Life immediately post-Lipitor.

[Brian C.]

I am now at last completely off Lipitor after a protracted period of reducing dosage. Since I have FH I am aiming to control my cholesterol level simply to prevent the return of the xanthomas that I used to have on the ligaments of my hands and on my Achilles tendons. I think "high normal" should be OK.
To this end I am still taking Questran and Niaspan in addition to about a dozen or so supplements including all "the usuals" regularly mentioned here.
Next blood testing will be performed by my endocrinologist on the 1st May.

As I expected I am feeling worse, with my stamina at its lowest ebb - a 2 mile walk across the valley to lunch at a pub yesterday knocked me up for the rest of the day - and into today too. Also muscle pain in my upper arm is as bad as it has ever been in the years that I have been suffering (I only linked it with statin use after discovering this forum).

Since any form of strenuous exercise is out of the question I have taken up the Zhan Zhuang ("standing like a tree") form of Chi Kung (Qigong) as a path to strength and fitness without the risk of incurring fresh - or exacerbating existing - muscular damage.

Hope this is of interest and of relevance to others.

Brian (survivor of 17 years on statins)

[cjbrooksjc]

Brian: My God, 17 years! It may take some time to make a noticable recovery. After 3.5 yrs on Statins, it took about 4 months (including a measurable decline in my symptoms immediately following the end of Statin use) before I began to feel better, and still today, after 6 months, I had a minor setback, but this evening I am feeling well again. It's a long road from my experience, but at least there is a direction to follow, and it seems to be working. Also, I have been considering Tai Chi as there is an instructor nearby. Best of luck!

Regards,

Brooks

[Brian C.]

[quote="cjbrooksjc"]Best of luck!Brooks[/quote]

Thanks Brooks, looks like I'm in for the long haul.

At least I'm not afraid of certain foods anymore

Dad died of a CT at 49 and I have had an occluded LAD coronary for the last 20 years so it's taken a while for me to build up the courage - but this of course where education comes in, thanks to Drs Graveline, Ravnskov et al.
So in turn I'm educating my good Docs

Brian.

[carbuffmom]

Hi Brian:

I am a 13 year user of statins, mostly zocor and then vytorin. I know how you feel. I think it's going to take a lot of time to overcome this. I mainly suffer arm and shoulder and hand weakness. Exercise causes me problems too, especially weakness. Hang in there... hopefully better days are ahead. DEB

[Brian C.]

Thanks for your words of encouragement Deb :)

Brian.

[Cat Mom2]

I am afraid that if I had been on it that long, I would have died before the 10th year or been in a nursing home where I would have grieved myself to death. I was on them 6 years and I did not realize how much of my life the stuff had stolen from me until I got off of it.

I will be off a year July 2007 and I am still worried about what permanent damage the stuff has done to my body. I can only imagine how long any signs of improvement would take for you after all that time on it... The sad part of it is that the doctors have no clue and if they did, they wouldn't know what to do anyway.

[Brian C.]

Very strange. This weekend I have experienced one of the very worst colds of my life quite out of the blue. No one else around me has had one, my forays to the outside world have been brief and limited - and I've been taking mega-doses of Vit C (amongst a broad spectrum of supplements) for a long, long time. The weather has been beautiful and I had been practicing janjong qigong in the garden the past week. I guess I may have inadvertently chilled but......

Brian

[adec]

I can only tell you guys (in plain simple language) about my mom and aunt's situation, and how it got much worse before ever getting better. I still believe our tackling the situation in an *immediate* and direct fashion gave them their best chance at total recovery. In my opinion, the longer things remain the same, the greater a chance for these myraid of problems to compound themselves and become permanent and/or possibly life-threatening. Just like you wouldn't wait six months to apply a cast to a broken arm, and expect it to fully heal.

In fact, just stopping statins *isn't* enough. I recommend trying everything (within reason) that you believe will help. That's why I incessantly write so much about other things statins can deplete, besides just CoQ10.... vitamin A, D, E, K, enzymes, aminos etc. These mostly overlooked things are *just as vital* to maintaining human health. And there's still so little known, so much to be studied, about the scope and consequences of broad and smothering CoA inhibition.

Anyway, I basically placed my mom on a two-year plan, and 1.5 years into this plan the results have been WAY better than expected. I especially applaud her commitment in taking these supplements almost religiously during this time. She was the VERY reason that the light at the end of the tunnel has arrived.

I too believe everyone here has that same potential and ability for recovery with a good deal of practical knowledge, desire, commitment, and yes, hard work. I stick around here compelled to impart that same experience, to let everyone know that it can be done, full recovery is indeed possible. Better days are ahead. And good luck to anyone and everyone spending their invaluable time to read these words.

[Brian C.]

Thanks adec. I think it is a very important message to get across that we must PERSEVERE when we come off statins. I know I must be in for a particularly long hall after 17 years, with the last few years on the maximum 80mg Lipitor. I am spending at least 200GBP each month on supplements and view this as a long-term investment.
We must also be commited to a lifetime of learning, I am sure there is still much to be discovered about the effects of statins in our bodies and ways to ameliorate them.

At the very least we have walked away from a major scam!

Brian.

[cjbrooksjc]

Brian C.: One of the side effects for me while on statins was a high susceptibility (sp?) to viral infection. Twice the colds (unusually severe) became viral pneumonia (be advised) and required bed rest and steriod treatment. The came on so fast; without warning, that I was often caught off guard somewhere away from home. This may be a lingering effect, but treat it seriously.

Regards,

Brooks

[Brian C.]

Thanks for the warning Brooks. I posted half-dreading to hear what your saying. Wonder if any other participants/visitors here have had similar experience.

Brian.

[Brian C.]

After 17 days from stopping Lipitor 80mg I have something positive to report - the "damaged muscle" pain in my upper right arm that I have had since I-can't-remember-when seems now to have significantly diminished. Just a dull feeling in place of sharp pain

I am currently taking 1g L-Carnitine + 1g Acetyl-L-Carnitine + 600mg Propionyl-L-Carnitine (as Glycine P-L-C) + 300mg Q-10 and performing 10 minute static qi gong (jan jong) exercise each day.

Brian

[bucho]

Yup, my left arm tricep felt like a burning coal for more than 6 months straight before I quit the zocor. I was constantly massaging it at my desk, in meetings, at the dinner table, in bed,.... Interestingly, massaging it didn't even feel good or bring relief, as it does for a normal sore muscle, but I would do it instinctively.

As in your case, that burning coal was the first thing to correct itself when I quit the zocor. It went away after a few weeks (we "veterans" think in months, not weeks, so can't remember exactly how many weeks) and never came back! That's when I started to hope.

Congratulations on this first sign of recovery, and there may be many more improvements waiting for you in the months ahead.

[poohhel]

Oh boy Bucho... I hope I will follow you and Brian C and eventually get rid of the "burning coal" in the triceps and biceps of both arms and in my calves and thighs of both legs...

[Brian C.]

Another positive thing to report.
After 3 Lipitor-free weeks I seem to be able to now sleep on my right side without waking to grab an antacid! :)
I was getting a feeling of queasiness as well as acid reflux.
Onward and upward!

Brian

[poohhel]

I got my results back from my EMG and NCV test and it appears I have 5 pinched nerves...ummm... so I will be starting physical therapy this next week and back on gabapentin to help curb the neuropathy symptoms and pain. Hopefully, this is the real deal. No matter what I still am not going back on statins.

[Brian C.]

Ow! The best of luck poohhel.
I know nothing about pinched nerves and their treatment.
What is the gabapentin supposed to do?

Statins are history and we know more than most docs, who are head-down in the trough.

Brian.

[bunnylady]

Brian- the statins seem to exacerbate existing conditions that were treatable like Prevacid for acid reflux and Dimetapp for seasonal allergies into all out pain in the butt conditions- I have had to double my acid reflux medicine and burp like a man- its disgusting- I can feel the liquid in my throat at night burning my throat- I'll probably get esopgheal (sp?) cancer

I also had a case of bronchitis in Dec that came on fast, lasted a month and thought it would kill me- I took prednisone as I couldn't deal with all of the symptoms plus the bronchitis- it returned a few weeks ago and I had Zythromax (an antibiotic) on hand and took it right away- it thwarted the impending infection

I know you are in the UK but if you go to Costco.com and click on exercise equipment, look for the Ironman Resolution Machine- it vibrates your muscles and exercises them- 10 minutes of vibration is equal to 30 minutes of walking- I can manage to stand there and vibrate away- but usually limit it to 5 minutes until I build it up- it is helping a lot

Good luck to you!

[poohhel]

[quote="Brian C."]Ow! The best of luck poohhel.
I know nothing about pinched nerves and their treatment.
What is the gabapentin supposed to do?

Statins are history and we know more than most docs, who are head-down in the trough.

Brian.[/quote]

Brian...Here some information I researched on pinched nerves specifically the 5 regions where my doctor says my nerves are being pinched...

A Pinched nerve is the term for pain or impaired function of a nerve that is under pressure. It happens to nerves that control muscle movements or relay sensations to the brain.

The initial symptoms of a pinched nerve may be tingling, numbness, burning sensation or shooting pains down the buttocks and legs or in the neck, shoulders, arms and fingers.

Sometimes the pains and sensations are distant from the point of pressure. For instance, a pinched nerve in the low back may cause pain in the calf as the only symptom. When there is nerve damage from constant pressure, pain and weakness may increase. There may be a loss of reflexes, movement skills, sensation in the affected area, and withering (atrophy) of the affected muscles can occur.

If a nerve gets "pinched" the flow up and down the inside of the hose is reduced or blocked and the nutrients stop flowing. Eventually the membrane starts to loose its healthy ability to transmit the tiny electrical charges and the nerve fiber may eventually die. When enough fibers stop working, the skin may feel numbness or a muscle may not contract.

When one has a pinched nerve in the low back, pain is usually perceived as radiating down the leg. When one has a pinched nerve in the neck, pain emanates from the neck, through the shoulders, down the arms and into the hands.

Pinched nerve at L5 - The L5 nerve supplies the nerves to the muscles that raise the foot and big toe, and consequently, impingement of this nerve may lead to weakness in these muscles. Numbness for L5 runs over the top of the foot. Pain will be in the lower back running to the hip, down the lateral part of your thigh and calf and to the top of the foot. a lumbar segment 5 (L5) nerve impingement can cause weakness in extension of the big toe and potentially in the ankle (foot drop).


Pinched nerve at S1 - Impingement of the S1 nerve can lead to weakness with the large gastronemius muscle in the back of the calf, causing difficulty with foot push off. Numbness for the S1 nerve runs on the outside of the foot. Pain will be in the lower back running to the buttocks, down the back of the thigh and calf to the lateral aspect of the foot (to the little toe).

Pinched nerve at C5 - This can cause shoulder pain, deltoid weakness, and possibly a small area of numbness in the shoulder. On physical exam, a patient's biceps reflex may be diminished.

Pinched nerve at C6 - This can cause weakness in the biceps and wrist extensors, and pain/numbness that runs down the arm to the thumb. On physical exam, the brachioradialis reflex (mid-forearm) may be diminished.

Pinched nerve at C7 - This can cause pain/numbness that runs down the arm to the middle finger. On physical exam, the triceps reflex may be diminished. Also causing the beginning of carpal tunnel in my left hand.

Some complications or secondary illnesses resulting from pinched nerves is the perpherial neuropathy. My doctor says that he believes now my Neuropathy is a result of the Pinched Nerves and as soon as we have that managed my P.Neuropathy should go a way...hope so.

Initial Treatment is meds to keep down inflammation, neurontins (which are pain killers that work on nerve endings and not kidney or liver), and physical therapy.

If this does not relieve pain, next is cortizone shots in the specific locals on the spine

Lastly, surgery to remove bone spurs or discs... etc.

The Gabapentin is a brand of neurontin medication for relieving neuropathy symptoms and the pain, it works on the nerves.

[Brian C.]

I see. Thanks poohhel, I'm relieved for you that it doesn't sound a life sentence

Brian.