Cathy,
I am trying to get an answer on recommendations to relieve/reduce the leg pain from thalidomide from a specialist at Dana Farber. I was on thalidomide 150 mg (no dex) for almost 3 1/2 years. During which time my M-spike almost disappeared (114 mg/dL). I want to share I added to the thalidomide a single capsule of 500 mg curcumin daily (Jarrow brand), before my M-spike really started to drop, after just two weeks.
I just switched to Revlimid 11 months ago when the thalidomide-curcumin combination stopped working. I have had no let up in the leg muscle spasms. While on thalidomide, the neurapathy in my hands and feet really never got worse than minor to the low end of moderate. But what I believed may be causing my leg pain (it is really muscle spasms) is damage to the nerves controlling the muscles.
If the Dana Farber doctor responds I will be sure to post.
Terry
Terry,
Thanks for your reply. Last night I had no porblems with leg pains. I noted a comment that Margaret made earlier about excess viscosity in her blood and thought that thickened blood could also be causing my leg pains.(FYI, I have been very diligent about making sure that I take adequate electrolytes daily, since this could also cause leg cramps, but electrolytes didn't seem to make any difference to my legs.) I've just started taking 1100 mg. of vitamin E daily to thin my blood. This is the dose my naturopath recommended based on a study done by two doctors in Canada whose names escape me now.) Bingo. Last night I didn't have one leg cramp, even though I took 50 mg. of Thalidomide. Time, of course, will tell if the vitamin E will take care of this problem. (Vitamin E will also reduce high potassium levels, if anyone has that problem. Check with your doctor before taking, of course.)
For the time being, I have stopped taking curcumin because it may interfere with the pancreatic enzymes I'm taking. (The enzymes need to be able to circulate freely in the blood to eat cancer cells. I realize that Thal may also impede the performance of the enzymes, but I've had to compromise on several fronts lately and will muddle ahead, knowing that perfection is elusive.) I took curcumin for several weeks, but didn't notice any benefits, which I needed soon in order to be physically comfortable. I'll try curcumin again, but for now, it's Dr. Kelley's pancreatic enzymes by the bushel and Thal, if I have no leg cramps, or worse. I'm very interested in hearing what Dana Farber has to say about muscle cramping, if they get back to you.
Cathy
Cathy-
" I've just started taking 1100 mg. of vitamin E
daily to thin my blood. This is the dose my naturopath recommended based on a
study done by two doctors in Canada whose names escape me now.)"
I don't take thal. but your discussion of blood viscosity reminds me of my own blood viscosity issues with my chonic blood clot. When I decided to stop taking coumadin, I began taking general enzymes, nattokinase, fish oil, and 400mg of vit. e- I am curious what a naturopath would say about my attempts to thin my blood this way (rather than taking coumadin).
David
David,
My naturopath would always try a non-drug alternative first. When I asked her how to thin my blood, I was told to take 1100 mg. of vitamin E. She didn't mention taking anything else. I'll see if she has any thoughts about controlling blood clots when I talk to her next time.
Even though I don't use Rx prescriptions unless I absolutely have to, I recently tried Coumadin for about one week at .50 mg/day. I was hard to live with during that time and stopped taking Coumadin after I could no longer walk without limping. I also had stabbing pains in my chest, which have taken two weeks to go away. (Thankfully, they did go away.)The vitamin E I'm taking has no noticeable side effects, so that seems to be a better choice for me. I've had no leg cramps since I began taking 1100 mg. of E daily about five days ago. I plan to ask my doctor for a blood test to make sure that my blood isn't becoming too thin from taking E - the same protocol they use for Coumadin.
Cathy
Dear Cathy, please keep us posted on these enzymes. I have read about them and would be very interested to know how they work for you (I hope, beautifully, of course!). Thanx!
Margaret, Florence, Italy
Margaret,
I will keep you posted about the enzymes. I've just been taking them for a short time, so I haven't noticed any side effects (other than slight nausea) or benefits. The specific protocol for the enzymes is quite rigid: You cannot take the enzymes without also doing 1-2 coffee enemas/day. The coffee-enema requirement will eliminate a lot of MMers who are squeamish about bodily functions, but the enzymes and the enemas must go hand in hand for safety reasons and for optimal results.
More later.
Cathy
Cathy, you write, "For the time being, I have stopped taking curcumin because it may interfere with the pancreatic enzymes I'm taking." Can yousay more about this please? my husband is taking pancreatin, as part of the Gerson protocol. We've also added curcumin, but I have been wondering if it is wise to mix and match too many approaches, and your comment gave me additional pause. Can you please tell me more, and suggest where Ican read about possible interactions/constradictions of taking both curcumin and enzymes at the same time? Also, where do you get your enzymes from?
Thanks,
Lisa (caretaker)
Hi, Lisa.
I get my enzymes from my naturopath. She is the one who suggested that I not take the curcumin with them, although I'm going to research this further. I don't think the pancreatin is the same thing as the enzymes I'm talking about. Since the pancreatin is part of the Gerson protocol, it's probably a good idea to keep taking it. I'm not sure about taking it with curcumin. Maybe the Gerson people can help you with that.
Cathy
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