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RA meds
Angela53510
Saturday, June 06, 2009 at 04:39 PM -
Untitled Comment
Lene Andersen
Tuesday, June 09, 2009 at 07:59 PMI'm so sorry you're having such a rough time.
To be honest, I would suggest getting a second opinion, possibly from someone who works at a teaching hospital. A different doctor may be able to present a different viewpoint and although it sounds as if your disease is very resistant to being suppressed, it could be that there's someone out there who might have a different take on it. However, if you're comfortable with your present rheumatologist, I would recommend going back and saying you're willing to do anything, including some of the new Biologics (like Simponi) that have just been released on the market. You may also ask if there's any drug trials you could participate in, although as you said, that may carry the risk of being in the placebo group.
All drugs have side effects and what I call the big drugs have bigger risks. However, when you have a big problem, sometimes you need a big solution and you have to ask yourself what is it worth to possibly get your life back? Yes, some people get very serious side effects the big drugs, but there are also a lot of people who manage very well with manageable side effects.
Good luck. Please let us know how you do.
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another alternative helps some - antibiotic protocol for RA
Ellen
Tuesday, June 23, 2009 at 03:38 PMFor some people that nothing else has worked for, antibiotic therapy has sometimes proven helpful. It's not always on the rheumatologist's radar these days, because of the powerful DMARDS and biologics that have taken center stage. But you may wish to check out www.roadback.org that has information, or one of the books related such as The New Arthritis Breakthrough. The antibiotics are given low dose, usually not every day, over a long period of time, and the couple of people I have talked with who are on it say they improve slowly but steadily on a variety of levels. The antibiotics have an antiinflammatory effect. There is some evidence that autoimmune diseases may be caused by cell-wall-deficient bacteria that get inside our immune cells and re-program them - hence, the "attack against your own body". They are not affected by the antibiotics that attack the cell wall (because they have none) and can only be helped by antiobiotics that work in a certain way, like minocycline (the tetracyline family in general). They are given low dose, sometimes every other day, so that the bacteria do not develop resistance to them, kind of 'under the radar screen'.
Hope this will provide another option for you to check out. Not all rheumatologists are willing to go this route. You may have to get a referral from someone else who is doing it, or from the website mentioned above (or there's another one called "The Marshall Protocol" which is similar in principle.)
Keep in touch, I'd like to know if you go this route and if it helps you.
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Have you ever tried Kineret? It has worked very well for me. It isn't usually prescribed, and it is a hassle because it is a daily needle. You sound like you must have a quite severe case, if the combination of meds you are on isn't working.
Have you looked into your diet? I gained 80 lbs on prednisone, too. I took it for both the RA and I used to have severe asthma. As I posted elsewhere, I finally realized through a nurse friend, that it was the salt I was craving. I was eating pounds of pistachios, to get the salt that the body demands when you are on prednisone. Something metabolic to do with forcing the drug into the cells by water retension, to promote anti-inflammation. So look closely at whether you are eating salty foods, esp. between meals. Usually they have high fat content (chips, nuts, etc) and that is a big weight gainer. In the last days I was on prednisone, I started eating the salt straight. Then I didn't gain the weight. It seems gross, just putting in your hand and eating it, but it really worked.
Of course, now I have somehow developed high blood pressure, so I am not allowed salt. That is after three years of working out 6 days a weeks and losing 80 pounds. My heart is fine, but something isn't working properly. So I totally avoid prednisone. You might want to try a NSAID, like Naproxyn. You can also damage your adrenal gland by long term prednisione use, and end up not being able to get off the drug (I have a cousin this happened to). I would stay away from Celebrex and Vioxx, because my father got heart damage from them. They were even taken off the market for a while, because the pharmacetical companies had presented incomplete data to the FDA, not showing that they did cause heart issues.
I have had RA for 10 years now, and other than having surgery on my very deformed foot, I am doing well. I take handfuls of vitamins and minerals every day, which I believe have helped control my auto-imune system. I also used to get constant bronchitis, pneumonia and colds, and that has stopped with the supplements. I exercise a lot, but if you are having flares, you should be very careful NOT to exercise the inflamed joints. Joint protection is essential, I have learned from sad experience.
I am also a Christian, and believe that God has really helped and directed me, as well as helping me cope with the depression and emotional toll this disease seems to bring. My faith is the starting and ending point for all I do.
Anyway, I will pray you will find some relief from the agony, exhaustion, and pain of this disease. One thing I have learned, is that God is in control, and whatever happens, He is helping me develop into a better person - kinder, more patient, and loving. My goal is not to develop into a bitter angry person, and blame life and God for the suffering this disease has caused.
So I hope you will seriously consider getting off prednisone, and you can lose weight, in spite of the pain, and somehow emerge a victor, in spite of these overwhelming circumstances.
Angie