Scared to move forward

By gina5595 Saturday, September 12, 2009

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Well, I've made it through my first year without punching a wall. I know it would hurt really bad anyway. LOL I just stopped taking methotrexate about three weeks ago and I am feeling the affects of not taking it. I am switching to the Remicade infusions in a couple of weeks. Although I am very happy that the insurance company has finally approved the treatment, I am worried about the side effects of the medicine. I've heard some good and some really bad. I'm a little scared. I know I am very lucky. There are lots of you out there that do not have this option and I really feel for you. I wish there were more cost effective treatments for this disease. I recently took a full time job just to get on the insurance and did not know if they would pay for the infusions or not. I was really thinking not but I sure was happy to get that letter in the mail today!

I am going to take this disease and do whatever I can to make life easier for those of us who have it. I am currently in the process of learning about non-profit organizations and would some day like to start one that would help organize assistance to people that are simply having a bad day and can't get their chores done. I thank my lucky stars on a regular basis because I have the best husband in the world who picks up the loose ends when I'm down for the count. It makes me cry to think about those that have no help doing the dishes, folding clothes, cooking or simply getting a drink of water. Some day I hope to make it easier for at least the people in my area. Any information or advise on this subject would be greatly appreciated. Also, if anyone has any words of wisdom on the Remicade I would like that also.

Slow it down!

Comments (5) | Add comment

Anonymous

9/14/09 6:45am

I have been on remicade for 3 years. It has made a world of difference in my lifestyle. I could hardly get out of the bed in the mornings and was napping all day long. I now can go biking, walking and work most of the time pain free. I have more mobility. I do start to slow down a bit when it comes close to time for the next infusion. My quality of life has improved. My husband noticed a difference after 2 weeks of the initial infusion. I still take the methotrexate which is an adjunct to remicade but I'm on the lowest dose you can take for it to be effective. Good luck!

Shelley

gina5595

9/14/09 10:08pm

Thanks for the reply. I'm curious, what exactly are the benefits of Methotrexate? I was on it for a year, 7 pills a week and thouoght it would help my joints from becoming disfigured. Recently I stopped taking it because my joints were changing on a pretty regular basis. The Rheumatologist prescribed another pill to take while waiting for the approval for the infusions called Avant I believe (not sure) and my husband did some research on it for me. He found that that was the only RA med in pill form that would help with joint disfiguration. So, I just don't know why I was on the methotrexate for so long. It did help to an extent with flare-ups but not as much as I thought it would.

I alwo have never been told anything about "my numbers" and I want to know these things, you know? I'm excited about getting a second opinion.

Ellen Galo

9/16/09 1:05pm

If you haven't read the section on this site for the Definitely, find out all you can, get your 'numbers', it can be reassuring when the numbers back up your symptoms, or if they don't, you know you have to approach a problem differently. I was on Remicade briefly, it is amazing, but I had some side effects, so I ended up a little later on Enbrel. I too had some joint damage in a very short time and have had some surgery, and probably a little more coming soon. 4 1/2 years experience on Enbrel has worked very well for me. I wasn't given MTX because my liver enzymes were high when I was diagnosed (they aren't now).

It's good to read up on the meds too, because you'll have a heads-up on possible side effects to watch. Take a look at the Lab Results area on this site:

Lab Results

http://www.healthcentral.com/rheumatoid-arthritis/tests-288101-5.html

out for.

Ellen Galo

9/16/09 1:05pm

Sorry, not sure why that happened!

Lene Andersen, Health Guide

9/17/09 3:11pm

I've had this disease for a long time and one of the most terrifying things about it is starting a new medication. Hoping that it will work and the potential for having that hope crushed makes it so scary. I haven't been on Remicade myself, but I've been on Enbrel and am now on Humira and they are my miracle drugs. They have given me back my life, have given me laughter, the ability to be there for my family, to work and have a life again.

Many people do very well on Biologics for a long time with completely manageable side effects. One of the main side effects is issues with your sinuses - you can read more on how to manage that here. As well, we will be publishing a guide to Biologics in the near future you can download or print out that may be helpful to you, so keep an eye out for that.

I hope it works out for you. Please let us know how it goes?

Scared to move forward

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