Life post-Lipitor - an update

[cjbrooksjc]

BrianC: Wikipedia credits the discovery (of Statins) to a Japanese scientist but I read somewhere the allegation that research on the action of red yeast rice was passed to Merck by the US Military. May be apocryphal or just noise but certainly I would expect the toxic defence of an obscure Chinese herb to be of interest to any nation's Chemical and Biological Warfare Laboratory.

Isn't it interesting that the discovery of COQ10 is also credited to the Japanese? Introduce the ailment; provide the remedy? .... nah! US Pharma maybe, but not the Japanese!

Brooks

[Brian C.]

My speculation. for what it is worth, is that statins originate from Japanese WWII military research into incapacitating agents.
Of course one can expect supporting evidence to be well "ring fenced" by all concerned, hence the "mystery" surrounding the aetiology.

Brian.

[Ray Holder]

CoQ10 was actually discovered by Dr Fred Crane in 1957, working at the Enzyme Institute of the University of Wisconsin where large amounts of beef hearts had been made available for research. A transcription of an interview he gave to Dr Passwater can be found on his website. A UK professor managed to take all the credit for the discovery!!!

Most Q10 is made in Japan after Merck did a lot of work on it and then sold the process to Japan. I believe a new factory was being built in USA more recently.

Red yeast rice is alleged to be an old chinese herbal medicine.

Ray

[Brian C.]

I believe the inhibition of haeme a may be as important to deteriorating mitochondrial condition as the inhibition of ubiquinone. Professor Bruce Ames at UC Berkeley seems the authority on this less well-known product of the mevalonate pathway and I have written to him for advice on study materials.

Who knows, I might get a response because he seems to come across as a "good egg".

Brian.

[cjbrooksjc]

Well, I don't know if I am getting much better, but I'm sure getting a lot smarter...no, not smarter, better INFORMED. I'll be verbally stunning at partiies if I ever feel well enough to attend one.

Thanks guys,

Brooks

[Biologist]

I am just now getting back to reading in this thread for the first time since the first post I made in it and its immediate response. I just now read from Ray's first post to the end of the thread. Wish I had noticed it last night. Excellent reading. Thanks, guys!

Biologist

[sandybeach458]

Hi Brian,

I have only been off Lipitor since March 30, 2007. I quit cold turkey. I have had no other side affects. I found a supplement called Ambrotose that is working well for me. I was on 20 mg a day for 4 + yrs. Maybe something to check into.

Just keep the faith,
Sandi

[Brian C.]

Hi Sandi! Looks like we came off our Incapacitating Agent at the same time. Just these last couple of days I believe I am feeling that some progress has been made but I'm a bit wary of reporting because of the 'upsy-downsy' nature of convalescence.

I estimate I am putting around 250GBP-worth of supplements down my throat each month but I consider this the best investment I could ever hope to make.

Taking control of one's own treatment/medication is so empowering

May the Force be with you

Brian.

[Brian C.]

Update to the Update.

I am amazed how much better I feel nearly 8 weeks on from stopping the Lipitor. My wife says she hasn't seen me like this for years and on Sunday I wore HER out shopping!
I even did some housework today
The heavy deadness has gone from my legs and angina is nowhere the problem it was only a week or so ago. Recovery after effort is so much swifter.

Hey! I'm like the Duracell bunny now

Be encouraged folks, don't give up the faith

Brian.

[Brian C.]

OK, 10 weeks into the post-Lipitor experience I've had the Upsy time and now it's the turn of Downsy, which began towards the end of last week following a weekend abroad.

Angina is easily triggered by exertion (i.e. walking) and physical activity is exhausting, just like it used to be. On the other hand the upper arm pains are not so much in evidence and I am sleeping well.

Hopefully these periods of regression will get shorter and the periods between longer

I guess this will correlate with most people's experience, at least those without neuropathy.

Brian.

[Brian C.]

OK, it's been 3 months now since I stopped the Lipitor. It's a bit disheartening that I feel as though I am back where I started. Increasing my raft of supplements and patiently awaiting a fresh upturn.
It's a Long Game we're playing.

Brian.

[bucho]

Your ups and downs sound a lot like my experience. I hope so, as I am now greatly improved at 15 months since I quit the zocor. My recovery has definitely been a long, slow roller coaster with several relapses where I felt I was back to square one -- even at 9 months. Things seemed to really improve at about the 1-year anniversary of quitting.

The thing to watch for is a subtle, improving trend, i.e., longer periods between relapses, and more frequent days where you feel significant recovery. I'm convinced that the cellular damage takes a very long time to repair. I heard once that the body has a 7-year cell turnover cycle, so one could argue that a complete recovery, if it's in the cards, could take that long. Good luck and please keep reporting.

[Brian C.]

Thanks bucho. I think it important to share the negatives as well as the positives of post-statin convalescence so that fellow sufferers can develop realistic expectations.

7 years eh? Something to look forward to in my eighth decade! :D

Brian

[Brian C.]

Energy level low. Legs like lead. Feelings of despondency.
Thank goodness for the knowledge that this nightmare will eventually pass.

My wife is slogging her exhausted way through the fag-end of her school term (she's an infant teacher) and my son is home recuperating from an operation. What a fine bunch we make!

Sorry, just felt like a little moan

Weary Willie aka Brian

[cjbrooksjc]

Brian: May be a phase of the moon, but I am also down today and yesterday after a few days of "up". Have to help my daughter today with some physical stuff and I'm NOT looking forward to it. Sometimes though I feel better if I push thru the pain and just keep going (I feel better AFTER; NOT during). Anyway, just a note to say I can commiserate fully. Sad we need it, but good we have this membership for support.

Regards,

Brooks

[Brian C.]

Well, I had to walk down to my solicitors this morning and I did feel better for it thankfully. I coped with the walk better than I feared - and I have been fearing walking lately.

The interview with Karolina yesterday took a fair bit out of me, it does stir things up somewhat. My legs were especially wobbly afterwards.

Thanks for your commiserations Brooks, this little community we have here is a terrific comfort and encouragement.

Brian.

[cjbrooksjc]

Brian: Yes, A comfort! Precisely.

Brooks

[Brian C.]

Back from Barbados, which was a mixed experience but interesting.
As far as post-Lipitor state is concerned I found I was only able to swim one pool width without discomfort until the very end when I was able to manage two. One the first day I dived in the deep end for a normal swim and very quickly regretted my brashness. Sea swimming was quite out of the question and I had to forgo swimming with the turtles, having to watch my wife and the others snorkeling whilst I sat fully-clothed on the catamaran drinking rum punch and jiggling to the reggae
The first morning in the pool my legs got sunburnt even though it was before 9 o'clock in the morning. Maybe photo-sensitivity? After that I wore long trousers and socks with my sandals wherever I went. In that get-up - and with my white beard - I earned the soubriquet "Daddy-O".
At least it wasn't "Grandad" - or "Uncle Albert"!

Brian.

[SusieO]

Glad for the updates. At the end of October 2007 I will be off Lipitor 3 full years and I do feel better, but still have much weakness and pain unless I keep in the house and don't do much of anything. Going shopping or taking walks are few and far between, but 3 years ago I could not do that at all so there has been improvement with many setbacks. I do have many good days and I am very thankful for that!

My doctor put me on Aciphex for acid reflux problems - the insert from the pharmacy said no known side effects. Yesterday was 2 weeks I had been taking them and guess what...last week my muscles began to cramp and ache for no apparent reason. I did a bit of online research and found out all Protein Pump Inhibitors (like Aciphex) can cause cramps, muscle aches/weakness, but it is RARE (my favorite word - not)! So, I called the doc and he said no more of the drugs from that family and now I am starting Zantac this morning - I haven't found anything that says this med will cause the same problem.

What really baffles me is all of you who take the supplements and you seem to be in the same shape that I am and I don't (mostly can't) take any of them. Do you ever wonder if they are really helping? I know when I think about it I wonder if I would be able to take supplements would I be better or the same? There really is no way to tell for sure you only have to hope they are helping.

[Brian C.]

[quote="SusieO"]
What really baffles me is all of you who take the supplements and you seem to be in the same shape that I am and I don't (mostly can't) take any of them. Do you ever wonder if they are really helping? I know when I think about it I wonder if I would be able to take supplements would I be better or the same? There really is no way to tell for sure you only have to hope they are helping.[/quote]

It's an act of faith, bolstered by by the findings of our friends here, but I often wonder the same thing.
Just got to be patient and consider the expenditure an investment I tells myself....

Brian.