Management of Side Effects -the new page

[bucho]

P.S. What I really salute in forum members such as Biologist, Ray, Cjbrooks, xrn, Brian, adec, et. al. extraordinaire, is that they are taking an active role in working the problem. The valuable core of this forum is these members who are taking on the responsibility to troubleshoot themselves, no longer willing to defer this critical work to the so-called experts (who got us all into this mess). We are left to bootstrap ourselves, and from a debilitated state no less, and yet we are making a lot more progress than those who are supposedly here to "help us," and ultimately the tail will be wagging the dog. Thank you all.

[carbuffmom]

Hi all:

My internet was down for a bit. It's back up and running after a kindly technician gave me a new modem.

My visit to Henry Ford went pretty well. The EMG gave me no side effects this time. No excess twitching. Perhaps, I got the twitches the first time because I was still taking statins??? Who knows??? I don't have the results yet, as the lab was backed up, so I ended up seeing the clinic staff before the EMG.

xrn: You were right. He had not seen the WHO research. He seemed interested in it.

I asked him point blank if he thought my long term statin use could have brought on these symptoms. He said that it is possible. He said he has read some of the studies suggesting this. He also said there is a trial going on right now using Lipitor in ALS patients to stimulate nerve growth. He can count me OUT of that study.

Biologist: I did ask him your question. He said he has had a few patients who progress so far and then stop. He also said there are 6 documented cases of ALS patients who got better. He did not know if they were statin users, though.

I did learn a few things that may be of interest. Creatine has been shown to conserve muscle tissue in mice whether or not they are exercised. They did suggest creatine usage of 5-6 grams per day. You need to take in lots of water or you can get muscle cramps. I get those a lot anyway.

The physical therapist said it's good to get some exercise, but not to overdue. We must listen to our bodies. Her rule of thumb is this: you can do whatever gentle exercise you want, but afterward rest for 30 minutes. If you don't feel as well after the rest period as you did before the exercise, you have done too much.

She suggested walking, stretching (after muscles are warmed up), lifting 1 - 2 pound weights (5 reps 2X per day) to preserve remaining muscles.
They really stressed energy conservation. If you have a busy day coming up, rest before and after.

Vitamin D was also stressed. I have increased mine to 400 mg 3X per day.

The psychiatrist (yes, they had one of those there, too) said the best thing is to have a positive attitude. Easier, said than done, I am afraid.

"The Secret" says before you get out of bed in the morning to say that you are grateful to be overcoming your illness and to ask for, believe and receive it. I keep telling myself that I am getting stronger and my body is healthier. It can't hurt I guess.

The RN asked me if the doctor had recommended Rilutek. He has not so far.

I did ask about a muscle biopsy and spinal tap. He said they were dependent on the results of the EMG.

I go back on Sept. 10. I will keep you posted on the results of the EMG, when I get them. If I can remember anything else of interest, I will post it.

Thanks for you support and good wishes,
Deb

[carbuffmom]

P. S. I did ask about the fuzzy vision (the RN) and she said to see an opthamologist. I did not remember to ask Dr. Newman about this. Sorry.

[Biologist]

That was very helpful, Deb. I am glad the EMG went better! I may have some comments in a few days.

Biologist

[carbuffmom]

Hi all:

A friend sent me this website: *www.thehealthierlife.co.uk/article/2841/ornithine-alpha-ketoglutarate.html

He suggested using this instead of creatine to help with muscle wasting. Has anyone ever heard of it or used it?

Deb

[Biologist]

That was an interesting read, Deb. I will be looking to give that stuff a try. It made me pull out an abandoned half-full bottle of L-Glutamine and take a couple, and I will keep the bottle handy 'til gone -- maybe to be replaced by the new stuff.

BTW, I have been taking the NADH that you recommended trying (and did a fair amount of reading on it). In fact, that is part of what got me off on a previous rant recently in another thread about the need to properly treat heat-sensitive supplements (e.g., avoiding long delivery times in hot trucks). The manufacturer (ENADA) goes through a lot of effort to protect the individual (tiny) pills from heat and light by their individual aluminum wrapping and their special coating to make sure they are not digested in the stomach -- as you know, they have to take with a full glass of water after waking. No eating or going back to bed (and they would rather you not even sit down much for half an hour) such that they can clear the stomach before releasing the compound. Too early to know if they are helping, but I will probably keep taking it. While it is expensive. Ordering online will be the way to go. I think my months supply was about $30 at a health food store -- half that much online.

Here is an interesting and recent article. Goes to show how fast stuff is now happening. I hear similar things with stem cells are in line for ALS-type stuff too. Amazing how these cells migrate to the right places and then go to work. ) Actually, they are "called" to the right places by cell signaling molecules from other cells, and the way they move is pretty interesting too. I have a good analogy for the internal cellular "moving mechanism." In short it's like kids inside a large cardboard box (like for a refrigerator), when they crawl on the inside, it moves around the yard like the treads on a tank or half-track -- we use to do that as kids in my neighborhood.)

*http://www.sciencedaily.com/releases/2007/06/070612105424.htm

"He said he has read some of the studies
suggesting this. He also said there is a
trial going on right now using Lipitor in
ALS patients to stimulate nerve growth.
He can count me OUT of that study."
--Deb

I personally truly believe that THAT is the utility for the study (and similar ones for other diseases) -- to be able to say statins are being explored as therapeutic for the very diseases they cause, immolate or exasperate in order to confuse the issue with the population (particularly the "doctor population"). Smart move. Corrupt and despicable, but smart. Worth several thousand times the cost of the studies themselves. Example: "On the other hand, you know, Mercury is actually being used to TREAT & PREVENT child autism in some places -- there are several new studies planned as we speak. So obviously that cannot be causative. We're innocent, like we've alway's said!" Yeah, RIGHT!

Please keep us posted on your findings.

bucho, that is interesting about your visual experiences. It helps some pieces fall into place. My cameramen needed to be fired today. Low energy too. Hopefully they will be up for a better job tomorrow...

Biologist

[Biologist]

"immolate" = "emulate" in the above post :)

Biologist

[carbuffmom]

Hi Biologist:

FYI: puritanspride.com has a special on right now. Buy one get two free. I got my Enada from them. I know you have to take it on an empty stomach. I must confess, that I have snuck back to bed after taking it once or twice. Won't do that again.

As always, thanks for the support and info.

Have a great weekend.----DEB

[adec]

[quote="Biologist"]"immolate" = "emulate" in the above post

Biologist[/quote]

You don't know how many times posting on this forum I've wished for an edit function.

Carbuffmom: Just be certain that ALL your fat soluble vitamins are oil based, and in gelcap form. Otherwise you definitely will have to co-administer along with an oil (olive, salmon, cod canola, etc.) in order to effectively maintain full absorption. Taking fat soluble vitamins (A, D, E, K) in powder/capsule/pill form can *substantially* reduce absorption.

And since fat-soluble vitamins get stored in the liver and fatty tissues, there's no need to break up supplementation throughout the day, like you would with water soluble vitamins.

[carbuffmom]

Thanks, Adec. Is it okay to take my fat soluble vitamins with a fish oil or coconut oil capsule? I am not quite sure what you mean, but it would be nice not to have to split the dosage throughout the day.

Thanks again. I have really learned a lot from your posts.

Have a good one--------DEB

[JanNelson]

We have been traveling and away from the Internet, so catching up. In May I read on the forum that some MD's were giving Predizone to some muscle damaged statin victims, and as the radon health mines in Montana had allowed us to get our nine year old grandson off the Predizone back in 1997, we decided to give it a try for the statin damage. It has worked! After two weeks and 31 one hour mine visits, hubby now able to sleep longer than 15 to 20 minutes before the muscle pain and stiffness awakens him. He is good for two to four hour stretches of sleep now....(and much less cranky!)

He has also been taking the Carnetine in both forms, the COQ10, Selenium, Vitamin C and Cod liver oil. But the progress is overall a big improvement after almost a year with nothing but pain and muscle weakness.

Of note, I still have the fuzzy vision that started during the one month I was on Lipitor a year ago......

Thanks for all the help on management of the side effects!!!!:D

[xrn]

Prednisone belongs to the class of drugs known as corticosteroids. One issue is that once you take them, you have to tail them off gradually rather than stopping them suddenly. They can stop your body making its own steriods and they can produce a lot of adverse reactions

Before taking prednisone,

tell your doctor and pharmacist if you are allergic to prednisone, any other medications, or any of the inactive ingredients in prednisone tablets or solutions. Ask your doctor or pharmacist for a list of the inactive ingredients.
tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, and nutritional supplements you are taking or plan to take. Be sure to mention any of the following: amiodarone (Cordarone, Pacerone); anticoagulants ('blood thinners') such as warfarin (Coumadin); certain antifungals such as fluconazole (Diflucan), itraconazole (Sporanox), ketoconazole (Nizoral) and voriconazole (Vfend);aprepitant (Emend); aspirin; carbamazepine (Carbatrol, Epitol, Tegretol); cimetidine (Tagamet); clarithromycin (Biaxin, in Prevpak); cyclosporine (Neoral, Sandimmune); delavirdine (Rescriptor); diltiazem (Cardizem, Dilacor, Tiazac, others); dexamethasone (Decadron, Dexpak); diuretics ('water pills'); efavirenz (Sustiva); fluoxetine (Prozac, Sarafem); fluvoxamine (Luvox); griseofulvin (Fulvicin, Grifulvin, Gris-PEG); HIV protease inhibitors including atazanavir (Reyataz), indinavir (Crixivan), lopinavir (in Kaletra), nelfinavir (Viracept), ritonavir (Norvir, in Kaletra), and saquinavir (Fortovase, Invirase); hormonal contraceptives (birth control pills, patches, rings, implants, and injections); lovastatin (Altocor, Mevacor); medications for diabetes; nefazodone; nevirapine (Viramune); phenobarbital; phenytoin (Dilantin, Phenytek); rifabutin (Mycobutin), rifampin (Rifadin, Rimactane, in Rifamate); sertraline (Zoloft); troleandomycin (TAO); verapamil (Calan, Covera, Isoptin, Verelan); and zafirlukast (Accolate).Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
tell your doctor what herbal products you are taking or plan to take, especially St. John's wort.
tell your doctor if you have an eye infection now or have ever had eye infections that come and go and if you have or have ever had threadworms (a type of worm that can live inside the body); diabetes; high blood pressure; emotional problems; mental illness; myasthenia gravis (a condition in which the muscles become weak); osteoporosis (condition in which the bones become weak and fragile and can break easily); seizures; tuberculosis (TB); ulcers; or liver, kidney, intestinal, heart, or thyroid disease.
tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while taking prednisone, call your doctor.
if you are having surgery, including dental surgery, or need emergency medical treatment, tell the doctor, dentist, or medical staff that you are taking or have recently stopped taking prednisone. You should carry a card or wear a bracelet with this information in case you are unable to speak in a medical emergency.
do not have any vaccinations (shots to prevent diseases) without talking to your doctor.
you should know that prednisone may decrease your ability to fight infection and may prevent you from developing symptoms if you get an infection. Stay away from people who are sick and wash your hands often while you are taking this medication. Be sure to avoid people who have chicken pox or measles. Call your doctor immediately if you think you may have been around someone who had chicken pox or measles.

Prednisone may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

headache
dizziness
difficulty falling asleep or staying asleep
inappropriate happiness
extreme changes in mood
changes in personality
bulging eyes
acne
thin, fragile skin
red or purple blotches or lines under the skin
slowed healing of cuts and bruises
increased hair growth
changes in the way fat is spread around the body
extreme tiredness
weak muscles
irregular or absent menstrual periods
decreased sexual desire
heartburn
increased sweating

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

vision problems
eye pain, redness, or tearing
sore throat, fever, chills, cough, or other signs of infection
seizures
depression
loss of contact with reality
confusion
muscle twitching or tightening
shaking of the hands that you cannot control
numbness, burning, or tingling in the face, arms, legs, feet, or hands
upset stomach
vomiting
lightheadedness
irregular heartbeat
sudden weight gain
shortness of breath, especially during the night
dry, hacking cough
swelling or pain in the stomach
swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs
difficulty breathing or swallowing
rash
hives
itching

kind regards,
xrn

[JanNelson]

After reading your warnings, I am happy my spouse was never put on it. But also happy we were able to wean grandson off of it.

[xrn]

[quote="JanNelson"]After reading your warnings, I am happy my spouse was never put on it. But also happy we were able to wean grandson off of it.[/quote]

Glad to learn that, Jan.

kind regards,
xrn