Another newbie...

[nosirnotme]

Hello All,

I'm glad I found this message board. I've been reading posts and can relate so much to folks here! First of all, I'd like to state that I haven't been officially diagnosed with PA, but my doctors are leaning towards PA as opposed to other types of arthritis based on my symptoms. Since most of the treatments are the same, it really does not matter that I don't have an official label yet.

I am taking methotrexate and started Remicade about two months ago. Unfortunately, I did not have any improvements with the first two infusions. With my last one (third one), they increased the dosage and I felt better for about a week. So, we're going to bump it up again for my next one.

I know this sounds bad, but it was nice to hear about other folks feeling the way I do. Not that I would wish this on anyone, but just the fact that there are others out there who understand. I have a wonderful support system. I am fortunate to have a very loving and understanding husband, great friends and my work is very flexible. I try to be strong most of the time about how I feel. There is no sense in bringing folks down with me. But, I've had a few little meltdowns. It's usually when I have to realize I can't do everything I want to do. For instance, running simple errands is difficult on some days. Other times, just taking a shower is a huge task. I feel guilty about not being able to walk our dog as much as I'd like. I'm thankful we don't have children because the guilt would eat me up of not being able to take care of them. I read here about folks taking pain meds just to clean the house. I felt better realizing I'm not the only one! I also take them so I can walk the dog. That's for me to get some exercise and to let our big dog be the social butterfly that he is and meet his buddies in the neighborhood.

I have a question for folks who have had arthritis for longer than I have. I've had it for almost a year. Does it get worse or does it get better over time? I've got it in my feet, ankles, knees, hand, neck and lower back. Then, in the last month I started having chest pain. The doctor thinks I had inflammation in the lining of my lung. A few days ago, my shoulder had inflammation as well. I couldn't even move my arm without excruciating pain. I feel like I've been down hill in the past year. I'm hoping that I'll respond well to the Remicade and will get my quality of life back. Is that a realistic expectation? Will there still be some occasional flare ups? (Hopefully not as bad as now).

Thanks so much for reading my babbling!

[RichJ]

hi nosirnotme,
sorry i can't help much but welcome to the p family. you will met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you. i think more will come through and help with your ?

have a good weekend all

richard

[JesseLou]

I would have to say I have a much milder case of PA than what you described, but still, it took at least 18 months to get my meds adjusted to a point where the treatment dampened the symptoms. Sometimes it takes trials with more than one drug combination until you hit the right one. In my experience, it is not just about meds for the chronic condition. I still have acute episodes - flares - in a joint or soft tissue, that require additional treatment. That is generally a steroid injection in the spot that is inflamed. Exercise is good too, and you can try different things - I think a stretching type of exercise, like yoga or pilates or water calisthenics are probably the best when you're having a lot of pain. It's surprising how much it helps to move.

I have stayed on the same meds for 4 1/2 years - MTX and plaquenil - and they're still working. Typically I need a steroid injection somewhere about every three months. My MTX dosage moves up and down depending on how things are going. 17.5 mg (injections) has worked really well for a long time now, and I think that's how it works with certain treatments: you have to work with your doctor to get and keep things in balance.