Does anyone have any info on MGUS treatment or risk of progression?

Dear @mguspixi25, thank you so much for this. The fact that you have spent your own time to do this research on my behalf is incredibly kind. I think that there could well be something up with my immune system and I will have a look at the links you've posted. I've never seen an immunologist but it could be a good avenue to go down. I have worked in schools for the past 13 years or so and have been exposed to countless colds, flu, bugs etc plus of course covid which I've had three times fairly mildly. I have found over the last couple of years my immune system seems to be functioning better than it ever has. I've put this down to daily cold exposure (ice baths) which seems to have had a really positive impact. It's not for everyone but it seems to strengthen me from within and reduce inflammation. I'll do some research on the immune system and mgus and see what I come up with. Thank you again and have a great day.

No worries at all @nick86, it was no trouble at all 🙂
I hope things go well with the immunologist, and they dig a little deeper for you.
It’s very interesting regarding daily ice baths, as cryotherapy is used in other immune disorders to control symptoms and address immune function. I’m very glad it’s helping you.
Before I started losing feeling in my lower arms and legs, I was an avid motorcyclist, and would ride rain, hail, snow or shine, and I did notice a marked improvement in immune function during winter when body temp would drop due to very low ambient temp combined with wind chill at speed (ice would form on the bike and on my leathers at motorway speeds, riding at night). I used to have cold water showers to imitate the same response, however I had to stop because the change in body temp was affecting brain function (I have chronic brain inflammation on MRI and significant temperature changes cause me to sometimes faint if they’re too hot or cold).
I hope cryotherapy continues to work well for you into the future 🌺
And best of luck with the research.
I hope you get to enjoy the week ahead!

I'm so sorry to hear of your troubles. It must be really difficult to not be able to do some of the things you used to enjoy. The cold baths have been so helpful. I'm very grateful that I started, no matter how uncomfortable they are at times. I will continue my research and raise this with the haemotologist that I'll be seeing in December. Finger's crossed that everything stays stable until then. Best wishes and have a great week.

Thank you.
Yes, I think if cryotherapy is working, it’s worth it to continue. I was wondering what your haematologists’ opinion is..I’ve had conflicting preferences from various medics but I do notice the difference between being intermittently cold, and not.
All the best with your upcoming appointment in December - I hope it goes well for you.
I’ll be finding out the formal results from the latest BMB done last week, at the end of the month.
All the best to you too 🙂

Polycythemia SECONDARY,NOT VERA

Welcome to Connect, @catalpa. If you don’t mind sharing a little more of your story, were you recently diagnosed with secondary polycythemia? Has your doctor found an underlying cause for your elevated hemoglobin and hematocrit, such as sleep apnea? Do you receive occasional phlebotomies to keep the blood levels more normal?

Greetings!
Diagnosed with MGUS and secondary polycythemis a year ago.
Sleep apnea checked. Negative
Yes, phlebotomies to keep the red blood cell level down, every 3-6 months.
Problem is that I have no thyroid, and to be effective thyroid supplement (currently Tirosint 100 mcg) needs good iron and ferritin levels...
Repeatedly told by hematologist NO FERRITIN SUPPLEMENTS.
I am sooo tired and shakey all the time.
Sigh!!!
Thanks for caring, Lori.

You’re in a real Catch 22 situation with your requiring phlebotomies and also needing ferritin for your thyroid medication to work.
I’m so sorry you’re in such a tough spot like that! I sure hope you can find a happy medium at some point. Between phlebotomies, as your red blood count rises again, do you feel any improvement in your energy levels? How high do your hemoglobin and hematocrit rise before you need require another phlebotomy?

Hi, Lori

Thanks for your comments…

I don’t reallyfeel any difference before/after phlebotomies.

HGB was 15.8
HMT was 47.9
before last phlebotomy (6/25)

I’m thinking that hematologist is overly cautious about RBCs!

My real concern is the anxiety, hair loss and tremors in my hands.

Be Blessed
Annita

My