Pounding heart can also be due to anemia. I get it when my hemoglobin drops below 10. The heart has to work harder to oxygenate the body because the blood is carrying less oxygen.
It can also be from a mineral deficiency. Pred depletes magnesium, often causing cramps and pounding heart.
Boomer, are you on an acid-blocker along with the pred? If not, that may be the cause of your vomiting/nausea. Pred is extremely hard on the gut lining, so you must take an acid-blocker to protect it.
Those symtoms don't sound good. Mabey Imuran is not the drug for you. I was on Imuran at first and developed a severe reaction( nausea, chest/back pain, fever, joint pain worsening Wg). They switched me to Cellcept, it works great. So far.
What part of the country are you from?
Having the testimony of other weggies, regardless of where they live, for one drug or another that may not have common usage or governmental approval (for cost or lack of studies, non-conventional use for WG, whatever barrier they put up) is, indeed a great help for all. It is misplaced nationalism, I think, for one western government not to accept the test data on file with another if that shortcut means quicker introduction of an efficacious tool to deal with difficult diseases like WG, where there are fewer therapies available, and a greater need to control the disease as fast as possible than most other diseases. I for one am happy to find out the course I took, while successful, may one day be limited to weggies with extremely difficult cases, not pretty much everyone who has it- Cytoxan and Prednisone! As Jack noted elsewhere, the Cytoxan intake accumulates to a point where you can't have it anymore.
Last edited by Doug; 01-02-2010 at 11:13 AM.
I have just stumbled upon a paper written by a team at the hospital I attend about the treatment of Wegener's with Rituximab, it is dated 2004 and details a trial they ran. This gives me hope that if I ever need it, the knowledge is readily available to the people who treat me.
Jack, I would think they would accept research from vasculitis specialists in other countries. There are so few Wegs specialists worldwide--they're all aware of what the others are doing. My JHU Wegs doc discussed studies done in Europe.
It is just nice to know that the team treating me are the ones involved in these studies. There is nothing quite like first hand experience.
By the way, the subject of their research was in much worse shape than anyone on this forum! I guess they chose him because he had reached the end of the road, but it made sobering reading.
The Rituximab worked for him!
Many of the rtx studies have tested been on refractory (ie non-responsive to treatment) Weggies. That's actually the category I fall into. Ctx destroys too much bone marrow and doesn't control the Wegs, and I'm allergic to mtx (which isn't strong enough to deal with lung hemorrhage anyway). Rtx has great success in refractory Wegs.
My nephrologist, who is a WG guy, told me that the trick with rtx is knowing when to tail off the steroids. They don’t have the track record yet like they do with ctx. So it will be a bit of trial and error with me.
Vasculitis Foundation medical consultants provide advice by telephone or e-mail to physicians who treat patients with Vasculitis.
If you don’t have a Wegener’s doctor, please click the link and contact one or Sangye will be very upset! http://www.vasculitisfoundation.org/node/44
Yes, that's a good point. They have a standard steroid-taper plan that they follow with ctx, but not yet with rtx. Rtx works so differently from ctx. And rtx generally requires more than one round (month) of treatments spaced 6 months apart-- totally different than ctx. Rtx is referred to as a "steroid-sparing" drug, meaning they can get people to much lower doses or completely off it altogether and still maintain remission. It'll be interesting to see how it turns out. Thanks for being one of the pioneers, Gary!
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