• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Lingering statin side effects

Messages
16
This thread consists of posts which have been moved from the following thread at user's request, to create a new thread, as they were getting off-topic: https://forums.phoenixrising.me/index.php?threads/metabolic-myopathy.62056/

hi @pogoman,
Not sure where to post this, so please pardon me.
I read your story and you are suffering 100% like me. you took statin and I used saw palmetto (betasitosterol main ingredient). How are you feeling now? any improvement. I am in very bad condition. My main symptoms are fatigue, nausea, no appetite, shallow sleep, big belly, very low testosterone, myopathy. Doctors could not find anything so far. I have a lot of muscle and bone pains. My muslces and bones are very weak now.
 
Last edited by a moderator:

pogoman

Senior Member
Messages
292
hi Pogoman,
Not sure where to post this, so please pardon me.
I read your story and you are suffering 100% like me. you took statin and I used saw palmetto (betasitosterol main ingredient). How are you feeling now? any improvement. I am in very bad condition. My main symptoms are fatigue, nausea, no appetite, shallow sleep, big belly, very low testosterone, myopathy. Doctors could not find anything so far. I have a lot of muscle and bone pains. My muslces and bones are very weak now.

Sorry that your are going thru this, it has been a long slog but hopefully research will find better treatments as time goes on.
I am doing better the past couple months after doing rituximab in July.
This is what I've been doing to improve my health.

For sure I have what is now called NAM, necrotizing autoimmune myopathy and probably a coexisting neuropathy.
It was really slow improvements for the first months, a little bit more strength here, less morning pain there sort of thing.
In September after doing research on why I felt better after eating shrimp correlating that to how NAM works, I came across that NAM is related to or even primarily caused by mitochondrial damage from using statins or fibrates.
Not to get too deep into the scientific mumbojumbo but free radical damage in the mitochondria may be increased by statin and fibrate damage to various energy processes.

I found that shrimp are high in the antioxidant astaxanthin, I picked some up off of Amazon and later added olive leaf and pycnogenol.
I also continued with the various fat based vitamins, vitamin C and amino acids/proteins I already was taking.
I noticed steady improvement the following month after starting this, less breakout pain and able to function better under hard work conditions.
I saw my neurologist earlier this month, he also noticed my improvement and ordered rituximab treatment for next month.

I did find a Facebook closed group for myositis that is also open to NAM patients run by the Myositis Support and Understanding Association, it may be of help if you can join.
https://www.facebook.com/groups/myositissupport/
 
Messages
16
Thanks a lot Pogoman.
If you don't mind how is your testosterone level sexual life? Mine is ruined.
1- Did T level and sexual health improve after the treatment?
2- your muscle strength and sleep?

My T level is very low. I had no problem before this mess. Was normal just like any body. It happened very quickly only within few weeks (or maybe 1-2 weeks) of taking saw palmetto.
 

pogoman

Senior Member
Messages
292
Thanks a lot Pogoman.
If you don't mind how is your testosterone level sexual life? Mine is ruined.
1- Did T level and sexual health improve after the treatment?
2- your muscle strength and sleep?

My T level is very low. I had no problem before this mess. Was normal just like any body. It happened very quickly only within few weeks (or maybe 1-2 weeks) of taking saw palmetto.

Yeah my hormone system has been repressed for a long time, I qualify for TRT but since thats a one way street I want to see if I can kick start my hormones first.
After seeing other improvements from the rituximab treatment I am trying dhea, pregesterone, pregnenolone and dim to see if they help.

Strength is noticeably better, sleep is dependent on if neuropathy shows up. I've just switched from flexeril to a less drowsy muscle relaxant and I feel more rested in the morning now.

I would suggest talking to your doctor on whether your myopathy is inflammatory or not.
If its not, talk to him/her about the possibility its autoimmune caused like NAM.

I've had signs of mine all my adult life, besides low hormone levels I've been anemic since they first tested me in the 90s and they never did find a cause.
The endocrinologist I saw for awhile stated its the myopathy causing all this, her opinion helped sway my neuro to try autoimmune treatments.
 
Messages
16
Yeah my hormone system has been repressed for a long time, I qualify for TRT but since thats a one way street I want to see if I can kick start my hormones first.
After seeing other improvements from the rituximab treatment I am trying dhea, pregesterone, pregnenolone and dim to see if they help.

Strength is noticeably better, sleep is dependent on if neuropathy shows up. I've just switched from flexeril to a less drowsy muscle relaxant and I feel more rested in the morning now.

I would suggest talking to your doctor on whether your myopathy is inflammatory or not.
If its not, talk to him/her about the possibility its autoimmune caused like NAM.

I've had signs of mine all my adult life, besides low hormone levels I've been anemic since they first tested me in the 90s and they never did find a cause.
The endocrinologist I saw for awhile stated its the myopathy causing all this, her opinion helped sway my neuro to try autoimmune treatments.
Pogoman I have some more questions to ask but this is not my or your thread. Could you take discussion to other thread of your own where we can chat?
thanks
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
Pogoman I have some more questions to ask but this is not my or your thread. Could you take discussion to other thread of your own where we can chat?
thanks
@sp2000, @pogoman - I can move the posts that are just between the 2 of you to a new thread if you like - just let me know. Also @sp2000, let me know what title you would like for the new thread.

BTW, @sp2000 - it's best to put the "@" sign before the name of a user you are trying to reach. That way they will get an alert that they have tagged you.
 
Messages
16
@pogoman
Could you please describe your story? how this all started? I first thought you were normal healthy person and then used Statins, which affected your health badly but looks it is not true.
 

pogoman

Senior Member
Messages
292
Thank you @Mary

@pogoman
Could you please describe your story? how this all started? I first thought you were normal healthy person and then used Statins, which affected your health badly but looks it is not true.

Yes, statins were really not a factor in my case, I tried a couple statins for the first time in 2012 after I couldn't tolerate fibrates for my super high triglycerides but I already had muscle issues.

For me it was various health issues getting worse as I got older, muscle pain, insomnia, IBS and unable to do hard physical work without what I considered excessive pain and fatigue afterwards.
In 1998 I saw my doctor about stomach issues, after a bunch of tests they found high trigs and anemia and progressively lowering testosterone and thyroid numbers.

After a decade on fibrates my doctor had me stop because I had muscle pain and stomach issues.
I'm sure my doctors then thought I was a hypochondriac, visually I was muscular and even with a prosthetic leg due to a vehicle accident I've had an active job and worked out with weights til it got too painful.

Eventually after changing doctors, a high CPK test was found high which led to an EMG and nerve conduction test which led to a muscle biopsy confirming a "toxic myopathy" with necrosis and nerve regeneration.

Since then, Ive been on IVIG then methotrexate and now rituximab.
My neuro definitely now is conviced its NAM, I also started seeing a geneticist at Kaiser's Metabolic Center and he thinks I have an unknown genetic neuropathy and lipodystrophy.
While he has to defer to the neuro for my treatment he has recommended medicines that have helped with the neuropathy effects I suffer thru at night.

And something I thought I should mention as its really helped me stay off the opiate meds since I discovered it.
Theres a thing called a mitochondrial cocktail.
I didn't know it had a name for it at the time but what I found out was that vitamin B2 riboflavin, coq10 and L-carnitine helped cut down the pain and neuropathy.
There are various cocktails that also include other B vitamins and amino acids but these three core supplements I take every day.
When I have stopped because I ran out or used a lesser quality version, my muscle and nerve pain increases tenfold every time.
 
Messages
16
So what do you think what cause your T and Thyroid go low? what was the trigger? Have you used any shampoo, or Acne medicine like Accutane or high blood pressure medicine?
Do you know any body with positive HMGCR antibodies test after statins?
My friend has got sides after using Statins. He is hypo now, very low T level. Doctore wants to put him on TRT but he refused.
 

pogoman

Senior Member
Messages
292
Also have you tried Turmeric or Vitamin D? what effects you got?

I've tried tumeric before with no improvement, vitamin D I take regularly along with A and E.
I've tested low for vit D before so for me its one of the required vitamins.

So what do you think what cause your T and Thyroid go low? what was the trigger? Have you used any shampoo, or Acne medicine like Accutane or high blood pressure medicine?
Do you know any body with positive HMGCR antibodies test after statins?
My friend has got sides after using Statins. He is hypo now, very low T level. Doctore wants to put him on TRT but he refused.

Never took Accutane, only started BP meds four or five years ago so not a cause.

From looking at it now, its the myopathy and maybe the neuropathy together is causing my low hormones and anemia.
There was just a growing list of ailments as I got older, I knew something was off kilter but two decades ago nothing was known about necrotising autoimmune myopathies or genetic diseases compared to now.

It could also be connected to the longtime muscle contractures that the geneticist believes is caused by the neuropathy.
I have hammer toes that I've had since forever along with congenital flat foot and bent fingers, the geneticist suggested I take a muscle relaxer and an anticonvulsant called oxcarbazepine .
They have been helping the neuropathy and muscle tightness I get every night.

Tipping point was in 2011 to 2012 when I had to work a lot of overtime at the job, foot and ankle pain started up and the night time neuropathy and pain increased so bad I had to take norco for it.
I had to push my primary doctor to do tests and eventually he tested for CPK, that led to the rest of what I've already mentioned.

Regarding HMGCR and anti-SRP, its basically if one tests positive for one of the antibodies then its NAM.
But not all with NAM will test positive.
I tested negative for both in 2015 when the tests first came out and negative again before I did rituximab.
I forget the exact numbers but roughly a third to half of NAM patients will test positive so there's a big percentage probably don't have a statin cause.

TRT is a personal choice, once you start it you have to stay on it to maintain T levels.
I prefer to find out if the rituximab will help before deciding to do TRT, it has its own side effects too.