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Has Anyone With Postural Hypotension Been Able To Come Off Their Meds?
I’m on midodrine and my cardiologist is trying to wean me off slowly but my blood pressure goes low again but only at certain times.
When I finally left hospital I was on Midodrine, Flurocortisone and Droxidopa, a total of 15 tablets a day, my blood pressure would drop to 60/40. Since the chemo and Dara I have managed to get the… read more
Swelling Inside Lips
My tongue has been swollen for several months. I noticed the inside of my upper lip felt funny a couple of days ago. Now I have a swollen area inside my upper lip and my lower lip. Could this also be amyloid deposits?
She better take some interest. You life and health are on the line. Maybe she should read what DR google says about it.
Onpattro Vs Amvuttra
After being on Onpattro for 6 months (with great improvement) I was switched to Amvuttra. I received the first shot in December 2022 and scheduled for next one on March 22, 2023. I have noticed a huge decline similar to my pre Onpattro
days. I think I should switch back to Onpattro and will discuss with my doctor on Thursday....6 days before next shot. Can I get feedback? Anyone relate?
will tell you my opinion on this drug . My dad has received two injections of this drug and he hasn't been the same man . He has had an adverse reaction extreme pain in joints arm , knee , foot . He… read more
What Options Are There For Addressing Breathlessness?
Does portable oxygen really improve breathing under exertion like walking uphill?
Has Anyone Taken Tafamidis And Gotten Better?
k
Does Anyone Have Postural Hypotension?
I’m on midodrine for it but my bp goes pretty low when it’s time for the next dose. Anyone have the same problem and what do you do?
MaryAnn… why the switch? Is there less side effects?
Darzalex
Is this medication covered by medicare? How about by medical covetage. I need to know about how costly out of pocket costs may be.
Depends on what you have in addition to to Medicare. Like some I have BCBS Advantage and they pretty much paid for the treatments until I entered the donut hole and then we received bills in the… read more
My Husband Just Got Diagnosed With Hattr-cm Amyloidosis And I Would Like Some Advice On The Best Possible Diet
Thk you so much
Has Anyone Signed Up For The M3 Global Research Surveys ? Is This Legit? R
not familiar
When The Standard Chemo Treatments Aren't That Effective After 17 Treatments, What Is Another Option To Switch To?
I am Millard Collins. I have AL Amyloidosis. At the first part of October 2022 I started taking the usual chemo treatments with Cyclophosphomide, Bortezomib, Daratumumab and Dexamethasone. Starting out my lamba light chains was 92 after 4 1/2 cycles (17 treatments) they only went down to 75 dropping down to 65 once then up to 85 then back down to 75. My SGGT spiked to 276. So we stopped the chemo treatments two weeks ago. I see my oncologist in two days to see what different route we are going… read more
I am being treated with Daratumumab + Dexamethasone every 3 months. It is one of the gold standards for treatment for Amyloidosis. I tend to shy away from any unconventional treatment. If your friend… read more
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