That's what it feels like anyway! I have been on
remicade for about 1 year. It has been working pretty
good. But the past two times, about 10 days after the
treatment I fel like I am flaring again. And I have
never been so stiff! takes me about an hour to get
ready to shower in the morning and this I am still stiff
and sore most of the day.
When I get up from my desk I have to move very slow
and can't walk very well at first. I feel like I'm 20 years
older that I am.
Unfortunately my insurance changed a bit, and my rd
isn't taking it any more. So bummed-really liked him.
So I have an appt. to a new rd (he recommeded) but
can't get in until the end of Sept., will be about 5
weeks overdue for my remicade treatment by then
(they have me on a cancellation list..)
It feels like th RA has moved from specific joints
(hands, feet, knees and shoulders) to every joint in
my body. Even my hips are killing me. Anyone else
experienced changes like this? It seems each flare
is a little different!
Yes, when I'm flaring, it hurts everything. The only thing that helps then is to up the prednisone for a bit until they get another medicine working. That might be your solution here, a short run on the prednisone until your can get the next Remicade treatment. It may be that you need the treatments more often. When I was on Remicade, it helped so much but wore off a couple of weeks before the next treatment. It was kind of a judgement call as to whether to move them in closer. I don't see Plaquenil in your mix. That might also help if you can take it. The other thing that they might try is increaseing your MTX. It takes a bit to work, but when they are just increasing it some it doesn't take near as long as when you are first on it.
As you said, you stuck between Rheumys. But that doesn't keep them from talking to each other and deciding on something to hold you over in the meantime. I ask for something like that. Then, your new Rheumy can nail down your treatment pattern better once you get in. Make sure that all your records have been transferred over to the new doc BEFORE your appointment even if you have to hand carry them.
Call them both up, sign something to get them talking and expect them to come up with a solution. These phone calls are not billable to the insurance company so they should be willing to help you through this.
I also feel like I'm aging quickly. I think being unable to move really contributes to that feeling. It doesn't help when "friends" just claim it is old age creeping in. I really, really hate that one. Just remember that they don't have a clue. Your body is sick. It's a battle to just survive.
Hang in there and demand the best of treatment and don't settle for less than that.
That 'getting up after sitting for a while' stiffness is so annoying. My favourite example of that is when you get up after watching a movie (in a movie theatre) - aargh the stiffness! I feel like an 125 yr old woman trapped in a 40 yr old body! (You get funny looks too...)
I hope things improve for you asap.
Yep I can totally relate to that Wendy! I often find it hard toLinda it's good to hear from you. I really hope you're enjoying your trip. Don't worry about breaking any land speed records - just enjoy yourself. Hey the pace of life in Rome is slower anyway and they think Americans are crazy for not sitting and sipping coffee and enjoying the day, so you'll fit right in. Stay well!
Karen
Hi Linda....How's Rome? I am so Jealous!!!! Sounds like you are having a good time even if you are a little tired. I'd rather have RA in Rome than sitting around my house!!! Have fun and be safe.I agree with Deana. COnsidering your situation I'm sure your RD (The old one) wouldn't mind calling in a prescription for predisone. I'm sure that he's treated you long enough that he won't want to see you suffer a set back at this point. If he does refuse...call your PCP. They can give you some.
Also moving up your time between treatments could help....or even a MTX increase. Even an increase of one pill can make a big difference. I was on Humira for about 6 month before I switched to weekly. Once I moved it to weekly I didn't have that break in my relief like I did before. You do have options.
Hope things work out for you. Hang in there.
Hey Linda,don't the men in Italy pinch women's butts? Better put a sign on yours..."no pinching please" It took a lot of courage to go and I don't think I could have done it, so be proud of yourself for even packing!