Is this my new normal?
Posted , 16 users are following.
Hi Everyone,
my dr put me on 10mg of pred last Wednesday for PMR, and told me that I'll feel great. Well I don't. In the morning I'm still pretty achey and stiff. It usually takes until the afternoon before I feel better. Is this normal, would this still happen if I was on a higher dose? Some of you said that 10mg is too low to start with, but it seems to be what they do in the U.S. I guess my questions is, would it help to push for a higher dose, or would I still have the morning pain until the pred kicked in? How do you know when you're on the correct dose?
it really helps to read about other people's journey with this, doctors don't seem to have a clue.
thank you
0 likes, 85 replies
gillian_25383 Anniecurd
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paula63201 Anniecurd
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Sorry to hear you are in pain.
I think it depends on the Dr. I am in the US and was started on 20 mg. I felt great within a few days, no pain at all, except a frozen shoulder. This went away after doing physical therapy. That was December 2013. Am on 5.5 alternating with 5 and still feel good.
I think the correct dose is the one that controls the symptoms.
That Drs don't have a clue is an understatement. I spent 4 months trying to find a Dr who could help me: Internist (several visits and bloodwork), 2 Orthopedists (several visits), 1 rheumy, who misdiagnosed me after performing all kinds of blood tests. Since the meds he prescribed did not work, I kept looking for a different Rheumatologist and finally found someone who helped me.
Maybe you can ask your Dr to give you more Prednisone to see if a larger doses helps.
All the best,
Paula
Roda_4445 Anniecurd
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Anhaga Anniecurd
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Anhaga Anniecurd
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Mrs.Mac-Canada Anhaga
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where in Canada are you located? I was just saying to Joanne, who is from Ontario, that we should start a discussion to find people that may live close to us so we could arrange to meet.
Hugs, Diana🌸
Anhaga Mrs.Mac-Canada
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EileenH Anhaga
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Mrs.Mac-Canada Anhaga
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We visited a few years ago and stuffed ourselves with lobster and sea food chowder. My mouth waters just thinking about it.
hugs, Diana🌸
Mrs.Mac-Canada EileenH
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If you're ever on the west coast I'd be happy to show you the sites.
Have had a couple of great days in Trastevere. What a great area! Went to the Vatican today and to the colosseum tomorrow. Getting pretty tired so will take it easy for a couple of days in the Tuscan hills after that.
Hugs, Diana🌸
EileenH Mrs.Mac-Canada
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Tuscany is not meant to suffer from this cold front so enjoy it! I though t we might be heading that way next week - but Lake Garda appears to be going back to normal on Monday. Phew!!
bob73443 Anniecurd
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Believe it or not, I was put on 60 mg per day by my US doctor. I don't think I've ever met anyone that was put on that high a dose (unless they had GCA), but within 24 hours I felt like a normal human being -- almost totally symptom free.
I quickly weaned myself down to 15 mg per day -- I forget how long it look. I've been following the very slow reduction scheme that others are on and now I'm down to 8 mg per day.
I am still achy, especially in the morning. But the achiness has not increased as my dosage has decreased. I will continue the slow reduction scheme as suggested here because it works.
It also seems that the UK has some very standardized ways of handling almost everything, while we here in the USA do not. I see both advantages and disadvantages of the standardizations. First, there are always exceptions. Secondly, sometimes the standardized ways are not good enough. But in the case of PMR, it seems that the UK has standardized on a very effective way of dealing with this condition.
My doctor has been great in that he's willing to LISTEN to me as I share what I've learned here on the forum. He even frequents the forum himself.
It might be worth a shot to mention this forum to your doctor. He's roll his eyes until he actually visits this site. Any doctor who does not appreciate this site (not just this forum but the whole site) is not worth seeing in my opinion.
All the best,
FlipDover_Aust bob73443
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tina-uk_cwall Anniecurd
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when we are first diagnosed with PMR very often many of us have been suffering the pains and stiffness of PMR for months so we are given 15mgs and kept on that amount because that 15mgs has a lot of work to do, and so that's why it is important to stay on that amount for 6 weeks. Not only must it round up all the existing inflamation but it then has to keep it under control, a hard and very important job. All the other doses are used simply to keep whatever inflamation is left under control.
In my opinion 10mgs was not enough of a dose for you and so it is only controlling most of your pain but not it all. I would up my dose to 15mgs and stay there for at least 1 month, then reduce as above. Look up the Bristol PMR plan. This plan and information was written by experts in this field and this method us classed as gold star streatment.
the reason why many of us then adopt the dead slow and almost stop method is because as we go through the lower doses a straight reduction of 1mgs is simply too big a reduction and there is the potential of a flare, which is something we all try to avoid.
you know when you are on the correct dose when you do not experience a flare, yes it's as hit and miss as that, so that again is reason why it's important at the lower doses (10mgs) to reduce by only .5, as little doses are not as severe on our bodies than a whole mg.
our PMR journey will be a long one and often anxious one so it is important that we approach this with all the info we can and unfortunately even in England I'm am shocked by patients who visit this forum with their tales of totally inappropriate information and a less than useless care plan given to them by their consultants! All the best, regards, tina
faye______00403 Anniecurd
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l0mg. Can't remember why but went back to my Primary guy and he
immediately put me on 20mg which I think is the usual beginning dose.
I had sed rate done every 3-4 weeks and actually got down to 4mg
before sciatica attack knocked me on my butt and sed shot back
to 60. If l0mg is not working you need to tell him and ask for
at least 20mg to start........you'll know when the pain is gone that
20 is correct dosage to begn. BTW I'm in the U.S.
And yes this forum is great for info.....
Anhaga faye______00403
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tina-uk_cwall Anhaga
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faye______00403 Anhaga
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physical therapy and the exercises they gave me for the
sciatica helped a lot. Having said that I still feel it in my
butt but not bad. I think sciatica is caused by sciatic nerve
getting pinched and the pain was terrible. Way worse than
anything PMR has given me. Yes, I think 1 mg a week is too
much. If I ever get to l0mg again I'll do the .5 like all the
knowledgable people on here suggest.
EileenH faye______00403
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Many patients on the forums are reporting relief from a technique called Bowen therapy or Bowtech, It is a very gentle therapy so is perfectly safe to use in PMR and does not require a physician's referral - you just have to pay for it. if it is going to help you will know within 3 sessions - no improvement and it isn't worth pursuing at this stage. It is available in the US as well as the UK. It kept me going for 5 years with untreated PMR - it doesn't do anything for the PMR as such but it does deal with some of the add-ons and it often allows you to manage with a lower dose of pred.
Look around the forums for reports from patients who have tried it and think it is very helpful.