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New PMR patient, wondering if mornings will become pain free someday
Polymyalgia Rheumatica (PMR) | Last Active: Jun 1 11:10am | Replies (120)Comment receiving replies
I think you can be pain free on 20mg if you split the dose. 20 in the morning left me in agony at 2am! I was pain free taking the other dose as late as I could stay up. I did a 15/5 split. It did make me wake up early for a while but I didn't mind. Have coffee at 3am and start cleaning closets out, lol.
Now on 13 and still had some bad days BUT I think starting Low Dose Naltrexone has made a difference in it, just this week! I got it through a local pain clinic, and a compounding pharmacy. I live in the middle of nowhere and was very surprised that I was able to get it locally! On day four of 3mg and feeling the inflammation and pain subside daily. I'm very surprised and encouraged! It's about $50/month, insurance doesn't cover it.
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I agree, split dose worked for me too. I was only 9 days into this new diagnosis, on 20 mg of Prednisone, when I started to split. Like you, I would be startled awake with return of the pain, in every joint, at 2am. I would suffer into the morning, feeling like I did before I ever started Prednisone, then it would take 2 hrs after taking my morning dose to feel normal again. I thought, this is not right! I started researching Prednisone, learned it only stays in your system like 16hrs, learned other people on here were splitting the dose and thought, that makes sense, (like antibiotics required to be in your system around the clock to prevent breakthrough infection). I said: why don't I try that also. Two months later, I am still pain free in the night, the morning and all day. and never slept so well. I did 10/10 split, then 10/5 split, then 5/5 split. I am starting my descent to 9mg this week 5/4, although, I am considering working my way back to taking all of the 9 @ once in the am, based on what others are saying about how their Rheumatologists feel about 1x daily dose only. Plus, I am curious if the pain/inflammation is still there, the true test...the 2 am pain.
I am happy the low dose Naltrexone is working for you. That drug seems like another miracle drug like Prednisone. Although, initially intended as an antagonist to treat opioid and alcohol dependence, it was discovered to be effective in treating multiple conditons, like chronic pain syndromes, inflammation, immune system dysfunctions, anxiety, depression and so many more...that is amazing.
Everybody has to find their own peace. Everyone is different in their experiences with PMR. For me, I am on a personal quest to get off Prednisone, and any drug for that matter. I have been lucky in life so far, for being almost 70 (ouch). I am on a thyroid replacement, for life, and a med for gerd, which I am also trying to get off of, lol. That's it! And, I don't want anymore! Haha...I can only hope!
Keep us posted on how that Naltrexone works to keep the pain and inflammation away as you continue to wean your prednisone. I wonder if anyone else has experiences with Naltrexone-hmmm, that is probably in another discusion. Have a good day....