Not sure if pain and stiffness indicates inflammation
Posted , 13 users are following.
Hi everyone, I am so glad to have found this site, so much great information and wonderful support! Thanks
I am learning a lot through you all, and my question is, does pain and stiffness indicate inflammation? I have polymyalgia and am on 10mg prednisone, have been on that dose since the 6th January this year, my Doc has O.Ked me to taper 1mg every 4 weeks, but after reading your stories I want to try the DSNS method.
I see the the word flare up in your discussions and want to know what that means please? Could it be pain where previously there was none?
Would it be O.K to cut down even if pain is increased?
Should my Doc check for inflammation?
Should my Doc check bone density?
Any help appreciated.
Shouls my Doc also check bone density?
1 like, 11 replies
arlene85779 margot34956
Posted
margot34956 arlene85779
Posted
Thank you Arlene, that has helped. I am not sure about my doc now though, because she hasn't wanted to check my levels, just told me I can begin tapering although I still have pain.
I rang the clinic today and asked for the Crp test. I will decide on tapering once I have the result.
I have not been told about the bone density test by my Doc, she has not suggested it.
I did start on 15mg in December 2017.
Thanks for your help. I hope you are doing well!
EileenH margot34956
Posted
A flare is a return of symptoms the same as the original PMR symptoms - though sometimes they may be a bit different and take you by surprise!
The pred is removing the new inflammation that is created each morning when a new batch of inflammatory substances is shed in the body - that continues as long as the cause of the symptoms we call PMR, an underlying autoimmune disorder, is active. The pred has no effect on that at all, it carries on in the background. As long as you are taking enough pred you should remain fairly symptom-free because the inflammation that causes all the problems , the level should be the same as that you achieved in your first month on the starting dose. That dose was probably higher than you really need so now you are tapering to find the lowest dose that gives the same result. So, however you felt then is your guideline: any increase in pain/stiffness on that is a sign you are trying to go too low on your pred dose. They can also reappear if you have a cold or other infection - a urinary tract infection always causes a flare or me for example. If you are unwell like that - stop the taper and just stay at the dose you are at until the symptoms clear.
Ten mg is a very low starting dose - are you really well and fairly pain-free on that? What arlene describes is much more usual. It does work for some people but a bit higher is recommended to start with to make sure all the accumulated inflammation is cleared out. However - how you feel now before reducing at all is your guide - and any increase in that should remind you not to taper any further, wait a month and then try again. It doesn't mean you won't get lower - just not yet. You are already at a pretty low dose - there is no hurry.
If your inflammatory markers were raised at diagnosis then your GP should check them - in fact, your GP should leave you on the starting dose until they are as low as they are going to get and stable there. Having them checked before each reduction step is a good idea - it shows that the dose you are on at present is still working well enough and not allowing a creep up in inflammation. But symptoms always trump bloods which can lag behind.
Your GP should have referred you for a dexascan already so you have a baseline reading - many people do not lose bone density or already had low bone density long before starting on pred but pred gets the blame. My bone density has barely changed in over 7 years on pred and I haven't taken bisphosphonates either, just calcium and vit D which everyone should take right from the start.
philoso4 EileenH
Posted
Eileen, you say " As long as you are taking enough pred you should remain fairly symptom-free because the inflammation that causes all the problems , the level should be the same as that you achieved in your first month on the starting dose."
My starting dose was 20mg prednisolone. I have never been as symptom free as I was on that dose. I am now on 7mg. What would you think about my bumping up to 20mg again? I hate the idea because of the other problems associated with steroids (cataracts grew rapidly causing almost blindness and therefore cataract surgery - skin so fragile that the least scrape can peel back a large patch of skin - chipmunk cheeks and a pot belly - etc.). Would those problems be exacerbated?
margot34956 EileenH
Posted
Oh bless you Eileen, you have helped so much!
my inflammatory marker were 75 on diagnosis. I was started on 15 then. My doc has told me I can start to taper at 1mg per month. After reading all of your stories here I wasn't sure if I should, as my doc hasn't ordered any more blood tests or any bone density test.
I am not pain free, but certainly don't have the same pain as before diagnosis where I was hardly able to get out of bed. Thanks for explaining what a flare is, that is so helpful as I wasn't sure of what to watch out for during taper.
Sorry I should have included my starting dose before.
I have something to work with now thank to you!
I am so grateful for this site.
Thanks so much!
I hope you are doing well too
EileenH philoso4
Posted
Well you won't get cataracts again! That is a certain fact.
The question becomes "Why aren't you as symptom-free as you were at the start?" and "Is this really PMR?" - or how much of this current pain is something else? If 20mg of pred gained good pain relief and then pain kept returning then there was something awry right from the early stages. Were you reducing in too big steps? Are there other factors that should have been investigated and managed - thyroid problems, myofascial pain syndrome and so on?
Whether you increase the dose again depends on a few things - for a start, does it improve the problems you have? There is nothing to stop you using a higher dose for a few days to see if it does help, you can always stop of it is only a week or less. Then - how bad IS the pain/stiffness? It is always a balance of the benefits against the downsides - and which is more important to YOU. not me, not your neighbour, not even your doctor, And how much of what is going on could be improved by other measures - therapeutic massage is an important component of my management for me, for example. And to be honest - at present, a bit of osteopathy feels called for. Or I COULD increase the pred dose for some of it.
But above all - what is PMR. what is advancing age (sorry, but it IS an important factor) and what MIGHT be another disorder?
EileenH philoso4
Posted
janice85211 margot34956
Posted
Although diagnosed 4 years ago I also am new to this forum and think it great, you learn so much more from each other.
I have another question....
Some of you say that if you get pain etc again you go back up to the dose that you were ok on, do you ask the Dr first or just do it . My Dr appointment has been put back a week !
lynn1999 janice85211
Posted
It probably depends on your doctor. Mine has given me permission to change my dosage depending on how I feel. You should contact your doctor and ask.
janice85211 lynn1999
Posted
Thanks Lynn for your reply, I will ask when I see Dr next week. 🙂
EileenH janice85211
Posted
If it is just a case of a taper resulting in pain I think most people take the decision to stop the taper and stay at the previous dose for a few weeks longer themselves - especially in the UK where it can take weeks to get a non-urgent GP appointment and by which time a flare could be well-established if they ploughed on regardless. If you are only reducing by a small amount (as you should be) and then only delaying it for a few weeks it is fairly immaterial if you have to be 1mg/month behind someone's plan! We tell our doctors when we see them but we did discuss it beforehand.