Thanks to whoever coined that phrase...appropriate in so many ways.
I finally saw the hand surgeon and had films of my upper extremities. He Dx'd the pain/inflammation on the dorsal aspect of my hand as tenosynovitis and immediately began the pitch for surgery to "scrape out the gunk in there and fuse these two bones in your wrist together". I'd like to try a more conservative approach first, thank you very much.
Saw Pulmonologist the next day and had pre-appt. PFT which showed very little change since my last one in April. Good news. She sounded rather ambivalent (though perhaps I just perceived it that way) about initiating MTX as first DMARD because of my RA-ILD, but did state that should I choose that route, she would like to monitor me more closely for changes in the lungs. She actually never did say it was ok with her. I feel kind of like a liability ball being batted between she and Rheumy right now.
Rheumy was at the convention during this time period. He was waiting for confirmation from Pulmonologist as to whether or not I could take the MTX, so, as of today, I still have no DMARD in place.
Saw PCP and she could tell that I was clearly in pain, so she strongly advised that I try a month's worth of 10mg daily pred to get the inflammation situation in control. I have now been in "The Pred Zone" for four days and each day I'm feeling more and more hyper and having great difficulty falling/staying asleep. As for my symptoms, some of my larger joints (knees, ankles, etc.) are better but my smaller hand,wrist joints have shown very little improvement. I'll be paying, later on tonight, for typing so long but just wanted to update my situation a little.
Thanks for reading.
K.
Oh! Note to PIP and Gimp: Pulmonologist states that Minocin as maintenance therapy for RA can be very "tricky" for those who also have lung involvement in that it can cause some negative, additive lung effects if taken over long periods of time. When I asked how long was long, she replied, "anything over a month". Also, when I asked Rheumy about Mino at last visit, I was surprized to hear from him that he is open and willing to accomodate some patients who want to try AP but that, in his opinion, my RA was beyond Mino.
Hi Kat. I believe it was my hubby who started that phrase, but luckily for us, the pred never made me feel the way you describe (probably too many sleepy meds cancelling it out). I am sorry you're having such trouble with it and with everything else.
Fusing the bones in the wrist together does sound awfully agressive. I hope it doesn't come to that.
And I know waiting, for mtx or any of these other darn meds, can sometimes be the hardest part. Do they at least have you on some good old-fashioned NSAID's to help out?
Hi Suzanne, I was on my own with making a decision about MXT because I have ILD. Both RD and pulmonologist laid it all out and I chose to take it and be closely monitored. After 2 years there's been no change. That could change quickly but...........
I'm sorry about the waiting game. If nothing else I've gained patience. Ask for a NSAID from your PCP, you shouldn't have to deal with that much pain. Keep us updated. Lindy
Hey Kat,
There are studies out there that you could easily find. Google at minocycline, minocin and lung ILD and you should find them. Basically, as far as I can tell, on AP you can get worse (herx and normal) and then you'll get better. Again...it's not MY lungs so you have to do the research. If it WERE my lungs...I'd do it. :-) That 'anything over a month thing' is something we tend to get from rheumies. Oh, and we'll 'get Lupus' but they neglect to tell us 1) stop the med and the Lupus goes away or 2) or switch to Doxy.
My point is - you need to do the research to feel good about these choices. And I soooo remember first being diagnosed and in too much pain to research and too afraid not too. Thank God I didn't have to do it on Pred. :-)
Also, try searching www.roadback.org about lungs etc. Bet there are a ton of posts as the SD people get a lot of lung envolvement.
Pip
i take prednisone and i am starting with my drs blessing, weaning myself from it to see if i can do without (hopefully no pain will arise) or if i still need it everyday. it makes me wanna just crawl in a hole and die. my mood swings are incredible and fierce and everyone around me walks on egg shells. not to mention i have gained so much weight i no longer fit comfortably in my fat jeans.