Finally getting the right treatment after waiting 39 years

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Finally last month I was sent to a Rheumatologist after being bounced around to different specialists, and drs not really sure what was going on.

He was shocked that I was never seen by a rheumy for my JRA or the latest Hashimotos. So he ordered an autoimmune panel and X-ray’s of my hands.

Yesterday I got the full results. My X-ray’s came back negative for R.A. and the bloodwork showed autoimmune disease. My titer was at 1:160 but all the other tests showed negative for lupus, scleradoma, etc. Basically it’s my JRA that’s causing a lot of my grief and has been turned up by the hashimotos. He prescribed plaquenil as well as the prednisone he prescribed a couple of weeks ago.

So after 39 years of living in pain and not feeling well, I should finally start feeling better within the next few months! Talk about a long wait to get relief and have someone believe in what you’re going through isn’t in your head.

[peedin]

Congrats on getting a diagnosis and a course of treatment. Problem is there aren’t that many rheumatologists, and not all of them are good (I work in a hospital…)

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Thanks! I was diagnosed with JRA when I was a year old. They didn’t know too much about back then and I was sent to an orthopedic surgeon. Once they fixed my legs and my scoliosis they said I was cured. But my mom never told me that I have JRA until my late 20’s and I only found out because a relative asked if I was the one with JRA. Even with telling drs that I have JRA not a single one referred me to a Rheumatologist. It even shows in my pediatric records of all the times I wasn’t feeling well and how much they didn’t know about JRA when they couldn’t explain why I was feeling that way, it was in my head and told my mom there’s nothing wrong.

[islandhorsegirl]

Is the pred helping? I am coping despite the pain and fatigue, so my rheumy is hesitant to try steroids (as am I).

I’ve been on plaquenil for a few years. I didn’t think it was doing much so I tried to cut back…boy that was stupid.

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I have only taken the prednisone for a total of 5 days. It took the pain down a notch but made me feel like I had 10 shots of expresso and a whole bottle of no doze. Plus I was extremely giggly. My dose is only 10mg and I feel like a lightweight reacting to that dose.:lol:

[islandhorsegirl]

It’s awesome you can get so much out of such a small dose! My hubby had steroids before chemo and the effects were wild.

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Well I hope the small dose works with controlling the inflammation and taking away the pain more than it has.

[Magicboy]

Good luck, hope you will get some good days. Nothing like prednisone euphoria!

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Has anyone ever had bad headaches with these meds? Towards the end of the day I would get headaches that even Excedrin didn’t touch. I called my Dr and they had me stop both meds for a few days to see if I still get them. I’ve been off of the meds for 4 days now and my headaches are gone but now my back and neck hurts.

[flashwhitelock]

headache

[QUOTE=spotted draft x filly;8771895]
Has anyone ever had bad headaches with these meds? Towards the end of the day I would get headaches that even Excedrin didn’t touch. I called my Dr and they had me stop both meds for a few days to see if I still get them. I’ve been off of the meds for 4 days now and my headaches are gone but now my back and neck hurts.[/QUOTE]

Please understand, I am not a doctor but I would suggest that you look at blood sugar being affected by the prednisone which may be causing the headaches. You may need to diet like a diabetic while you are on it. Also make sure you discuss with your doctor about taking calcium while on the prednisone since it accelerates bone loss. One thing always affects another but its worth it if it solves your problem.

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Thanks but I don’t have any other symptoms of low/high glucose. I did have an elevated heart rate and blood pressure the first week I started the prednisone but it has leveled out since. The other problems I had with the prednisone is pain where I was diagnosed with bone spurs, herniated discs and osteoarthritis changes plus lingering joint pain.

[islandhorsegirl]

The only side effects I seem to have from plaquenil are hair bleaching and skin discoloration. It does seem that it can cause headaches, but I get those anyway.

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I don’t know if my headaches which started in the early evening were from one or both medications. The times I had to stop the prednisone as directed, my headache was worse. I heard back from the Dr today and they said not to take either one anymore but I don’t go back to him until October.