RD visit- finally success!

Well every picture tells a story apparently.

Finally wised up and took some pictures during a flare and brought them with me to my visit.
Historically I am always well when I go in every 3 months but come armed with a description of what's been going and on and then one time I chronicled a month worth of symptoms plus daily drawings of a persons body with the joints marked off that were bothersome on each day and he would proclaim me well and remind me of how bad I was at the onset of what he had said was RA but then started calling a "rheumatic episode" (It was 2 years long) I never tested positive for RF but from visuals and the improvement with 40 mgs prednisone and MTX that was what he called it. It was very severe but got very mild and I even went off MTX.

He never took me seriously from that day forward.

So today I brought a log I kept since the 1st of Nov. and I was telling him that my hands had been flaring every few days to the point where I couldn't close them into a fist and very painful and he was unfazed. Of course I'm the picture of health today....I said I have some pictures if you care to see them. When I showed him he was like- wow you did have some swelling there didn't you? I'm glad you brought these. He wrote me a prescrip for 10 mgs prednisone per day . He is now calling it palindromic rheumatism and says wait for the next flare before I start but if it doesn't improve I may need to go back on a DMARD. he also wants to follow up in 2 months instead of 3.

This has been the worst I've felt in a long time and it seems to have been triggered by extreme stress just like my onset was.

This is the first time in 4 years that I have come away from his office without feeling like a fraud. I should have taken pictures long ago....

Thanks for the link Bad. I have heard of it but it was good to read more info.
I don't know- in my heart of hearts I believe I have seronegative RA. RD says only 10% of RA sufferers are seronegative. So what? I'm often the odd lot out :)

How are you feeling lately?

Good for you with those picture! Way to go, now hopefully you can get on a medicine that will give you relief and back into remission.
Your not alone in having the sero negative, but my inflammation is very visible when I'm on mtx I have skinny knees, when I'm off it you can see the swelling in my knee ...my inflammation also shows up on my mri's...
Maybe look into getting mri's done...
So glad you had a good RD visit and keep taking pictures so as you will know when your in remission...
Many well wishes
And congrats on the doctor visit victory.....
Very good..

Hi everyone, well I did the same thing and took pic's of my swollen hands and then my swollen foot, I have been off of all ra drugs due to somehow I got Hepatitis B now, so I'm going back to RA doctor Jan. 5, 2015 and hope I can get something done. This pain is for the birds because of my Hep B I can't take much med's I hope I can find something out there to help this pain. Thanks Vickie

Here I sit with a filled scrip for prednisone and another hand flare but am reluctant to take it....

Hey weary, did you take the prednisone for your flare. I have to up mine on occasion for flares and it usually knocks them right down. I also had a negative test for RA and it took a long time to get treatment due to test results. I don't remember the type of test my rheumatologist finally used to get the dx, but it was Birnbaum in San Francisco that I saw.
Beth

Stress is ALWAYS my trigger. Hope you can get to a better place and find some relief. Best wishes.
Beth

Hi weary,
I would suggest at this point you talk to your family dr or rheumy about getting some relief with some sort of meds. Have you thought about plaquinil or methotrexate? My dr finally convinced me that these were preferable to prednisone, though they come with their own SE's and risks, as they all do. MY RA was so severe that when I finally got a dx, I was in so much pain I didn't want to live. I could barely walk, couldn't work and had already developed joint damage in my knees. Now I am on Enbril, methotrexate and low, low dosage of prednisone and I have regained an almost normal life. I Zumba almost every day, work, and enjoy activities with my grandkids! The risks I take with the meds were worth it for me, but it is a personal decision and you should weigh your options carefully. If you are in an area where you can get a second opinion and have good insurance, I'd recommend pursuing your options for relief. For over-the-counter relief I've found nothing works as well as aleve. Good luck with whatever path you choose and let me know how it works out for you. Best wishes in 2015!
Beth

Hi Weary,
Once I got the dx and tried all the traditional meds with little relief like you, I got on Humira. Took a year to get on Humira after initial dx. I had almost instant turn around. Needed ortho surgery on my knee to clean out arthritis, and had some other surgeries for carpal tunnel and shoulder injury, but mostly doing great. It's been at least ten years, but a few years ago Humira stopped working as well so I went on Enbril. It has worked as well, but I had to add methotrexate to get there. So far I have had zero side effects, and it has actually reversed my joint damage. The only real drawback is the cost of co-pay when my assistance runs out, because my insurance only partially covers these drugs. I rarely see my Rheumy, and my regular dr is a P.A. At this point in my life I really needed to be able to function at a high level as I have a job, a seven year old granddaughter who is with me a lot and my husband has terminal prostrate cancer (I lurk in that forum a lot!)
Hope you can find something good to work for you too, whatever that may be! If you have any questions about my experience with this dastardly disease, please don't hesitate to ask. My email is also visible. Good luck!
Beth

Hi Weary,
How do you feel about the TNF blockers. I know the side effects are scarey, but the potential of side effects vs having a normal lifestyle did it for me.
Beth

Glad it's helping. Hope it gets better quickly.

I'm taking just 10 mgs a day...however I remember still having side effects on that dose and that it was very hard to taper from that point on. I was only able to taper 1 mg every 4-6 weeks without increased pain.

This is probably different because I'm not starting on and continuing a high dose for a long period of time.

Is this considered a low enough dose to stay on long term?

I have been on anywhere from 5 to 10 mg for 10 years, but my Dr wants me to keep it as close to 5as possible. Can't seem to get below 7 without a flare. My side effects have been minimal. Thin skin. (Literally, not figuratively, lol). But I'm also on Enbril and methotrexate. Just went to doc and my blood panel showed all is well.
Beth