I had PMR with a constant sore throat for all the 5 years before diagnosis. It affected my voice and I had to stop singing. It did improve a bit once I was on pred but not entirely. I repeatedly reported it to the GP - together with all the PMR symptoms - but he failed to put 2 and 2 together and find any diagnosis!
After 3 months I'm pleased to hear they are thinking of tapering - most doctors would have been at you to start tapering after a month! I would hope you are stable at 20mg - but your mention of other aches and pains does concern me a bit - as does the "fairly".
You can't return to your previous level of activity when you start pred - that will lead to all sorts of problems in the early days. You have a new normal - the pred has cured nothing, it is a management strategy to manage the inflammation of an ongoing chronic disorder that is likely to last years before it burns out and you finally get off pred. You will now taper to find the lowest effective dose - not necessarily to zero. I hope your doctors haven't led you to believe this is now all done and dusted - this is the start of the journey.
Fairly stable in that my legs feel very week and wobbly and I still ache quite a lot some days, I asked GP if I should expect to ache still and she said it was probably because of all the inflammation over last few months. ( inflammation marker is now down to 5 - it started at 82)
I was started on 15mg by a GP in the practice - and then after a month a different GP cut it down to 12.5. The inflammation went back up to 18
The GP I am seeing now phoned the Rheumatology consultant and she saw me straight away and put it up to 20mg for at 4 weeks - also has phoned me several times since and now given me a taper plan to start next month
Have accepted that I am just not going to feel well - almost all meds upset my stomach and the pred makes me shake. My BP has shot up (more meds) Even when I don't ache I feel exhausted after doing very little physical activity
Have started a log of activity, and resulting tiredness - also food and BP
The GP who diagnosed the PMR initially warned me about the problems with steroid and the length of time it could take. So I was aware - but in reality I had little choice - the pain was agony.
At least I am lucky in have a GP and Rheumatologist (both female) who I can talk to and who listen.
And who have a realistic view of what is happening.
I suspect you are still trying to do to much for PMR-bashed muscles under the influence of pred. But it WILL improve as you learn to pace better. It is silly things like not walking (say) for an hour but splitting it into 2 or even 3 chunks and having a rest - I and OH used to walk to a local restaurant, have a leisurely lunch and then walk back - no way I could have done it in one. And when you do start to exercise, even walking, build up very gradually - 5 mins the first day, if you are OK the next day, add a couple of minutes the next and build up like that - sounds slow but it isn't really when you don't end up totally flat out again.
I promise, in a year you will look back and be amazed how far you have come! No-one ever believes me but often come back to admit I was right!
Thank you, although this was not meant for me it was a timely reminder. I have been struggling with walking, we live at the bottom of two hills so difficult before I get anywhere and my husband has to drive me to the local shop. I miss walking. I used to walk miles with my dog. I feel as though something has been stolen from me 😞
You do until you work out how to get around it. But it will come - even with your hills! Have you anywhere near where it is flat and you can get there and back easily with a bus or a lift from someone? I live at the foot of mountains but can walk along the river, just a very slight hill one way.
Thank you, yes. My husband is very accommodating and we always go somewhere when he is free. He understands the need to get out and move. He is a runner and also uses the gym regularly so he 'gets it'.
I had a sore/rough/dry throat up to my GCA which was resolved by steroids. However, sore throat could be oesophageal reflux even though you are on stomach meds (I did) or fungal infection due to the steroids. There are other reasons too.
Where in the throat is it? High up at the back or further down?
This sore throat seems to have come with the higher dose of steroids. It is quite high up and feels very 'mucus thick'. Will have to go back to GP again!
Hi, I had a perpetual sore throat which started with pred. I was referred to an ENT chap who stuck an endoscope up my nose and down my throat and said everything was fine, no reasons found. I was prescribed Diflam.
However once I got below 15mg the sore throat went, so I put it down to the pred.
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Is it normal with PMR for the skin to feel tender to the touch?
Yes it is PMR
Sore throat, red flushed face.
Excuse my ignorance but is this PMR or GCA?
