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I have a question for you all, I've been on 40mg/day for almost 2 weeks and I v'e been doing well with improvement each day. Now last night I go to bed feeling great and by morning I am hurting almost as bad as I was 10 days ago. I can't lift my arms, my back is killing me, and I can hardly get out of bed. Is this just part of the coarse, and it will get better again, or do I need to go see the doc again and maybe up my pred.( I was looking forward to tapering it to 30mg) Thanks for your help, as I think the people on this form know more than the doctors do.

Craigaman22008-05-07 11:06:36Hi Craig

Craig; What you describe is indeed normal for PMR and par for the course.  Symptoms wax and wane, and so you will have to adjust your dose also.  I'm on 3 years with PMR now and sometimes feel like I am finally free of pain and pred, just to wake up and can hardly move, so I wind up taking the pred until I find a dose I'm comfortable with and then start decreasing when symptoms allow.  I think you should discuss with your doctor how much and when you should start decreasing your dose just so you don't go too fast with decreasing your amount.  Best of luck to you.Thank you both for your input. I called my doc today and he wants me to stay at the 40mg/day and see if I get better over the next few days. Teedoff, as you say 40mg is already higher than the normal level to control the pmr. I went back to a percocet every 5 hours and now I am feeling a bit better. I am going to keep my fingers crossed for tonight and tomorrow AM.

Thanks again
Craig

ps I'll let you know how I do tomorrow.Craig, Hi Craig:

In my case, after 3 weeks of taking 20 mg/day of Prednisone, I have found very little reduction in morning stiffness/pain (shoulders and upper arms especially, but also lower back, hips, and thighs), but significant improvement starting about 2 hours after taking the dose.  By 4 hours, virtually all the pain and stiffness are gone, and I remain this way until I go to bed, usually around 11:00 PM.  I typically wake up a couple of times during the night, usually around 1-2 AM and again around 4 AM.  At 1-2 AM, there is increased stiffness and pain, and at 4-5 AM it is at its worst.  I generally get up between 6-6:30 AM and a long, hot shower helps quite a bit with stiffness, especially in my shoulders and arms.  Also, the degree of morning stiffness/pain varies quite a bit, and I believe may be correlated with my activities from the day or two before -- e.g. performing tasks where I use my arms a lot seems to cause an increase in morning symptoms.  Weather permitting, I try to walk 3-4 miles per day, but I don't believe this is a necessary cause of my persistent morning symptoms. Yesterday I had my first follow-up visit with my rheumatologist.  My CRP test value had decreased from 3.44 mg/DL to 2.11 mg/dL.  A set of hip x-rays she had ordered were negative.  She is puzzled that 20 mg/day of Prednisone had not completely alleviated my symptoms, and, coupled with my age (59) she is not so sure of a PMR diagnosis.  Given that my lab tests for things like ANA and RF were all negative, and that I had no muscle weakness (she was thinking polymyositis) she has ordered some other tests (aldolase, CK).  She is keeping me at 20 mg/day of Prednisone for now.  I asked her about possibly splitting up the dose, say 15 mg in the morning, 5mg in the evening, to deal with the apparent wearing off of the Prednisone.  She did not recommend it, stating that splitting up the dose would increase the likelihood of steroid-induced side effects such as Cushing's and weight gain.

From the various threads on this forum it is quite apparent that each case of PMR seems to have its own peculiarities. That is why I proposed the survey in a previous thread. I have had some interest from other groups, especially one in the UK called PMR Fighters. They sent me a copy of an article by a Professor Dasgupta who is doing research on PMR/GCA, which is quite informative.

Good luck with your treatment and I hope you see some improvement soon.
kirbycat2008-05-08 07:02:00A number of us (me included) have started off our course of prednisone by splitting the dose.  I was only at 15 mg, so I would take 10 in the a.m. and 5 in the p.m. to help alleviate the morning stiffness.  That was only for as long as was necessary (in my case, a few weeks), and the p.m. dose is the first to be reduced and eliminated.  I think as long as you aren't taking the split dose long term, it shouldn't add significantly to side effects.  Some of the people on this forum have taken the split dose at the suggestion of their rheumatologists, so it can't be an absolute "no no". Hi Ruth:

I tend to agree with you about the splitting, and may try it shortly, even though my rheumatologist was quite adamant. She seemed quite surprised that 20mg in the morning did not give me 24 hour relief, but so far it seems to wear off by about 2-3 AM, and does not kick in for a couple of hours after taking it. Because of this, the rheumatologist is not convinced I have PMR despite the obvious symptoms, lack of positive test results for other possible culprits, some positive response to Prednisone, and reduction in CRP.

The article that PMR Fighters send me contains a section on confirming factors for PMR diagnosis, one of which was responsiveness to the initial dosage level of Prednisone. The authors recommend a starting dose of 15 mg/day and consider "at least >70% patient global improvement" and reduction in inflammation markers (ESR, CRP) as a positive confirmation factor for PMR. The problem is that nowhere do the authors define what they mean by "patient global improvement". In my case, the Prednisone does not eliminate my morning pain/stiffness, but does give almost complete relief for about 16 hours after it fully kicks in. So, what does this represent on the global improvement scale? Your guess is as good as mine.

Thanks for the well wishes and best of luck to you as well.
Thanks all for your response's.I went to the do today and he too is surprised that the 40mg/day is not working all day. The only thing that has changed in my daily routine is that I have added back my Ms drug Copaxone. I quite taking it when the pmr started as the daily shot just added one more thing to ruin my day. Since the PMR had gotten so much better on the 40mg, I added it back about a week ago. The doc is only guessing, but there could be a negative effect with the strenght of the prednisone. I am going to stop the copaxone and see if the 40mg/day gets me back on track. I am currently 4 hours since I took my prednisone and have not gotten any relief, so I am going to take a percocet or go crazy. Boy if the copaxone is interferring with the prednisone, that will sure cause a new delemma.
Are you taking statins, by any chance?  If so, google "statin induced myopathy" or "statin induced polymyalgia".Hi Ruth

No unfortunately the statins had too many other side effects, so I am with the fish oil for my colesterol. Can I ask where you are up in BC. I am just south in the Seattle area. I love it up in your area.
CraigHi, Craig - Hi Ruth

It's been awhile since I've been up your way. My Grandparents and parents had a 40 foot boat and we would cruise the inside passage including my favorite place called Princess lousia inlet. We did this trip every summer for about 10 years. That was 40 years ago. Now my wife and I drive up to Vancouver just for the heck of it every few years. If you want a good laugh the last time we went up there was to get some drugs and some canadian toilets for a remodel we were doing. You can't buy the full flush one's down here anymore. The funny part was, that the customs guy said it was illegal to install those in the US and he held us for about 1 hour, until I convinced him I was just collecting these and not planning to install them. What could he say.

Hey Regarding my PMR, I didn't take my MS shot yesterday or today and now the Prednisone seems to be working all day with very little pain in the morning. If that holds true for tomorrow, I think I may be on to something. If I am still good on Monday, then I will see if someone can tell me a corelation between the Prednisone and Copaxone. It could be a clue that could help everyone.
Have a good weekend

CraigI also was one of the people who had to split dose. I am still splitting now, but differently - I only take 7 mg now - but I take 5 with breakfast and 2 with lunch. Otherwise I wake up in pain around 5 am and it takes a while to catch up with the meds.

I would recommend 20 & 20 for a few days to see how it works - breakfast and dinner.Craig,
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