anti everything - bacteria, fungi, inflammation. Great that it helps!

[MrsTuft]

My Mum has MGUS. She also needs B12 injections after chemo decimated hers. You’ll likely just monitor and outlive MGUS so try not to worry. Xxx

[Myoldcat in reply to MrsTuft]

Thanks for your reassuring words MrsTuft. Outliving it is definitely a good plan!

[Judithdalston in reply to MrsTuft]

My Mum too had this as diagnosis and lived to 98 without more ‘blood’ type problems.

[Myoldcat in reply to Judithdalston]

Well that is wonderful to hear and very positive. Thanks for sharing and so glad you had your mum with you until that great age ❤ Hope I can be bothering my family and friends for that long!

[PlatypusProfit8077 in reply to MrsTuft]

My mum also has MGUS and is just on monitoring too. I hadn’t heard of a link between that and PA though…interesting

[MrsTuft in reply to PlatypusProfit8077]

I don’t think there is a link between them.

[Myoldcat in reply to MrsTuft]

I saw it referenced on a Macmillan site that popped up during a search, but that's the only place so far.

[MrsTuft in reply to Myoldcat]

Oh yes you’re right… macmillan.org.uk/cancer-inf....

[Realtiger]

So sorry you’re going through this. I can’t comment about the connection with PA but am curious about how this was picked up. Abnormal ALT and elevated IgM? The two together will have prompted electrophoresis testing which will have picked up the MGUS. I was referred to a haematologist as I have consistently high IgM (but normal liver function) so read up about the possible outcomes. No MGUS in my case but still no reason for IgM elevation beyond the fact it’s indicative of autoimmune issues. I think it’s why I qualify for Covid boosters with the 90 year olds!

As Mrs Tuft has commented, you could well outlive it - many people live with MGUS and it never progresses to anything sinister. However, it is great that they are being thorough and need to rule out primary biliary cholangitis (eminently treatable) which I’m afraid does travel in the same family of autoimmune conditions as PA, thyroid disease, and RA. Hopefully it’s nothing more than MGUS which will remain a latent marker rather than anything more concerning.

[Myoldcat]

Thanks Realtiger. I saw a comment somewhere about a slight increase in frequency associated with PA. So hey, I must officially have PA now despite no antibodies! 😂 When I asked my previous gp about why he wanted electrophoresis and a urine test for Bence Jones protein he said it was just something he sometimes did, one of his personal quirks! But clearly a good instinct in my case. My subtype is IgG kappa, and I think the electrophoresis test comment earlier this year was 'faint shadow on the gamma band". But MGUS wasn't even raised as a possibility then, or maybe I didn't hear the allusion... I do know 2 friends with MGUS (gp who phoned was surprised I'd heard of it) One has had it without symptoms and without much change in levels for 20 years, the other developed Waldenstroms after about 10 years, and has just had a successful course of chemo. So I have examples of both pathways. Hoping I follow the first one 🙏

[Myoldcat]

Thanks everyone for your kind words. It's a bit of a blow and feels like one step forward discovering PA and learning to SI with B12, now 3 steps back with something I can't really influence or treat... but I know many of you wonderfully supportive people here live with multiple autoimmune challenges, so no more moaning from me! Will take a duvet day today to feel sorry for myself, and then get on with it! 😬

[Wwwdot in reply to Myoldcat]

SENDING LOTS OF HUGS 🤗 🤗🤗🤗🤗

[Sunvalley12 in reply to Myoldcat]

“Duvet day”! Love it! You deserve every minute and we need to allow ourselves that on our journeys. Hugs 🥰