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Did Anyone Else Lose Their Sense Of Taste After Diagnosis Of Amyloidosis?
I’m feeling well just think I have lost my sense of taste. It may have been before I actually was diagnosed and before I started Vyndamax.
I sometimes feel like my sense of taste has changed. Most foods have a salty taste to me. Even those I know we have not added salt to.
I Have Been Prescribed Vyndamax As A Treatment For My Amyloidosis.
My insurance company tells me there is a $5,000 co-pay for this prescription. Does anyone know of a plan or program that can get this fee reduced to a reasonable co-pay?
There are grants available first of each year.....my doctor's nurse helped me thru the process. It is too expensive and needs to be more affordable. I paid and then on catastrophic for rest of… read more
Hi. Been Diagnosed With AL Amyloidosis In May But Haven't Started Treatment Yet. Are Essential Oils Safe To Use After You Begin Medication?
I've been using a few drops of bergamot with sesame oil and it helps my excruciating knee pain! I'm not on medication yet because I'm still waiting for an appointment and know that I would need to clear this with the haematolgy team because essential oils can prevent prescribed medication from working. Can anyone please point me in the direction of studies about the benefits of essential oils with regards to amyloidosis? I've always relied on home remedies in the past and seldom visited the… read more
Hi Beverly, I'm on the NHS waiting list for an appointment. Met with haematology yesterday and they were surprised that I hadn't been seen yet! Extremely frustrated and hoping for a date soon. Only… read more
Along With Lightheadedness Does Anyone Else Have Symptoms Of Tinnitus And Light Sensitivity When Doing Moderate Too Strenuous Activity?
These symptoms along with water weight was what led doctors to diagnosing amyloidosis. When the onset of lightheadedness is about to happen with me I get moderate to severe tinnitus and light sensitivity that requires me to stop what I’m doing and let the event pass. I also get moderate headaches when this happens. I’m concerned that this might lead to a stroke. Working with my doctors to determine if this is a symptom of amyloidosis or something else. Thank you.
Johnny
The context provided does not mention tinnitus or light sensitivity as symptoms associated with amyloidosis. However, it does detail several other symptoms that may occur, including:
-… read more
I Have Wt ATTR-CM. Any Of Us With Afib/Aflutter Arrhythmias To, How Many Are Taking Tikosyn To Control It?
Billy, me too. My last ablation was 8/2023.
At What Point During Treatment Did You Feel You Had Your Muscle Strength Back? During Or After Chemotherapy?
What I didn't say was that when my wife told him I had been digging trenches for a yard watering system he cautioned me not to overdo it. "Take it easy for a while" was his suggestion, and "don't over… read more
Has Anyone Seen The Relationship Between Being Winded And Recent Lung Drains?
On two pairs of walks I have noticed significant improvement in breathing and consequently energy soon after getting my lung drained. I am walking on hilly neighborhood streets. On first walk prior to having my lung drained I am winded walking up a steep hill. Next morning I had my lung drained and later in the day upon repeating the same walk, I observed significant improvement in breathing and consequently improvement of energy. I did the same experiment later , before and after getting… read more
And Beverly, that is the $ million question. Why do my blood vessels leak? Give me a month or so to rummage around the Internet to answer your question. I think part of the problem has been my low… read more
Are You Frustrated With Finding Effective Treatments For Amyloidosis?
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Has Anyone Been Prescribed Oral Pomalyst? Any Side Effects? How Did It Make You Feel While Taking It?
This is going to added to treatment plan and wondering about this.
Wow!
My PAN Grant Is Expiring. What Are My Other Options?
If your Patient Access Network (PAN) grant is expiring, here are some other options you can consider:
1. Medicare: Visit Medicare.gov to explore available options
2. State Pharmaceutical Assistance… read more
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