Has anyone tried the low dose naltrexone (Revia, Depade) treatment? I subscribe to The American Pain Foundation (www.painfoundation.org) e-newsletter and they had an article about really positive trials of this med which can be taken in super small doses. Read about it at www.medpagetoday.com/Rheumatology/Fibromyalgia/13785. Or Google "low dose naltrexone. When I asked my primary care about it (those who suffer much, know much) she looked it up & said, Let's give it a try! I haven't gotten it yet (mail-in), but I've been on celebrex & plaquenil for about four years and it helps most of the time. Nothing works for the pain if I have a flare up of the RA though. The only thing that conquers the pain for me is prednisone and my rheumatologist won't prescribe it for long term use because I'm too young (53). So I have high hopes for the LDN therapy.
I haven't heard of that particular treatment, but hope you let us know how it works for you?
I do have a comment about your rheumatologist and forgive me if I'm sticking my nose where it doesn't belong. A lot of people with RA are being treated with prednisone, either alone or as a booster for one of the DMARDs and many are much younger than you. It's quite common for rheumatologists to prescribe prednisone, as it has been proven to reduce inflammation and protect joints from permanent damage. Yes, it comes with certain side effects, but then so to all medications. You may want to talk to your rheumatologist about using it, if not permanently, then to help you through a flare.
Thanks Lene, I agree and surprisingly so does my primary care physician! I saw her on May 15 & when I told her how much pain I was having & how badly it was affecting my daily life and activities, she told me not to wait until my next scheduled visit with the rheuma, go when my next depo-medrol shot is due and tell her the same thing. My PCP said she would have no problem whatsoever with the other doctor putting me on a daily low dose of pred if it helps me that much. I was kind of surprised she didn't just do it herself ... I don't know, maybe it's a 'practicing outside of their scope of specialty' or something. Wish me luck when I go in August! And thank you for your comment & support.
Just a quick question - you're not going in until August at all? or you're getting the shot before then?
I think your PCP not giving you Prednisone is a politics thing - not stepping on someone else's turf. However, if your rheumie still won't prescribe it to you, I'd suggest going back to your PCP and asking her to (as well as a referral to another rheumatologist).
I got the depo-medrol shot from my pcp this month. She has a letter from the rheuma that I can have it every three months so I don't have to make an hour drive to her office each time. My pcp is only 5 min away. So now I can't have another one until August. I was doing so well on the plaquenil & celebrex & 'occasional' tramadol last Nov that I was told I didn't have to come back for a year. Well, then April I had the flare-up. And I was taking 3 or 4 doses of tramadol daily instead of 1 occasionally. The shot helps within the week but only lasts for about 3-4 weeks, but that's better than nothing! I think your advice is good. If she won't prescribe it in August (assuming I can wait that long...) I'll go back to my pcp and beg. It amazes me that they would rather you take pain meds instead of pred when it works so well. Very frustrating & dis-heartening. I was on it for a year when I became symptomatic and felt just wonderful - I was the normal me.
I'd suggest not waiting until August - call and ask for an earlier appointment. Your situation has changed, so why stick to the appointment schedule set when you were better? It's completely unreasonable to expect you to just suck up a flare for almost 3 months without doing something about it. Also unreasonable? Feeling like you have to beg to get proper treatment for your disease. If you're flaring and it's significantly affecting how you lead your life, you need better DMARDs to help control your disease and protect your joints from being damaged, either by increasing the dose of your current meds, supplementing with another (like Prednisone) or switching to something else altogether.
Go kick some arse!
Oh you are so right! What is wrong with me? I think they have a tendency to make us feel like big sissies when we complain. I'm calling to see if I can get an earlier appointment right now! I haven't been on that many different DMARDs so maybe some kind of change is called for. Thanks for your "What The ... ??" pep talk - Ha! you cracked me up and made my day.
Atta girl.
Don't accept that insinuation that you're a sissy. They have no idea what it's like to live with it, you do.