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Have Any Of You With Wild Type Attr Been Told By Your Doctor Not To Do Weight Training?
I know exercise is generally a good thing but wondering about mild weight training due to predisposition to bicep tendon tears.
The opposite weight training twice a week but supervised told v important to keep the big muscles going Tony 86 England
What Blood Pressure Medications Are Available For AATR-CM Wild Type?
I'm in the 3rd phase of AATR-CMWT and my blood pressure has finally decided to head North. I have been told since day one that blood pressure management through medications was not conducive for AATR-CMWT with Afib because of the fibrous component of the rogue protein. Does anyone know of a medication that manages high blood pressure that they might recommend?
Thanks and Happy Thanksgiving-
Randy
Early 2024 I hope to explore a new relationship with what will be my 5th cardiologist. I intend to make the best of any opportunity that open its door, but honestly, my hope and trust is in other… read more
What Aspects Of Amyloidosis Are You Grateful For And Worried About Lately?
Hi Donna, I had terrible Carpal tunnel in both hands. Unbelievable pain. I underwent surgery for it and the relief after a few days was very noticeable. Today a year after this corrective surgery, my… read more
On Monthly Maintenance For AL Amy And I Am Still Feeling Fatigue And Need Daily Naps. Is This Normal?
Diagnosed in Nov 2022. I completed 1st 6 month chemo infusion shot treatment for AL in June 2023 and now on monthly maintenance with Daratumum After naps I have improved energy that lasts about 4-6 hours. Thanks everyone for any thoughts.
Good to hear Brian. I think the key is not to try to over do it. I am going to try 4 hours of work on Monday, Wednesday and Friday. That gives me time off in between. For sure jury duty will be a… read more
Is It Advisable To Under Go Bone Marrow Transplant For A AL Amylodoisis Patient Who Has Undergone Liver Transplant ?
That question is above my pay grade. That’s something to discuss with the doctor. He’ll let you know the risks vs benefits
Info On Pfizer's Patient Support
Does anyone that is on Vyndamax have the support of Pfizer's patient help plan for help in handling the costs of the medicine? I was approved by Medicare and Tricare but the co-pay is still outrageous and unattainable ($2860 for 30pill/30days.)
Thank you, Joel. I was approved by Pfizer's Patient Support Program and am now taking the Vyndamax.
Dear Amyloidosis Team. I Live In Berlin, GERMANY. Do You Have An Address Of A Medical Centre Or A Specialist, I Can Contact?
I live in Berlin, GERMANY. Do you have an address of a medical centre, specialist, or help group I can contact?
Hopkins in Baltimore also has an exceptional group of amyloid dr’s. They are now starting an amyloid only dept in the hospital. Now we will not all have to fight over the same dr as there will be… read more
Spell Check
Given that this a an Amyloidosis site it would be helpful if the software the software knew it was a valid word.
My phone changes I type & it is usually wrong!🤣🤣
I Was Diagnosed With Wild Type Amyloidosis This Past February. I Have Been On Vyndamax Since. Is Anyone Else On Vyndamax Loosing Weight?
Fabulous I’m not a fly fisherman I guess I was too lazy to learn. I mostly drift with a jig or troll with spinners with worms. When the water gets too warm I switch to bass fishing with minnows… read more
Has Anyone Had A Problem With Brittle Nails That Break After Having Treatment?
Mary, yes, I have experienced the nails going brittle during chemo which ended 5 months ago. Went to a dermatologist who recommended daily Slow Fe iron supplement. It is over the counter. Has helped… read more
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