Early days with PMR and frustrated
Posted , 12 users are following.
Hello all,
I just found this wonderful resource and suspect that I may find more helpful information here than I've been receiving from my GP to date. I'm in Canada where our public health system deals very efficiently with major trauma and life-threatening illness, a condition like PMR, not so much.
Classic PMR symptoms came on suddenly 4 weeks ago - bilateral, proximal pain and stiffness early am, diminishing during the day, CRP the only out of range blood test marker.
I've only been told it appears to be PMR but no definite diagnosis.
For some inexplicable reason I haven't been able to get an appointment with a rheumatologist so far.
Still hopeful.
I was prescribed 20 mg prednisone 21 days ago. I take it with breakfast but suffer pain and discomfort, going from 8-9/10 pain to about 2/10 by around 4-5 hours later.
Today was almost unbearable. I stayed up very late last night, feeling pretty good, but then couldn't sleep as the pain on lying down was too severe. I drifted on and off sleep for about 3 hours, sitting up.
Trying to get up and moving was near impossible because of severe pain and stiffness. Even walking at a slow painful shuffle was almost impossible as was getting dressed (forget trying to pull on socks).
I don't expect diagnostic advice here but I do have a question about dosing from the experience of others.
I'm fearful of a repeat of this day tomorrow, so I'm considering taking prednisone this evening at bed time.
I have read that there is some wisdom to not taking one dose only in the am, the time when flares are raging.
I did try and split my dose once before with no improvement - 10 mg am, 10 mg evening.
So I'm thinking of taking 20 mg + 10 mg, not sure which dose when, but I keep reading that "playing" with dosing should only be done under the care of a rheumy. However, if I have no appointment date in sight, I would take a chance to deal with the debilitating pain.
Can anyone offer any anecdotal experience?
Thanks!
0 likes, 5 replies
EileenH jack1949
Posted
"I stayed up very late last night, feeling pretty good, but then couldn't sleep as the pain on lying down was too severe. I drifted on and off sleep for about 3 hours, sitting up."
Can you tell us some times - when did the pain return? Did it ever go away? Where is it - anywhere specific?
If it were me I would try 15mg in the morning and 5mg about an hour or two before you expect the pain to return. That may work - and take the first 5mg tonight, don't wait until tomorrow, if you try it.
The antiinflammatory effect of pred lasts for 12-36 hours depending on the person so if you are the 12 hour end the pain will return before the next dose is due. And YOU have to do your bit - the pred only mops up the inflammation, the actual disease is still going on in the background and leaves your muscles intolerant of acute exercise. For the moment: REST!!
There is another forum at HealthUnlocked - with quite a few Canadians. Most of them have problems with rheumatologists - can't get one or they aren't ideal!!
Harrie4 jack1949
Posted
Having read the linked piece, I'd suggest that you start your night time dosing tonight with 15 mg at bedtime and 10 mg with breakfast tomorrow. See if that helps after a day or two. I'm a bit worried that your symptoms werent controlled with 15 - 20 mg no matter when administered. Not that I know what I'm talking about. I'm not a doc, just a 3.5 year veteran of this little, um, gift? I'm also Canadian and my experience is that a good GP is the key. He or she will facilitate your access to the rheumatologist of your choice -- ask around or start with a ranking site. If you're in a university town, see if they have a dedicated arthritis teaching/research centre.
You can find a good rheumatologist but your GP -- at least in my experience -- is the lifeline to resources. Good luck....stay positive and advocate for yrself the way you'd advocate for your dearest friend. I'm grateful for the health care here in Ont, but it's still a system and systems have to be navigated....I'm sure you know what I mean. 😃
Anhaga jack1949
Posted
Because your symptoms aren't being controlled by the recommended starting dose of pred I think you do need a referral. It may not be PMR as we know it at all, it may be another disease which manifests with PMR symptoms and your doctor should have run some tests to eliminate other possibilities. Try googling polymyalgia differential diagnosis.
On the other hand, pred doesn't cure anything and you do need to do your part. You have a serious systemic disease and need to treat yourself kindly, get enough rest, eat healthy, exercise in moderation, all that boring advice....
All the best. Do keep in touch and let us know how you get on.
Btw I'm in Canada also, NS, and have only ever been treated by a GP - but I had the miracle total relief of symptoms very quickly, although had been undiagnosed, untreated, for over a year previously.
nick67069 jack1949
Posted
The best timing/dose for medication is very individual thing. There are basically two factors to pay attention to.
One is that body releases cytokines about 4-4:30AM and they cause inflammation and ultimately muscle pain. You have to take your main dose as close as possible to that time; either first thing in the morning or sometimes after midnight (1-2AM is ideal, since it takes 2 hours for prednisone to achieve max concentration).
Second factor Eileen explained already. "antiinflammatory effect of pred lasts for 12-36 hours", so depending how YOU react to prednisone, you may be happy with one dose or you have to take split dose to cover 24hrs.
For me I took larger dose at 1-2AM and second dose with breakfast. As my dose become smaller, I only take it at night.
Hope this helps.
jack1949
Posted
Thanks all for the very helpful suggestions!
Eileen - my pain/stiffness returns early am - 5-6 am. It may strike earlier but if not too bad and if I'm asleep I'm unaware. Nick - yes I read about peak pain time at around 4 am. so I think I will try a split dose. I'll take I'll take 5 mg around 2 am, then 15 mg at 10 am with breakfast. If that doesn't change things, I'll swap those doses/times. At this point, since I've not been able to get to a rheumy, I'm afraid to go above 20 mg/day.
I'll report on how or if this changes my morning pain/stiffness. Again, thank you sincerely for all the selfless advice!