Not sure what to do. Need some advice. PMR since 2013.
Posted , 6 users are following.
Have been on 12.5mgms for about 2 months reducing down slowly but I keep getting pain in thighs hips and shoulders. (difficulty sitting and standing and getting in and out of car), I have increased the dose up to 15 mgms for a couple of days (reluctantly I might add) pain settles for a few days then comes back. Wanting to know what constitutes a flare? How long do flares last? Should I start back on 15mgms and do the Eileen reduction? I am just a bit confused as I am not sure why I am not settling. I don't get as tired as I used to. Get about 3-4 hours in the morning when I can do things like washing, cooking (if I feel like it) then become a couch potato for the rest of the day.I haven't been sleeping during the day like I used to.I have developed quite severe sciatica since my last post and am taking Lyrica and Tramadol for this. The sciatica is heaps better but not entirely gone. Still have insomnia also thinking about splitting pred dose to see if this helps. Would like some advice on times to take split doses.My GP lets me do whatever I want with the pred. My last ESR was 34 and CRP was 8. it has been reducing down from 26 since first diagnosed 2 years ago. Thank you for caring and sharing. Look forward to your responses.
Kathy
0 likes, 14 replies
EileenH Kassie_beetle
Posted
I (and others) have dealt with it using Bowen therapy. Manual mobilisation of the trigger spots in the lower back can also be done by a physiotherapist.
Diana112 Kassie_beetle
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Kassie_beetle
Posted
EileenH Kassie_beetle
Posted
tina-uk_cwall Kassie_beetle
Posted
you say that you have upped the dose to 15 which seems to work for a couple of days then all the pain starts again. I'm not sure if this is how it should be and. There sciatica could be hindering your recovery rate as this is putting more stress on your body.
also not sure if splitting the dose would help, it works for some people but the normal way to take the dose is as 1. Have you any other condition that could be producing pain or putting extra strain on your body thereby hindering your recovery rate. Sorry I can help you but I'm still puzzled about the 26mgs as your first dose? All the best, Christina
MrsO-UK_Surrey Kassie_beetle
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Kassie_beetle
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Sorry I should have clarified my comment. The 26 actually refers to the CRP reading when I was first diagnosed in 2013 not the Pred dose. Silly me. In relation to other medical conditions that may be affecting me. I have had all thyroid and parathyroid glands surgically removed. I personally think this may be linked to the PMR as there is a connection with auto immune as well.
Cheers
Kathy
tina-uk_cwall Kassie_beetle
Posted
if you do have a flare it will not reduce of its own accord it will only reduce when it's been brought under control with preds. I had a flare and upped my dose of preds from 9mgs to 10mgs and stayed in that dose for good 6 weeks then reduced using the very slow and small reduction method. I only reduce by .5 and stay on each dose for 6 weeks.
and maybe I am wrong as I'm not medically qualified but your body has a lot to contend with what with your other conditions so maybe it will take you longer to get to the finishing post. I would hang on at 15mgs, when I upped my preds to 10mgs it definately took longer second time round to get all the inflamation under control, and stay there for 6 weeks then reduce perhaps only 1mgs at a time staying on each dose for 6 weeks. That way each dose has plenty of time to do its work. Then when you get down to 10 then start Eileen's very slow, very small reduction method. Remember I have no medical training. All the best, Christina
Kassie_beetle tina-uk_cwall
Posted
Thank you for your support. It is nice to know that there are people out there who do understand. My friends and family just don't understand what it is like to turn into a ball of mush and not be able to do normal things like going shopping without it impacting on your life.
Yes, I am sure that the pain I am feeling is the PMR.Please see my response to Mrs O. I will see a physio and then have a think about increasing the pred. I am glad I can record TV programs as I watch them at night when I cannot sleep. I would be in trouble if I couldn't do this as I would probaly buy all the products they sell on The TV network shows overnight!
Thanks
Kathy
Kassie_beetle
Posted
Thank you for your comments.Sorry to hear that you to suffer from sciatica.It is truly ugly pain. The worst pain I have ever experienced. I do feel that the pain I am talking about is the PMR pain because it is in the front of my thighs as opposed to the sciatica which goes down the side of my leg. It is interseting to hear about the support girdle.Was this obtained through a physio?
Cheers
Kathy
MrsO-UK_Surrey Kassie_beetle
Posted
Now that you have mentioned the thigh pain, It certainly does sound as though your inflammation is not under control at present in spite of the return to 15mg. Perhaps you just need a bit longer at this dose to get things under control again, and then, if you haven't tried reducing in very small amounts in the past, you should try doing so this time around, trying 14mg for one day, followed by 15mg for 6 days, 14mg for one day followed by 15mg for 5 days, and so on.
The support girdle I refer to at present is simply a supportive panti girdle. An orthopaedic consultant did get me measured and fitted with an all-singing all-dancing corset (you know those awful ones with laces and bones) many years ago which really did help on those occasions when my slipped vertebrae went into complete spasm. However, that was assigned to the bin long ago when I grew out of it! The panti girdle is sufficient help in times of need these days.....and much more comfortable!
EileenH Kassie_beetle
Posted
Try searching for myofascial pain syndrome - the pictures tell the story better and quicker than I can write!
Kassie_beetle EileenH
Posted
Cheers
Kathy
erika59785 Kassie_beetle
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I wish you speedy recovery!