Meaningful interval to have CRP/ESR rechecked?
Posted , 11 users are following.
So I've been up and down on an almost 4 yr. battle with PMR. The best results I've had on those tests recently were back in April, CRP 8.0, ESR 19. I had been on 4.0 mg Medrol AM and 1 mg PM, for 3 weeks at the time, after being on a lower dose but both tests got way high. Since then I had used what I tell my Rheum. is the "British reduction method" that I learned here (and have been using for 2+ yrs), and got to 3.0 mg Medrol AM and 0.5 mg. PM and I stayed at that level for about a month. Yesterday's tests were CRP 32.3, ESR 36. Today I took 4 mg AM (figuring a 25% increase) and will keep the PM at 0.5. My question is when would it be meaningful to have those labs repeated? I generally have blood drawn once a month, but I'm wondering if improvement would show up sooner.
0 likes, 11 replies
EileenH SectionedThrice
Posted
If your inflammation has risen in response to the dose being reduced you have found your end point: the lowest dose that manages the inflammation as well as the starting dose did. It doesn't mean you won't get lower - just not yet. It is time to take a rest from reducing because however slowly you reduce, you won't get lower than that dose until the activity of the autoimmune disorder underlying the PMR has reduced further.
Since you need to get that inflammation under control - why not have a few days at a higher dose to clear it out and then drop back to the dose you want to use for now? The lower dose you went was not enough to maintain where you were - even if the new one is enough to maintain, it may not clear away the accumulated inflammation. To be honest - I wouldn't reduce both doses at the same time. I would do a month with the medrol being reduced and see what happens. But equally honestly, if the April readings were the lowest you have had, I would stick at the April dose for a couple more months to see if the levels got even lower, they still were borderline, your personal level may be even lower.
I would think you should be able to see a trend in the markers in 7-10 days - you certainly don't want to see it rising any further. But this is a really low dose and slowing right down here won't cause any pred-related problems. It would be such a shame to let it flare up because you were forcing the reductions.
anne28129 EileenH
Posted
My rheumatologist has suggested I stay at 7 mg for three months and then we’ll decide the next step.
Are these symptoms normal? I was diagnosed with GCA and PMR in November last year. I’m 63 and until diagnosed was active and fit!
EileenH anne28129
Posted
Do the bad days follow a good day? If so - you are possibly doing too much on the good day and suffering payback on the following day. It isn't "normal" - nothing is "normal" in PMR - but it is quite common or usual. It is all about pacing and knowing your limits and sticking to them.
To be at 7mg after 9 months with GCA and PMR is excellent - and it sounds as if you have a fairly sensible rheumy. Most people I know have needed pred for IRO 5 years whether for PMR or GCA so this is still early days really and to have done so well this far is cheering.
anne28129 EileenH
Posted
I just want to get off the steroids and back to as normal a life as possible! Thanks
EileenH anne28129
Posted
EVERYONE wants to get off the steroids - but you will only get off them successfully when the underlying cause of the PMR/GCA has burnt out and gone into remission. You obviously haven't got your head around the fact that it is the pred that is allowing you to have as normal a life as possible in the meantime. Without the pred you would be back to the beginning as the inflammation isn't being wiped out each day and would then mount up to cause symptoms again. There is no short cut - the underlying cause of PMR and GCA takes its own time to go away. No pred - no symptom control.
Recent work has shown that on average PMR lasts 5.9 years - there is a wide range of course, some people, though not many, are able to stop pred in under 2 years but they are more likely to have a relapse at some later point. And a few of us, possibly 5%, have PMR and need a low dose of pred for life. Most people I know with GCA have taken something like 4 to 5 years to get off pred - one or two were significantly shorter but one of those went on to develop PMR 4 years later.
There is no hurry - the tortoise won the race in the end. Trying to rush the reduction will just lead to going back and once you get into a yoyo pattern with your dose it isn't unusual to find that each time it is a bit harder to get things under control.
SectionedThrice EileenH
Posted
Thanks for your response, EileenH. I've never gone up on a dose just for a few days, but I'm trying it now. I know that we are all different, but I'm wondering how many days "a few" might be, in terms of going back down without the DS reduction plan.
EileenH SectionedThrice
Posted
SectionedThrice
Posted
So I did 1 day at 4.0 mg Medrol AM, then 9 days at 6 mg, still with that 0.5 PM. I had blood drawn yesterday, CRP=16.3, ESR=23. So scores improved but not quite "normal" I must say that I can't honestly detect a difference in my body with the dose changes, so I'm not quite sure whether to stick with the higher dose until the scores improve further, or jump back to 4.0 at this point.
EileenH SectionedThrice
Posted
Difficult isn't it - is there any possible reason for the markers to have risen other than PMR?
SectionedThrice EileenH
Posted
No, not really any other infections etc if that's what you mean. It is a big improvement, but not the "normal" range I was hoping for.
EileenH SectionedThrice
Posted