I am a bit confused. My doctor is completely sure that I have early RA, not Palindromic RA, even though my symptoms are exacly that of PRA. She is not going to start me on medication until my next flare. If I do not have a flare within two months, I have a follow-up appointment November 6.
I have read that a definite dx cannot be made unless the symptoms persist at least 6 weeks, so perhaps that is why she did not prescribe anything this time. Also because, I guess, I have been feeling well since my first flare a few weeks ago. Anyone else have a similar experience in the beginning?
Nancy
No similar experience here as I guess I started out with more of a "bang". Just wanted to wish you well though as I am sure it is sill actually just as scary to have this going on even if you are feeling pretty good right now.
Good Luck!
Melly
Thanks, Melly. Yes, this is a scary time not knowing when it's going to hit me again. My RD is certain that it will, sooner rather than later.
My doc started me on MTX on the day he dx'd me. However, I was in a flare (the first one) that had been going on 4 months.
Nancy -
I'm PRA. Is everything 'back to normal' for you now? No twinges, no lurker pains, no nothing? Because that's classic PRA.
If that's true...you're asymetrical, excruciating pain that just goes away...that sounds like PRA to me. If the doc won't listen then maybe you need to find another rheumy. If, on the other hand, you can start feeling it building, you're heading into another 'attack'. Maybe if that happens, you can go in during the 'attack' and show the doc what you're going thru. That's how I was eventually diagnosed. They kept saying "this is unusual for RA" and "well, that's unusual for RA".
Pip
Hi Pip,
I was going to send you a PM today.
Yes, everything is back to normal other than mild aches and pains that I've always had and can easily live with. The attack pain was out of this world. But now, not even twinges (the EXACT word I used to describe the beginning of a joint flare-up). I am going to call her as soon as I feel a flare coming on and get in there ASAP - I want to start getting this treated early!
p.s. - I still believe I have PRA.
You go girl!
Well, let's hope it's months between attacks! But just be ready to run in. If for some reason you can't, Bonny had the brilliant idea of taking photo's of the area (assuming you swell or get redness). I had very little of that so...but at least the doc can see its' asymetrical etc.
Hugs,
Pip
Hi, I've never heard of 'waiting' for a flare! My gosh it took 3 months for Remicade, and Methotrexate to work for me after I had the worst flare you can imagine. So if you had a flare tomorrow you'd have to wait a while for the meds to help you??? Please, let me know how this all works out. Maybe you could phone and ask if/when I have a flare how long will it take for the meds to help?(prednisone was the only thing that saved me) LyndaYes Nancy - I can relate ( on behalf of my daughter).
She has been very sick and undiagnosed for 12 months -in and out of hospital.
one time we went to the childrens hospital her symptoms 'disappeared' for the 3 nights we were there - but they ran tests anyway.
The next time she had a flere for her 10 day stay - did tests, found out 'stuff' but no diagnosis.
She is ready for another med ( we currently heave taken her off naprosen as it made her constantly nauseated) - but our docs too are waiting for 'more' symptoms and a diagnosis before hitting the toxic dugs.
I understand they have to be careful - but it is so frustrating!
I hope you are well for a long time - but if not - go in and hopefully they sort you out quickly.
Maddis flares have proven fever, sever pain, general aches, inflammation 'in her bones" (?!)- but bloods all over the place - so still no diagnosis.
Sounds like they are a lot closer to your dx though - so stay positive!
Let us know how you go.
Nancy, well you can't say this dx isn't an adventure, Hi Nancy! I am experiencing similar symptoms which have been on the mild side so far. Some days I wonder if the dx was correct. Yes, I had swollen and inflamed ankles and a few joints on my hands when dx'd this June by my general doctor. Had past history of problems with sore stiff feet in the AM for at least a year prior to the swelling episode and achiness in hands and wrists for many years, even after carpel tunnel surgery on both hands. Never was enough to really complain to the doctor about since the achiness in my feet would subside after I was up and moving around for a while in the morning. Nothing has been as bad as what so many of the folks on the forum talk about. In fact, in a way, I feel silly saying I have RA. My initial blood tests were similar to yours: RF 20, SED 30. Then, when tested again recently: RF 32, SED 5. A week ago I went to the rheumy who couldn’t find any swelling…no wonder, with a SED rate of only 5! So, he ordered an anti-ccp and a PCR test. I see him Nov. 1st for the results. It will be interesting to see if he agrees with my general dr on the dx. I have to say though, that I now experience frequent achiness and stiffness in my feet, ankles, knees, hands, wrists, and elbows. But there are those times when nothing really hurts ---and then there are days that I need to take the two Celebrex 200mg. I guess we are really lucky so far. I am just wondering what it will be like 1-10 yrs from now? There aren’t many like us on the forum. Most everyone else seems to be in such agony. Is it possible to have RA only mildly?Hi lcarter! It's nice to know someone has similar symptoms. My heart breaks for the young mothers on this board who are hit so hard and must struggle with this disease, and at times I feel guilty that I am doing so well (so far, anyway!). I have read that the first year can be quite easy, though, and I, as you, wonder and worry about the future. On the other hand, there is always the possiblity that we have a mild form of RA.
I haven't had morning stiffness, but went through a period a year ago where my feet and hips stiffened up in the middle of the afternoon. I didn't think much of it back then. I have been able to continue my activities -- I work full time and walk 1/2 hour each day, then go to Curves on my way home without fail....I dread the idea of having to curtail my exercise because of pain, and worry about that all the time.
Let me know how your appointment goes next week -- I see my doctor next week as well.
Nancy