My Statin Story - Read The Introduction First

[wlee3262]

I am the 'new kid on the block.' Thank you for allowing me to participate. I have followed this forum for a number of years.

I would like to tell my textbook story, but I am not looking for a pitty party, but maybe some insight on this illness.

My adverse reaction to Pravachol was in Jan. 2001, so I have just had my 15th anniversary. The history of this illness for me is one of being very medically underserved. My CK level is one that has never returned to a normal level. Muscle biopsy was felt not to be necessary. I have seen my PCP who manages my symptoms, but its a shot in the dark at best. I had a recent referral to a local pain clinic affiliated with Dartmouth-Hitchcock. In the first 10 minutes, the MD said, 'I only work with opoids, if you don't want them, I can't help you.'

I was referred to rheumatology, given an RX for gabapentin and in the first three days had all the very worst side effects listed. I still have eye twitching so I can't read! More meds were offered for what was diagnosed as Fibromyalgia. Despite my trying to explain my 15 year history of what was diagnosed as Rhabdomyolysis and Statin-Induced Myopathy, I could not seem to reason that even though some symptoms seem the same, it is clearly not Fibromyalgia.

In following this website, which has been the most sound information I have gotten, I have once again "stalled out medically."

In 15 years, I am no better, sometimes worse, having given up work except for 2 mornings/week. Winters are horrible, every spring its like rehabbing myself all over to step up my activity. I do yoga, stretching, some weights, tai chi and love to walk. Pain is a 6-8 90% of the time, the best is a 5. Sleep is horrible.

Any comments you would offer will be gratefully accepted. Are there any docs in the Northeast that have real experience in dealing with this? Is it common to receive a diagnosis of Fibromyalgia? I also have all the Graveline books, I am such a classic to the memory issues, pain issues, mobility, flexibility. I consider this to have been a major life changing event. I try to do everything I can to help myself. Thank you for listening.

[DocM]

This is a copy of a post I've made previously to Diabetes Forum...

As a physician, for years I subscribed to the Statin dogma. Taking them for 2 years from 2011 changed my opinion. I was one of the 25% or so who must have the genes that make Statin side-effects more likely. Not straight away, problems developed in a subtle way, becoming progressive after 9 months or so. Symptoms included muscle wasting, weakness, muscle fibre tears [particularly in the calf, I'm a jogger] tendon tears, low mood, cognitive issues, peripheral neuritis, loss of joint position sense, ED, sluggish bowel etc.
On Simvastatin 10mg my total cholesterol was in the 3's. Now, without Statins my level is 4.3. Not that I'm at all interested. CHD prevention does not require low cholesterol, it needs low intravascular inflammation. Statins work, modestly, by suppressing inflammation.
I'm convinced that the data on Statins has been cherry-picked by the Pharma companies and the profession has swallowed it hook, line and sinker. The 2013 Lancet Meta-analysis on Statins involved, I believe 28 trials, all but one sponsored by drug companies. The trials were not properly blinded and everyone knew which subjects received the Statin. There was more surgical and other intervention in the Statin group. There is also the issue of absolute versus relative risk. The results show the what that the Physicians believe in and what the companies seek. It is interesting to see that there's more scepticism in Italy regarding Statins and omega-3s are used a lot instead.
I've gradually recovered from what I see as Statin toxicity, probably aided by self-medication with Ubiquinol and PQQ [repairing the mitochondrial damage inflicted]. I can now complete 3x 5km runs each week with no muscle tears.
I do not advise stopping Statins if one is at high risk [angina, previous MI, stroke etc] but arm yourself with a big dose of scepticism ,question the physicians and maintain 3G/day intake of omega-3 fatty acids.

[cjbrooksjc]

Wlee: Dave Staup, a long-standing member on this site, has found relief with daily, low dose Benadryl; still one of the most effective allergy medications available. I can't confirm his (low dose) finding simply because I have not applied it to my symptoms for an extended period. When I am in real pain I DO get temp relief from various allergy meds including Loratadine (**https://www.drugs.com/loratadine.html). I have also been found to have some kidney dysfunction (following Statin use for 5 yrs.), and find a trip to the Gym for a 30 minute Sauna, either steam of dry, (or both) will relieve my symptoms of lassitude, joint pain, malaise, etc. for a time (**www.sharecare.com › ... › Skin Care › Healthy Skin › Functions of Skin). It wipes me out for the rest of the day, but I sleep reasonably well following. I also take the broad spectrum of meds we all ascribe to PQQ, Uridine, Ubiquinol, etc. In the end I still have to manage the physical anomalies on a daily basis and have found no permanent fix. Good luck in your search. Remove the parens and asterisks before you link to the URLs referenced above.

Best,
Brooks

[David Staup]

DocM, Wlee

see here for the low dose Benadryl:

https://www.spacedoc.com/board/viewtopic.php?f=1&t=1961

read through to updates on page 3

for feedback see here:
https://www.spacedoc.com/board/viewtopic.php?f=1&t=2915

DocM If you want feedback from a physician on just how effective this treatment is let me know. My current physician,I treated several of my neighbors that are his patients before I went to him, he has seen it first hand.
my email is dstaupATcharter.net

[wlee3262]

David,
Thank you for the suggestion of LDB. I have started on this, taking in the PM. I feel that I breathe more freely and some of my joints and muscles have 'unlocked.' Continuing on my searching and researching. Not looking forward to going into cold weather. Thank you again. I am so pleased that Spacedoc will continue.