Have got so far ,now back in so much discomfort again
Posted , 10 users are following.
Got down to 4 mg prednisone after 2years 3momths and my shoulders neck are back into so much pain again which makes my scalp feel as though it's being stretched every way I t can . What to do .I know it's probably a flare ,due to stress .Daughter after IVF expecting twins ,loosing one at 7 weeks ,hoping the other hangs on .She is now 16 weeks . Her other half was made redundant the day they started IVFand we have sold our house but cannot find one to buy that we want . I don't want to up my pred because it's been such hard work to get hear and want to be well for the wished for grandchild .i even think sometimes the pain is worse than when I started . Advice please .
0 likes, 35 replies
EileenH carol16456
Posted
You aren't having just a flare as such - you have probably reduced too far. You are never reducing relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. That is possibly 5mg - unless you have been reducing too fast. You need at least a month on each new dose anyway to be sure the new dose is stil enough.
But at this stage there is another complicating factor - below about 7mg your body has to start producing its own corticosteroid, cortisol, which is essential to life and without enough you will not cope with stress at all. One top doctor in the PMR field likes to keep patients at 5mg for up to 9 months to allow the reactivation of the adrenal glands and cortisol production to settle down - it is a very complex feedback system and swings about all over the place to start with. It has to adjust every time you change the pred dose so having a long period where it doesn't change but is low enough to stimulate the adrenal glands makes sense.
You MUST up your pred - or you will just get worse and be totally useless to anyone. I think it feeling worse then it was to start with is a bit because you have had so long feeling reasonably good, it happened to me at the end of the first 6 weeks of pred because the rheumy didn't think it was PMR so I was to stop taking it then. Within 6 hours of missing the first tablet I was in bed in tears.
5mg is a low dose, below the equivalent amount of cortisol your body makes - the side effects are minimal so don't feel this is a race to get lower. But if you leave it now you will end up having to return to the starting dose if you want relieef. Hitting a flare hard and fast means you can get back on track to the low dose you have reached. Ignoring it and refusing to up the dose will just set you back much much further.
carol16456 EileenH
Posted
Hi Eiseen have just got back from doctors , of course you never see the one that has been guiding me through all the ( pallava ) of pmr .
Anyhow she has put me on 10mg of pred for three days and then reduce to 6 mg which I will stay on until I see my usual gp.in just over 3 weeks . Had blood test today so unless there is a need to see any one sooner have another blood test in 2and abit weeks befor I see my usual doctorvBecause there was no tenderness around the face and cheek she did not feel it was gca . Have had this head pain on and of for the last 18 month when it first happened I had a ct scan which was ok for anything odd . However her parting shot as I left her room was , if upping the dose doesn't improve you we had better get a ct scan done incase you have a a lump or anything going on inside your head . Which has really made me feel really relaxed (I don't think )
The actual pain has come and gone when I get very bad shoulder pains so personally feel it's all tied up with the PMR . Thankyou for getting back to me
EileenH carol16456
Posted
Sounds like she needs a bit of brushing up on her patient relationship skills!
I would suspect that if your shoulder and neck muscles are tense it could cause the head pain - PMR and myofascial pain syndrome (MPS) occur together, it caused me awful neck pain which went up into the top of my head. I found Bowen therapy helped me a lot but you also get physios who do manual myofascial release techniques. MPS can cause trigger spots in the shoulder muscles, they can be felt as hard knots of inflamed muscle fibres and they can irritate any nearby nerves and make muscles go into spasm - both of which can cause pain up into the head. When mine was bad I couldn't even touch my shoulder muscles and the pain went right up over the top of my head. If you can afford it it is worth investigating that sort of treatment - you don't have to go on bended knees to a doctor for it either!
carol16456 EileenH
Posted
Thankyou Eileen looked up a couple near me and wasn't sure if they have to be accredited . Actually will have a go but a few round here seem to be working from there own homes .Should they have certificates etc only would prefer to find one tied up with a clinic
EileenH carol16456
Posted
Bowen do tend to be certifed by the Bowen associations but then work on their own. My last one in Durham in the north of England had a room in a hairdresser's! But she does also work out of a clinic in Newcastle.
There's the Bowen Therapy Professional Association (BTPA) and there is another one which I think is different, the Bowen Association UK, Bowen-technique is their site - but I just searched bowen therapists UK and got a load of links to various groups. Their sites will tell you if they are registered with them - as it explains on the site.
Whereabouts are you?
carol16456 EileenH
Posted
I will google as you did . I am in north east herts so hofully find someone . Will try tomorrow as just going to put up my feet for a while and let relaxation vibe float over me 😴
Thankyou will let you know how I get on .
Kdemers EileenH
Posted
Thanks so much for information about myofascial release because I have had the headaches, shoulder discomfort and was afraid a big flair in GCA. I called a reflexology man I know and he is going to work on trigger points. I think it will help.
EileenH Kdemers
Posted
Hope it does. But don't rule out a flare - be watchful.
carol16456 EileenH
Posted
Have made arrangements to see a lady from Welwyn Garden City who is quite near to me .
Will have a chat first about the Bowen massage and go from there .
Head pain has slightly subsided but shoulders and hand and neck appear to be a little worse . I know that tension is my worst enamy and hope as the prednisalone does its job I will start getting back to some normality . Although have never really been pain free from the start . Will let you know how I get on . All though a part of me feels I would be better to see her when I don't hurt so much . We are also going away for a few days next week . I wish I could say near you where it must be very pleasantly warm . Here it is so cold and we are going to a cottage in Chirk castle grounds north wales .But hay ho .
EileenH carol16456
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Haha - currently near me is NOT pleasantly warm I'm afraid! It is -15C or thereabouts in the mornings in our village! It barely gets above freezing all day. Central Italy is under a couple of metres of snow (and in Rome it is struggling to get to above 10C) - while we have had only a couple of inches all winter which isn't very helpful in a ski resort. All the runs are open - thanks to artificial snowmaking facilities.
Bowen is not massage - it is a very gentle therapy and you will probbaly think it can't possibly do anything. It won't matter too much that you have a lot of pain - and it should release some of that tension which will improve the pain. It becomes a vicious circle - or rather, a downward spiral. Some (though very few) people find they are unable to lie for the therapy at first - a good therapist will adapt their technique, some can be done while you are sitting I gather.
carol16456
Posted
results tomorrow which was done before the steroids were raised And have a blood test on the7 th Feb followed by a c/u with my usual doctor on the 8th. Your comments would be welcomed please Eileen
Anhaga carol16456
Posted
Are you okay at 6 mg? Stay there for a few days - Eileen will have better idea how long is a good idea - to make sure you are not going to flare again. If you still have any residual pain I suggest it's your call to decide whether a few more days at 6 is a good idea to see if it settles down (it could be steroid withdrawal) or whether you are sure it's still the PMR hurting you in which case ... well, I don't know how things are going with your doctor(s) whether you can increase your dose slightly again. Again, Eileen will have the expert advice.
Look after yourself - allow your body to heal. ?
EileenH carol16456
Posted
It all depends how you feel at 6mg - if you have any niggles it might not be enough. But you stick at a dose until you have a few niggles as you are going to get - your reference is how you were to start with. If you have a flare at a dose it probaly means it is slightly too low - so don't be in a hurry to go further, 6mg is a pretty low dose.
Kdemers carol16456
Posted
So sorry and I can only say return to a little more prednisone, or whatever takes the pain away. Then Start again little by little--Eileen and other's reduction plan--and hope that the next time does it. I am 5 years in and cannot get below 3 mg. Pred. but I certainly know and understand what is happening to me now when I get a flair. Good luck.
carol16456
Posted
EileenH carol16456
Posted