My experiences.

[Guest guest]

Here's some experience with medication from the flip side of the coin...

I've been on and off DMARDS for ten years. I don't honestly think I could remember every single one my pediatric rheumatologist tried me on, or for how long... he seemed to care more about immediately starting patients on the latest treatments as they became available, so that he could remain on the cutting edge of his field. Regardless of whether I'd only been trying the previous "latest treatment" for a couple months.

At various times I was on MTX oral, Cyclosporine, Imuran, MTX injectable, gold, Cytoxin, and Enbrel... the past couple of years (new doctor) I've also done Humira and Remicade.

I never responded well to any of the treatments. The only thing that legitimately helped was prednisone, and I've explained before with much bitterness what it ended up doing to me.

I had a shoulder replacement back in January, and because of that I had to halt the Remicade infusions for a while. And now... to be honest I don't have the will to start up again. I've been off MTX for several months and I don't think wild terriers could drag me back to that stuff. I feel 100 % better now that it's finally out of my system. I'm not so queasy nauseated all the time. I can eat food! Real food that tastes good and has salt and sugar and white flour and red meat. I don't have to struggle to force down that nasty Ensure crap to keep my weight in triple digits. I have double the energy and I'm not sleeping 12 hours a night and napping in the afternoons. I didn't realize what MTX had been doing to me until I stopped taking it. I'm not DYING anymore... because it's important to remember that MTX is chemotherapy and its purpose is to kill. KILL KILL KILL! If you're lucky it kills your disease more quickly than it kills you, so you feel better, but do not forget that it is killing you at the same time.

I've been taking between 15 and 25mg of prednisone every day for the past ten years or longer. I began tapering it in February, and I've been at 8mg for months now. Sometimes I lose my strength and take more, and sometimes I grit my teeth and take less, but 8mg or thereabouts is my baseline "normal" dose now.

I had been taking Bextra for some time, but now I've switched to Mobic after COX-2s were entirely removed from the market. I don't notice much of a difference. Sometimes I forget my dose and I barely notice that. I may stop taking it entirely to see if it makes any difference in my daily pain, and I don't really think it will. That's one less medication!

My rheumatologist recently sent me to a pain management clinic where the doctors specialize in treatment of PAIN and not the diseases that cause it. I don't have to take Vicodin anymore. Now I have something called a Duragesic fentadyl patch -- it's similar to the patches used by people to quit smoking, only these are slow time-release narcotic patches instead of nicotine. I know logically that I'm receiving the same amount of pain medication I was before, but it somehow FEELS better to me because I don't have to take any pills or keep track of doses or refills or remember to bring medication with me when I leave the house. I just slap the patch on and completely forget about it.

So... in the past couple of months I've gone from MTX doses every week and Remicade infusions every month and 25mg prednisone and Bextra and several Vicodin every day... down to 8mg prednisone. That's it. I take my four little pills once at night and once in the morning and that's it. I feel a thousand times better and healthier and hungrier. I'm finally going to begin Tai Chi classes next week, something I've wanted to do for a long time but was never able to.

My little story just goes to show how different people are. For a lot of you, the heavy medication I used to take is a lifesaver, and it's the only thing that allows you to function and live your life without debilitating pain. But for me it was the CAUSE of a lot of my pain and misery, and I feel so much better now that I'm not poisoning my body with artificial toxins. I also know that for a lot of you, avoiding salt and sugar and meat and any other food that provides any kind of pleasure whatsoever has controlled your pain better than prednisone ever could. For me, my diet was actually a large contributor to my fatigue and nausea and gastrointestinal problems, and my constant battle to keep on enough weight to be healthy. I basically wasn't eating... the MTX made me sick all the time and I was keeping the Chinese restaurant in business by ordering quantities of tofu vegetable soup because it's the only thing that stayed down. A couple weeks after I quit the chemotherapy drugs, I was able to eat lamb chops and French fries and fettucine alfredo again, and the sudden influx of nutrition in turn has made me feel much healthier and more energetic as I lose that "sickly pallor" of the Nausea Diet.

I don't know what makes one person different from another. Sometimes it makes me despair for us, because everyone is always trying to push the treatments (or lack thereof) that helped YOU, and those same things might make ME even sicker.

The only advice I can give everyone is to try everything you hear about, but at the same time, don't listen to people who say it always works or it never works. Beware of the "scientific studies" people send you to look at... if I'm convinced Shark Cartilage is a miracle cure, do you really think I will cite fair and unbiased studies that don't prove my agenda? Nope. I'm going to show you the 1 study out of 50,000 that was contracted by the Shark Hunters Association of Iceland, which somehow mysteriously PROVES that people taking cartilage tablets daily show great improvement. For every study someone sends me about how eating only Kleenex and fiberboard (the pressed kind; you should never eat the glued kind because there's a slight chance that might taste good) will halt the body's production of poisonous chemicals, I can cite a baker's dozen studies that show the benefits of a balanced diet including red meats and sugars.

But does that mean the shark cartilage never works? Does that mean the Kleenex diet never works? No. It means they don't always work, and they're not really any more likely to work than MTX or Remicade, two more common treatments that also don't always work. This disease is a crapshoot. If something worked for everyone -- if something worked for MOST people, or even HALF the people, rheumatoid arthritis wouldn't be the hell that it is. Chances are that new treatment that Sally Jane on this list swears gave her back her life... will only make you miserable. But you should try it anyway, because what if it works? You haven't lost anything by trying (unless it's the "NO" diet in which case you might be happier just shooting yourself) and you may have found something that will produce miracles for you where everything else failed.

I'll get off my soap box now.

love to all,

Jenni