Mystery Solved!

[Trinket]

So for any that recall ![](y recent health issues, the mystery is now solved…Mostly.

Three weeks ago I had a Rheumatologist appointment with a new Rheumatologist (My previous seemed to fluff me off, and even said “Are you sure you had swelling, and it just didn’t “feeeeeel” like you had swelling?”… Helpful!

New Rheumy took a long history, and actually did a physical exam, in which he pointed out my knuckles were mildly swollen. He looked up past bloodwork. We’d never properly ruled out Rheumatoid Arthritis. I had still convinced myself it wasn’t that, just Sjogren’s with odd presentation (Joint swelling isn’t common, but joint pain is!)

Bloodwork had come back shortly after the initial visit: Positive Anti-CCP test. He was away though, and just got back.

He called me yesterday, and got a somewhat concerned me on the phone, to let him know that my knuckles now hurt, and were no longer “mildly” swollen! Both hands (Knuckles and thumbs)! My wrists, elbows, shoulders and ankles had also ALL joined the mildly swollen (but very painful) party. It was no longer one joint here and there…

I see him Monday now, with instruction to take my Bursitis medication (Strong NSAID, in a large dose) until then.

I have Rheumatoid Arthritis. I’m not happy. :no: Let the battle with my own body begin!!!
[IMG]http://i68.tinypic.com/16lbtq9.jpg)

For anyone else who has POTS, don’t let the doctors tell you to just live with it because it has “no known cause” IT DOES, at least in most cases.

We caught it quick, that counts for something, right?! Needless to say that for the past 2 weeks I’ve been useless. My fingers get stuck, and don’t move the way I want them too.
Boyfriend is concerned (The only good thing about that is he’s been pampering me! It’s nice, and also horrible!).
My mom thinks you just take meds and you get better, I’m not sure what to tell her… :no:

[RPM]

My mom thinks you just take meds and you get better, I’m not sure what to tell her…

Well, that is the way it should work … :no: :sigh:

[Trinket]

[QUOTE=RPM;8402687]
Well, that is the way it should work … :no: :sigh:[/QUOTE]
We can hope it will work like that for a while! Feeling better today, with talk of treatment with the doctor.

Starting on Plaquenil with regular eye exams and bloodwork (He wanted something stronger, but was afraid of my already prone-to-infection self! Says when the Plaquenil doesn’t cut it anymore, we move to stronger ones).

Also got a cortisone shot (systemic, with 14 swollen joints, too many to target!), which he’ll repeat as needed to keep inflammation at bay.

I won’t “get better” per-say, we’ll keep it to a manageable and tolerable number of side-effects. But right now, it’s better than nothing.

I see him again in 4 weeks, but the Plaquenil could take a couple months to get the full effect.
I just hope that with treatment, I’ll be able to function better! Get back to hiking and riding and crafting and working hard! I’m sick of my house and my recliner, it is now an evil place to be! Haha

[Magicboy]

Wishing you the best with this challenge. Sounds like you’ve got a good doc and that is really important

[cayuse]

Hope you find some relief with the plaquinel and are able to get back to enjoying life.

[BigEq]

Sorry to hear I was diagnosed with lupus a little over a year ago after going to see the doctor for swollen joints - including my hands! The Plaquenil took about 3-4 months before I noticed a difference, but my rheum said it could take up to 6. Hopefully you’ll get some relief sooner rather than later! I ordered gloves from Back on Track and sleep with them on, which helps loosen my hands up a lot. I also have the Back on Track mini-blanket that I use on knees, ankles, back, etc, but I’ve mostly noticed a huge difference from the gloves. Feel free to PM me if you have any questions or anything, I’d be happy to help or just be an ear

[PalominoMorgan]

Feel better soon I hope. I have POTS, EDS, and so much else. No formal RA dx but I had a MAJOR joint pain and got almost instant relief from Mobic (aka meloxicam). Within 36 hours the pain in feet, ankles, and knees eased significantly.

Weird thing too is I get periods of MAJOR hand pain. I was ready to cut my thumb off a month or so ago. Went to Ortho after a week and was told X-ray only showed some arthritis and osteoarthritis. The WEIRD THING that helped was generic BenGay. The smelly kind. I rubbed some on my thumb and within 10 minutes I didn’t want to saw it off. This was after a week of maxing out pain meds!

So, maybe give the old fashioned BenGay a shot? I know I process meds oddly so YMMV but it can’t really hurt, right?

[nhhaflngr]

I have been on Plaquenil for about 7 years for lupus symptoms and it has helped enormously for swollen joints and swollen lymph glands. So far, so good, but I dread the day that it stops and I have to move on to something stronger. Hope it is helping you!

[Trinket]

@PalominoMorgan: EDS is a common cause of POTS, and is very painful I hear, so sorry you deal with that! Sadly the meloxicam provided no significant relief (waited weeks for it), high-dose naproxen works slightly better, so I’ve been using that instead, and percocet for the very bad nights.
Bengay gives me migraines and hives, so that’s a nope haha!

@nhhaflngr: Sadly the Plaquenil didn’t work out (Gave me a pretty bad delayed-reaction hives), and we tried injection of Methotrexate as the next step (0.8ml), and waited 8 weeks, sadly this failed too (Swelling got worse, and ESR went up 20 points in a month) and now we’re trying 1ml injection.
If that fails in mid-April then he said he was going to try adding Arava to the mix.

Worst part is waiting (I’ve never been a super patient person, ha!), and hoping that THIS one will work (And then being disappointing that it failed). But keeping positive! Just want to get some semblance of function back, as right now I’m watching my very swollen fingers slowly warp and bend, and I drop everything I try to lift! My other joints are getting pretty bad too, pain-wise.
Must wait, and hope!

[AKB]

It seems like you are having to wait a long time for relief. Have you thought about a second opinion from a University rheumatologist. Ask your rheumatologist to give you 3 names of RA gurus for a second opinion. Pick one, or pick someone else.

[Trinket]

[QUOTE=AKB;8555208]
It seems like you are having to wait a long time for relief. Have you thought about a second opinion from a University rheumatologist. Ask your rheumatologist to give you 3 names of RA gurus for a second opinion. Pick one, or pick someone else.[/QUOTE]
It is a wait, but that’s just how it goes with all RA, the meds take a long time to take effect! MTX you should notice something by 8 weeks, but full affect can take 6 months. Plaquenil you start to notice around 4 months, full affect in 6-8 months.

It’s a process, and he is the top in my area (there is one other guy, but based on reviews, he’s NOT a personable doctor haha!).

I could drive and see others, but the process would remain the same, try a medication (or increase) and wait and hope. Judging by how quickly he’s taking action (going to Arava if MTX still shows no affect), I know he’s taking it seriously!

The other factor in the wait-game is Canadian Government and my Finances, you cannot just start on a biologic and have the government pay for it, not happening. Have to fail multiple DMARDs before they’ll consider it (Rheumy has to write a long letter to apply), unless I was able to eat the cost for it (Nooooooo waaaaaaay, so much $$$$~!)

I think it’s all going pretty fast considering this, I just hate ANY wait. My wish is to have meds work within a week, that’d be super! But not realistic haha!