Hi everyone, I don’t usually post on here but do read all the informative posts every day.
I was diagnosed in July 2022 and put on 30mg of Pred and tapered down every 2 weeks. Ok until I reached 8mg but getting very uncomfortable and once in 7mg was unbearable. The doctor put me back up to 10mg for 2 months and to taper down 1mg every month after that. BUT my shoulders are so uncomfortable and am feeling very low. Spoke to the doctor who sent me for ESR blood test which showed inflammation is down to 6 from 80 at start. So Doctor has sort of dismissed me and says she doesn’t need to see me as blood test looking good.
Any idea what’s happening to me? Should I still be experiencing this amount of pain?
Thank you for listening to me.
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PepJac
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If you are ever uncomfortable at any dose STOP REDUCING. You should have increased by at least 5mg and seen if you could knock the PMR on the head, you obviously did not do this by your smaller increase. Personally I would increase to 15mg for a week, see if things are better then reduce say 4mg or 5mg and try that for a while.
No you shouldn't be suffering so much pain... and I would say too fast a taper in the past - every two week is bonkers, doesn't give you time at each dose to know that's enough before you drop again.
Unfortunately you may have dropped down many times before the inflammation has built up again ... until as PMRpro often say the bucket has overflowed, and you are in trouble.
Usual advice for a flare is to up by at least 5mg over last dose you felt okay - so only going up to 10mg probably wasn't enough to clear out all the built up inflammation - in hindsight 15mg probably would have been better....so to add to already too fast a taper you didn't get the flare back under control.
As for GP's comment re bloods, symptom are always the key, not bloods...
So what dose are you on now?
Problem is below 10mg your adrenals will soon start to need to work again so you have two things to manage... them and your taper. So you really need to be tapering 1mg every 6-8 weeks, although many find 0.5mg per month better.
But you do need to get stable again - so perhaps have a look at this link for dealing with a flare -
thank you so much for your info DorsetLady. I would like to show the doc your reply but guess she wouldn’t like that. Will try to get another appointment with her. She never really has time to listen to me.
I would try to talk to your GP. I explained to my GP about tapering using DSNS and he was completely understanding and knew about this forum and is supportive. Take care.
No she probably wouldn’t- but I think you do need to try and discuss with her….I know some are rushed off their feet, but they do still need to listen.
Does surgery have an eConsult facility - if so, perhaps you could explain that you don’t think your PMR is under control even though you did go up previously and maybe suggest you try a slightly higher dose again, and then a slower taper….might work. If you make it think it’s her idea…
No they don’t have an eConsult facility but after speaking to hubby, have decided to go up to 15 tomorrow for a while and hopefully be able to get another prescription. Last time she reduced my tablets.
To answer the question, no you should not have this pain. All has been said, and your best bet is to get the doctor on your side. No point taking any pred if you aren't on enough because then you have both your symptoms and potential side effects of the medication.
I suggest you try to communicate by asking questions, what does she think about (e.g. acceptable level of pain, if it was her in the situation/this slow taper which helps people taper with fewer problems, etc?) and also tell her what you are doing/plan to do to mitigate potential pred side effects. After all they want us off pred asap because they are more afraid of the side effects than they are of the effects of active disease, or so it seems.
Common potential, but not inevitable, side effects - both weight gain and high sugar levels controlled by diet. Bone thinning (potential to develop osteoporosis) mitigated by diet, supplements and appropriate exercise (not additional medication). There are people on here who have successfully dealt with all these, and other things, so please go ahead and ask your questions, and make new posts for new subjects if you want, to reach more of us. Good luck! 🍀
Hi. I'm not a doctor so this is only based on what I've read and my experience. I think they have tapered too quickly. I started on 15mg for 1 week, then 12.5 for 3 weeks, then 10mg for 6 weeks. Then I've gone down 1mg every 6 weeks. Everyone is different but my pain has gone.
Hello PepJac, this is just a thought: I have found I get a quicker reaction with e consult, which I understand your surgery unfortunately doesn't have. If things get really difficult (you mentioned the fact that your GP reduced your tablets), I would put something in writing to the surgery. At least then it is on your record and you could explain how you feel, as you have done to us.
I appreciate that GPs are overworked and the NHS is falling apart, BUT what on earth can we do if those we consult have no empathy with our (your) position? Rhetorical question...let us know how things go for you, PepJac, and remember you have many friends here.
Ridiculous - in that case write to surgery - and drop letter off for GP...unless they have an email contact address...I know you said they don't have eConsult.. but as tempusfugi says it requires a note on you record...
sorry you are going through this. Every time my doctor wanted me to go down too quickly I flared. I now do it my way according to what I have learned here and he is finally fine with it. I do a half a mg a month. I will be starting 2 1/2 mg next week. So far so good. You do need to nip this in the butt like others have said. Best of luck and feel better!🌻
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