A year ago I reduced down to 8mgs, have had pmr since Aug 2013 in this time I have managed to get down to 4.5mgs but eperience pain in joints in both hands wrists have gone back to 6mgs not so severe do not know if this is through pmr or arthritis I also take Adcal and Risedronate 1 a week
Does anyone experience same.
Regards
Lion king.
Hi Lion king, I have had something similar. When I dropped my pred down below 4mg I got bad pains in both my wrists to where it was quite debilitating. I had not experienced this before, so was uncertain about whether it was pmr or something else kicking in. I had an appt with my Rheumy, and he was concerned about arthritis, so had me do a series of x-rays on my hands and wrists. Results showed no arthritis, and nothing else showed in bloodwork, so just put it down to pmr.
That was several months ago, I am currently on 3mg pred, and mostly the wrist pain is gone, although do get it once in a while still. Hope this helps!
If I feel a bit sore, I have found that taking one or two Panadol helps which didn't when I was first diagnosed with PMR. In May 2014. I Am down to 3 sometimes 4 mg of pred. now.
I have found keeping busy helps too. If I sit for too long I start to feel stiff and sore. My hands were sore when first diagnosed but not now.
I wrote in a previous post that I find a glass of fresh orange juice helps, an alkiline diet (little red meat), and the yummy bread recipe " The life Changing Loaf of Bread" mynewroots.org it is just the best. I only have two slices (not too thick) a day at lunch.
All the best.
Hello Lionking, when I saw my Rheumy and we were discussing reducing, she said to me that I wasn't to be surprised if I could never go below 5 mgs., as after having pmr it is quite common to have to remain taking steroids as the body finds it difficult to start producing it's own natural ones again. I am still a long way from being that low, but thought her comments might be useful. Good luck!
Hi Lionking50,
By going up to 6mg you say the pain is not so severe, so on one hand (sorry about the pun!) it could be that "your" level of Pred is around the 6 to 7mg mark. On 8mg you were ok, but during the drop to 4.5 mg you've gone past your optimum level, very easy to do, because it sometimes takes a little while for the inflammation to raise its ugly head again.
It could also be arthritis, it's sometimes difficult to tell the difference. I have it in back and left knee, it's ok at rest, but it sure hurts when I put weight on it. The Pred does mask that pain as well at higher doses. If it is arthritis you can take co-codamol with Pred, but you do need doctors prescription. Yet another tablet, unfortunately. Or you can use Ibruprofen gel - sparingly though! That will also answer if it's PMR or not. If it is PMR only Pred will help.
You also have to remember that as you get lower on Pred the normal aches and pains of life come back anyway, especially if your adrenal glands are a bit slow in kicking back in. Tell me about that!
Suggest you stay at 6mg for another couple of weeks, hopefully things will settle down by then. If not, then you may have to go up again. Sometimes just 1mg can make the difference!
Hope you soon feel better.
I agree with DL. If I am reducing the first sign I have gone too far is that my wrists ache, worst at the base of my thumbs. If that happens I stop the reduction and go back to where I was - usually the wrist pain goes.
The other day I found an article for "teaching" German doctors how to identify and then manage GCA/PMR which mentioned that there is a seasonal component to GCA which suggests an environmental factor. I have heard the seasonality bit before. This morning not only my lower back but also my hips are sore - I've been wondering if I have a flare hatching in response to a UTI and over the weekend I felt great after a dose or two of an antibiotic. It lasted until yesterday - but today I definitely feel like a flare! Thinking about it, my PMR started at this time of year with the first niggles and the 2 previous flares were in January too.
I'll be good and won't swear in public...
how unlike you!! sorry to hear you are not at your best right now, hope you soon improve! virtual smiles...... or have I gone overboard!
Hi Lionking50,
I have been with PMR for nearly 4 and a half years now. I've got down to 3 1/8mg twice and for many weeks. I've had problems with both hands before the PMR kicked in and I've had operations for carpal tunnel syndrome and 5 trigger fingers, 2 more to go. But when the surgeon told me the pain I was getting wasn't to do with the trigger finger and I've been tested for arthritis, osteoarthritis and rheumatoid, I don't have either, so it only leaves PMR. When I was taking pred and liquid Enantyum 25mg, this is a Spanish anti-inflammatory. It relieved most of the pain, but the guys on the site advised me not to take it with the pred. So when ever I go to sleep, my hands stiffen up and ache. I can put up with this but it would be nice not too. I've gone up to 4 1/8mg of pred, but no change in the hands.
The only advise I can give which helps me, is to put my hands in very hot water first thing in the morning and flex the fingers. Very quickly they are back to nearly normal.
Best regards
Buenavista
PMRpro, oh dear, I'm so sorry to hear that! As for the "seasonal component/environmental factor" theory, my experience could certainly bear that out. My PMR symptoms started in a January and GCA symptoms the following January. After being in remission for 3-4 years, this January I have had a couple of weeks of lower back pain and hip pain (unable to lie on one hip) which followed on from a chest infection. It didn't resemble the usual symptoms I occasionally experience due to spondylolisthesis but definitely did resemble those of PMR. I tried donning my support girdle but whereas it always helps with my back pain within a couple of days, it didn't on this occasion. I laid low for a couple of weeks and thank Heavens the last few days I have felt better, otherwise you would have heard me swearing from the rooftops. Hopefully, if it was your UTI that stirred things up for you, a little increase in steroid dose now will see you back to normal asap. Good luck!
hi Celtic,
sorry to hear you've been low as well! All I can say is (selfishly I know) - hope it doesn't spread to the 3rd wise monkey!
Oh DL you really are a tonic. Life hasn't been much fun so far this year, even hubby being carted off to hospital by the paramedics last week - hopefully it was just a kidney stone but he's just had a CT scan to rule out anything nasty (he already has P/C). Your post has made me chuckle - I love your humour....wish you lived next door!xx
thanks, sorry to hear about your hubby. Sometimes you just want to stick your head in the sand don't you! Mind you, the view wouldn't be much for everybody else!
Which of us is which? Though it sounds as if both Celtic and I need to be the ones with our hands over our mouth,,,
Well, obviously I'm the blind one ... come on now! Wake up at the back! Although the mouth gets out of control as well...
Having got down to 3 mg I suddenly lost grip in my right hand and power in my right wrist. My real tennis racket flew out of my hand on 2 occasions. I was worried about arthritis and went to see a leading sports therapist
who I know well and who gave me an ultrasound scan on my hand and wrist and confirmed there was no arthritis. I increased the dose to 5 mg and the strength has largely returned and pain in the wrist has gone. I am now back to alter meeting 5 mg and 2.5 mg but would like to get back to 0 as (at 69) I have had to give up all my Olympic ambitions until I am off the drugs!!!
Viv Williams
Way to go Viv - or should we call you Venus? !!!
I have the same problem. I have been told the pains are not pmr but as I tested negative for arthritis it could be seronegative arthritis. How do we ever know ?
Reducing pred and flares
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