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doodersnana
@doodersnana

Posts: 1
Joined: Jan 18, 2018

Lyrica

Posted by @doodersnana, Thu, Jan 18 2:56pm

I was diagnosed with AL Amyloidosis ( primarily kidney ) in 2014 , had a successful sct in 2015 and have been in remission for almost 3 years… God is good . I was left with GI issues and neuropathy . I have been on the max dose of gabapentin for 3 years and it apparently has stopped helping as much . My new pain doctor has prescribed Lyrica but I read about ‘ gastrointestinal amyloidosis ‘ caused by Lyrica ? Can I get gastrointestinal amyloidosis from taking Lyrica in addition to the amyloidosis I have been treated for ?

REPLY

Hi DoodersNana, welcome to Connect. I’d like to introduce you to @oldkarl who also has AL Amyloidosis and neuropathy. Karl, have you taken Lyrica?
I’m also tagging @johnbishop to bring him into the discussion.
DoodersNana, where did you read about the link between Lyrica and gastrointestinal amyloidosis? Is your neuropathy in your feet?

Hi @doodersnana — I would like to add my welcome to Connect along with Colleen and other members. I’m hoping @oldkarl will join the discussion and have some answers for you. I only have numbness for the symptoms of my neuropathy and Lyrica, gabapentin and other drugs do not help with numbness. The drugs only help with pain by masking or blocking the pain signals from the damaged nerves so that your brain doesn’t receive the pain signals.

It might be helpful for other members who are reading your post if you can answer Colleen’s questions about how you learned of the link between Lyrica and gastrointestinal amyloidosis and where your neuropathy is.

Here is a list of side effects of Lyrica: https://www.drugs.com/sfx/lyrica-side-effects.html

Also, here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

John

@doodersnana Hi, my friend.
Hi, again. Welcome to the crowd of folks who fight these non-sense pains day after day after day. Polyneuropathy is, in itself, perhaps the greatest source of human pain and discomfort. Well, of course, second to mosquito bites. But mosquito bites are very similar to PN, perhaps they should be lumped together. Oh, well. I have PN all over my body, and have for many years. Toes to scalp, pinky finger to pinky finger. And honestly, I have not found anything that truly works in every case. I was happy when my doctor prescribed lyrica, for It was advertised as something to cure PN. It only seemed to make matters worse. I do not know whether my PN is an attack on the myelin sheath or the axon of the nerves. I only know that it is in everything. The only thing I have found that actually helps is a variety of forms of meditation or self-hypnosis. I have never tried acupuncture or standard other-person guided hypnosis. But somehow I have to find ways to convince my brain that I am sturdy enough to just ignore the PN. But that is very difficult. I tend to ignore the sensations coming from my feet, hands, tongue, etc. And that gets me into trouble. I miss steps and fall. I cut myself on sharp rocks or broken glass. I only realize much later that the pretty lady was flirting with me. And that is the biggest problem—not the pretty lady, but that I teach myself to ignore signals coming from outside myself. Folks think I am stuck up or aloof because I do not answer or speak to them. The truth is that I do ignore a lot of signals from all my receivers…eyes, ears, tough, taste, etc.So I fight this constant battle with PN, knowing that I have almost no chance of curing my disorder before my own death. I only pray that I will be alert enough to raise my fist and knock on the golden door when that time comes. Sometimes I lay in bed at night, thinking about my on hATTRwt, and that of my siblings, children, grandchildren, cousins, etc, all fighting the same battles. And I often think, Lord, take me now. But I do, then, rise in the morning, having convinced myself that I can make it one more day.

@colleenyoung

Hi DoodersNana, welcome to Connect. I’d like to introduce you to @oldkarl who also has AL Amyloidosis and neuropathy. Karl, have you taken Lyrica?
I’m also tagging @johnbishop to bring him into the discussion.
DoodersNana, where did you read about the link between Lyrica and gastrointestinal amyloidosis? Is your neuropathy in your feet?

Jump to this post

@doodersnana Just a short note. I took Lyrica for about two years. It never had any effect on my PN. None.

@doodersnana Hi, friend. Maybe a little bit about my Amy. Primary Systemic hATTRwt, with known involvement in brain, tongue, larynx, thyroid, parathyroids, esophagus, stomach, intestines, spleen, heart, pancreas, lungs, liver, kidneys, bladder, prostrate, urethra, colon, RA, Psoriatic Arthritis, corneas, skin, toes, foot tendons, lower legs, serum, plasma, diaphragm, ankles…. I think that’s about it. Anyway, almost all my close family has some mutation of hATTRwt. Multiple myeloma, Gelsolin, Cystatin C, Cortex Misfolded Protein Deposit, Apolipoprotein, Lysozome, etc. We can trace in back personally to a family which lived in Ioway and Kansas in the 1890s. As you might know, lot’s of Amy cases have been around since Henry II in the 900s, and probably through his people coming down from Finland, Iceland or Norway as Vikings to Normandy, then the British Isles, and America. Since the Vikings traveled around the world from about 400 to 1000, They might have picked it up from Southern Africa, the Americas, or even just developed it themselves through intra-breeding or something. But in any case, very few modern medicines do work. One possible med that is available this month is Patisaran. I saw a note on the FDA site that it had been approved for use for various forms of Amy. You might as your doctor to help you with it. I think it is made by one of the better American companies. It might be a good shot at dealing with our pain. Incidentally, did you know there is actually a similar disorder known as the “Evans Syndrome”?

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