Hi there just wondered if u can still have PMR even though your blood tests show no inflammtion.I have got widespread muscle pains which is worse in neck shoulders and hips but i hurt all over this has been going on for 18 months now ive had loads of blood tests but they carnt seem to find a problem the doctors have started me on 10mg of prednisolone a day for 2 weeks to see if it helps the pain just seems to be getting worse.
My ESR and crp were completely normal....But the pain disappeared immediately with prednisone.... The rheumy diagnosed PMR
Hi Ginette
Yes, from visiting this forum I know that not everyone with PMR has raised inflammatory levels. This can delay diagnosis.
As for the pain and stiffness worsening, it could be that 10mgs of Prednisolone isn't a high enough starting dose.
Others will reply for sure.
Hi Ginette,
You sure can - although atypical, I am living proof. My 'story' is hip and shoulder girdle pain for 5 months and, like everyone a reluctance to accept Prednisolone. However, the pain won in the end and I have been on a very low dose for 3 weeks with wonderful results. I only wish I had accepted the need earlier as I feel like a new woman. The GP started me on 5mgs - I know ridiculously low and not the minimum recommended but having felt a difference and having been given access to a search project about dosage via this site, we have increased to 7.5mgs and I am 'happy' with that, moving without thought and only a little shoulder pain. I am still waiting for a hopsital appointment to confirm the diagnosis but it's pretty clear really! I have found this forum a magnificent are of expertise and support.
good luck.
jane
Hi ginette. 10mg is quite a low dose for starters. the average starting dose is usually 15mg a day but in my case I had to go to 20mg and then a week later up to 25mg a day before I got the pain completely under control, so if you find that the pain is no better at 10mg I would suggest trying 15mg for a couple of days to see if it helps or even higher if needs be. The main thing is to get the pain under control so that you are pain free to start with and then worry about reducing afterwards (but not to quickly) as per suggestions on this forum of which there are many.
It's good you are getting the prednisone trial, but it would be better if you were getting a dose closer to the recommended standard to start which is usually 15 or 20 mg. Some people do manage to do well at a very low starting dose, but most don't, so the doctors normally like to prescribe a dose which is likely to help nearly all the suspected PMR cases, which is more like 15 mg, prescribed for one week. The initial starting dose is usually the most you will ever need to be on if you are able to follow a sensible tapering regime. How many days have you taken pred? It doesn't work instantly. Some lucky people find some relief within hours but I wouldn't give up hope before a few days have passed. If you still note no improvement, ask if you can increase your dose.
I know everyone else on here has said that you need to be on a higher dosage and I would agree except you said that you are getting worse not better and I would think that you should see some improvement on 10mg certainly not worse if it were PMR. Has anyone checked your thyroid? What about fibromyalgia? There are other diseases that cause body aches and pain then PMR. Either way i hope you get help soon because living with pain is a terrible way to exist. Hugs!
There are some great resources on the front page of this forum:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
well ginette, apparently , you can still have pmr, even though bloodwork doesn,t show inflammation,in particular your csr levels, sed rate etc, at least that,s what i have read, and i have read and researched a lot, as well many other patients have said the same thing, such a hard disease to diagnose, i understand mostly diagnosed by symptons, so what they do is try to eliminate other diseases that could be present and cause similar symptons,
Yep. And in my case the first doctor I saw (repeated visits over the course of about a year) didn't consider my blood results relevant because of my advanced age, mid sixties at time, so she considered the results normal for my age. As I believe most of us here would suggest increased inflammation with increased age is most logically explained by the fact that with increased age there may well be more inflammatory processes going on in the body, but that's no reason not to treat whatever the cause could be!
Thanks for the reply everyone I have just started the 10mg today so will see in a few days if it helps I'm only 38 I will be 39 on Monday is this to young to get pmr
FYI my first bout was @ 53, second @ 63. sero-negative
both times. In such cases....short term prednisone can be used as a diagnostic tool. If PMR, you may see dramatic, nay, Miraculous results. 6-10 hours.
Best of luck, and we all hope the pred does it, but are sad to welcome you to our club.
I don't think it is too young, but it is unusual. Your response to pred will be a key diagnostic tool for the doctor, and it could be because of your age that's why they're trying with such a low dose as they don't want a higher dose to possibly mask some other disorder. Patience!
well i,m 68 and although have had aches and pains on and off, back troubles come and go, through years, this was different, slowly developed from sept to full blown agony by oct 8, and yes, first dose of 40 mg pred, same day, few hrs later, no symptons, only have experienced lately now as tapered per dr instr, bout 3 every day, down to 20, which i have been on for a week now, feeling same in am,s as i did leading up to full blown pain,
Yes, about 1 in 5 patients with PMR and GCA don't have raised ESR and CRP.
However - as has already been said - 10mg is a fairly useless dose. The recommended starting dose in the most recent international guidelines is the lowest that works between 12.5 and 25mg/day. Some people simply need more than others (not everyone absords the entire dose, those who absorb less, need a higher starting dose). The usual start is at 15 to 20mg.
However you are young and it is said young patients are more likely to be atypical. You must be referred to a specialist because PMR is only the outward expression of an underlying disorder and there are several which MUST be ruled out. There are a few other forms of arthritis which can present almost identically and which are better managed with other drugs.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
has a load of links to information, including the 2015 recommendations for management of PMR and a paper for GPs (Bristol paper) with a potted "how to" which you could waft under your doctor's nose. Are you already under a rheumy? If so, they seem a bit unaware of best practice. Where are you? In the UK or the US?
My experience is similar to some other responsers. No blood markers for inflammation, but miraculous relief on prednisone. All of my stiffness/pain was bilateral. I had another unusual side issue of shortness of breath. It, also went away with the right prednisone (actually Medrol) dosage. Now at 8mg a day after some initial wild roller-coaster swings in dosage and symptoms. Pretty stable. Has been about year since diagnosis.
Hi I'm in the uk my gp sent me to a neurologist.
Hi amkoffee they checked my thyroid it is normal my gp did mention fibromyalgia I'll have to see how I do on the steroids but will ask why I'm not on 15mg or a bit higher like what other people said is usual dose is
Hi I've just started them today
Then it will take a little while. Pred is not a painkiller as such. It works by reducing the inflammation which is the cause of pain in PMR, and that doesn't happen instantly. Hope you feel better tomorrow!