Feeling frustrated....had to go off my methotrexate because of bad liver results and went to the doctor today and she said that she wants me to try to stay off the methotrexate permanently because my blood markers are lower than they have been in the past (meaning she thinks my RA is being controlled). However, this would only leave me on plaquenil and sulfasalazine and my joints haven't gotten any better. I keep trying to tell her this, that it feels like it's moving into other joints....but she thinks that this is just pain not related to RA....that it's just cause I don't sleep well or something....I don't believe that. It feels like the exact same pain as I've had with RA in the past but she feels my joints and says that because they're not inflamed and tender and swelling, it's not a problem. I dunno.....maybe she's right. Obviously I don't want to be on drugs that I don't need....but I feel a little scared being off the mtx and only taking the two mild drugs considering this disease progresses so quickly. Anyone have any thoughts? Should I get a second opinion?
Britenny
Too bad she didn't explain it more clearly. Do you think she means that the pain isn't caused by inflammed joints but may be fibromyalgia or perpetuated by the ra? I'm trying to figure these things out myself and it sounds like pain causes a cycle of self perpetuation. I found this in some reading on centrally mediated pain today.
Many researchers, such as myself, view FMS as a central pain state which is maintained by peripheral pain generators. These pain generators include conditions such as osteoarthritis, rheumatoid arthritis, reflex sympathetic dystrophy, injuries, and just common post-exertional pain
I think it is ok to get a 2nd opinion whenever you are in doubt. But it is expensive and time consuming.
When is your next appt with rd? A month or 2 doesn't matter much off mtx. MTX takes a long time to completely leave you. Have you told your RD just as plainly as you have told your worries to us?
There is real pain when swelling goes down - all the stuff that ra 'roughed' up is now grinding around a bit (joint space narrows when not packed tight with fluid from ra inflamation). The only thing that makes 'healing' pain better for me is exercize. I can't always tell the difference by feel - but when my hand/wrist/knee/ankle swelling goes away by sight - I start very gentle exercize.
Many years ago I was told I was in remission because my sed rate was back to normal and most swelling was gone. Then the dr asked me if I believed him. I answered that I was feeling better than I was when I started treatment but I sure was not back to normal. I was just taking an NSAID... but you are taking 2 real DMARDs - You could stay OK for a long time - maybe even get much better.
Yummmmm, I think I have talked myself back into a 2nd opinion for you. Take copies of you blood work with you and ask the new RD for a 2nd opinion.
The amount of doctors that I have seen over the years regarding the joint issues is amazing. I have one doctor diagnose me then another undiagnose the RA and it goes on and on for 20 years.
Good Luck
Jane
Brit~first off the thing with your liver can turn serious. Take that serious and keep a very close eye on it.
Second, Marian is exactly right. MTX takes a long time to build up in your system...and it takes a long time to completely leave your system as well. You'll probable be ok for a while without it.
If it were me I'd just do what the doctor says and if it's like you suspect you'll be in a mess in another 8 to 12 weeks. At that time you can come back and say "SEE; WHAT DO YOU THINK OF THIS???"
On the other hand...if your doctor is right he's doing you a huge favor by getting you off a medication that in the long run could cause serious damage that I promise you, you do not want. If there's any chance that you can get by on just Plaquinel and Sulfersalizine (I've never heard of anyone taking all three anyway) it would be in your best interest to do so.
Trust me; I've been on and off this roller coaster for a long time now. You really have very little to lose at this point simply by trying it.
Good luck.
Thanks guys....I found your responses very encouraging. I think why I felt so crappy about the whole thing was because the whole doctor's visit didn't go well. My doctor had scheduled an appt for me, she was the one who had asked me to come back in a month. And then when I got there I had to wait an hour and a half and I finally started searching the halls asking people if they had seen her. She was doing work in her office and was like "oh I didn't know that you had an appt because I just saw you two weeks ago." I respond: actually no it was a month ago and I'm here because you asked me to come back. She was very nice and apologized profusely but I still felt stupid. And then when I told her about how I was feeling, and that the joint pain wasn't gone and I also had chest pain, I felt like she kind of dismissed me. In a nice way....but still......I just felt like a total hyponcondriac neurotic patient all around. It put me in such a crappy mood for the rest of the day. But I guess I should be happy not to have to take those horrible MTX injections. I will keep an eye on the liver Lovie. THanks for telling me that...I didn't realize how serious it was.
THanks for all your support guys.
Brit