Re: Questions-Cindy

[Guest guest]

,

I have been on MTX pills and injections. Both are taken once a week. The pills I had horrible side effects:vomiting, diarrhea, dizziness, headache, and one side effect that can be fatal is drug induced pneumonitis. This started with dry cough and progressed to very painful dry cough. I was finally taken off the pills and then put back on 2 months later on injections. All my side effects returned and were even worst but I added mouth sores, eye sores, throat sores and genitalia sores...basically anywhere on my body I had mucous membranes I had sores. It was horrible. I was too sick all week to do anything but lay on the bathroom floor. I was also on high doses of folic acid and leukovorin which is suppose to counter act the side effects. It did nothing for me. I finally quit taking the MTX...the side effects were far worst that any benefits which I was too sick to enjoy anyway. I would only have one decent day out of seven days and that was the day of my next dose.

Enbrel was fine. It is injectable twice a week or once a week. When I was on it I took the twice a week injections which you have to mix. I had no real problems until near the end when I started getting terrible skin reactions to it. Large painful, itchy lumps at the injection site. I was further discouraged by a friend that ended up blind in one eye after taking 13 injections of the twice a week version, which means she had taken a total of five weeks worth of injections. The cause of her blindness was a rare side effect of Enbrel called optic neuritus.

Enbrel is quite expensive too if you do not have insurance coverage..it runs around $1500 a month. Enbrel does have financial assistance for those that qualify as well as co-pay assistance for those with high co-pays.

I also took Arava daily for a year and had not problems nor side effects from it. It does require close monitoring because it can become liver toxic. So I need blood work every two weeks for quite a while and then my doc was confortable with me going to once a month labwork. I changed rheummy's and the new doc does not like Arava and stopped, which was when I was changed to MTX. Arava is quite expensive..around $100 for three month supply.

When I started I was taking Arava, prednisone, Bextra and prevacid. Later that changed to MTX, prednisone, Bextra, folic acid, leukovorin and prevacid. Then we added Enbrel. Most people are on a cocktail of drugs. Mtx is used to inhance the preformance of remicaid, enbrel and humira.

There are some other drugs as well: plaquinil and few others that I am unfamiliar with because I was allergic to them so never even discussed taking them.

Overall I think all the RA meds come with side effects and risks...you have to decide which combo is the most acceptable to you.

I am now looking at Humira....I don;t want to take it because I also have a friend just dignosised with lymphoma...she had take Enbrel for six months and was getting ready to start remicaide when she was dx'd with lymphoma....so once again they all have risks.

I think the goal here at least for me is to take the least amount of meds and get the job done...hopefully with no side effects.

I am currently changing rheummy's and being re-evaluated to see if my RA dx is even correct since my old rheummy refused to do any auto-immune lab testing on me...his reason was that because I was dx'd no need....the only problem is that he did not dx me and the doc that did left and took all the records with him...

Toni

In a message dated 4/18/05 3:35:21 P.M. Central Daylight Time, Rheumatoid Arthritis writes:

Date: Mon, 18 Apr 2005 01:24:13 -0000 From: "" <runyonc2001@...>Subject: QuestionsHi All,I'm newly diagnosed, as I mentioned in an earlier posting. I am looking for a rheumy doc in my plan and in my area. But until then, I have some questions.Can you tell me about the drugs (Humeria, Enbrel, MTX, Remicade)? What are the side effects?How often are the drugs taken? Daily? Weekly? What combination, if any are they taken in?My RA is not horrible (I say that now that the flare up has subsided!). What I mean is most of the time I can tolerate the pain. I'm afraid, though, that if I don't start some kind of treatment, it will progress. I already have trouble sleeping at night due to pain in the hips, and I can barely open jars. Some days holding my hairbrush hurts my hands so much. Would it be beneficial to start treatment now before damage to the joints get much worse? Or am I just whining too much? Thanks for your help,