I’m long term PMR, down to 6mg pred and this will be my dose for life. I still ache every day and take normally two Co-codamol 30/500 first thing in morning and at 1800 hrs. I am due à medicine review by my surgery pharmacist and I am pretty sure they want me to cut down or stop the Co-codamol.
My question is is it better for me to increase the Pred for pain relief or insist on opiate. I’ve tried Gabapentin but it makes me want to sleep all the time. Rheumatologist no good as appointments seem to have run dry and when you do get an appointment you have to wait a year for the next one.
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sharpedge
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Rheumatologist and doc in London have both said my adrenal glands are finished and as I had got down to 6mg, rheumatologist said that would be the dose for life. 6mg has not alleviated the pain hence the co-codamol. That’s is why I ask if I increase the pred till pain goes I can then give co-codamol the boot.
I am male and therefore pretty useless at giving details of my PMR history other than more than 10 years and many varied doses of pred. My biggest regret is lack of rheumatologist appointments.
Sounds a bit of a muddle all round (being polite there)!
Are you sure all pains are PMR related? If so, you may find that a short sojourn up to 10 or 11mg for a week or two (no more) might sort them out (usual procedure followed for dealing with a flare) and then dropping back down to say 7mg.
However adrenals struggling (not sure they are completely kaput even after 10 years) can cause general aches and pains.
Don’t suppose there is any chance of you seeing a rheumatologist privately for a second opinion. If you are still in London area -Prof Rod Hughes is very good. Have a look a this -
Or raise a new post asking if anyone can suggest someone in your area…many will see you as a one-off.
Short sojourn sounds good except I would need extra prescription, unlikely I will get extra pred based on advice from forum. (Even though I think you are more qualified to advise).
Was 100% assured adrenals were U/S.
Have moved from London so will post for recommendation for my new area.
You may struggle to get extra Pred -but if you explain it’s only a short term increase and will (hopefully) stop the need for Co-codamol you might strike lucky -no harm asking
I will go from 6mg to 10mg for two weeks and discontinue the co-codamol for that period. I’ve checked my stock and I have enough pred for this exercise.
I am on day three of my sojourn. To recap, I’ve gone from 6mg to 10mg and have stopped taking co-codamol. Day 1 I felt terrible, particularly upper arms and legs. Day 2 similar but not as bad. In desperation I had a brandy at lunchtime which made things a bit better. Day 3 (now at 0645) shoulders and legs still.
As you are only at day 3 you may need to give it a bit more time for the extra Pred to kick it - and timing of pain (early morning) and are typically PMR.
See if it improves throughout the day as you go on - preferably without the brandy at lunchtime (if you can). That might be helping you, but it’s not helping the diagnostic side of things 😉.
Day 1 may have been partially Co-codamol withdrawal…
I would be hopeful that by day 7 you should notice a distinct improvement- so stuck with it, and be patient..and do keep us updated please.
Had a bad day yesterday and last night my feet felt they were on fire. I took evasive action, 2 x co-codamol and the relief was most notable. I have therefore reverted to my old regime. Wanted to thank you all for your advice.
Have you pressed for a referral? A pharmacist can look at you from their perspective but they are not specialists in managing disease like PMR and RA. Pharmacist care is ok with a stable, adequately monitored, diagnosed condition but yours sounds, on the face of it, none of those. I can see why they might want to get you off the opiate which can also give you rebound pain in itself. The point with a proper assessment, even of just by a GP, is not to merely achieve an end goal of being free but making sure you are not sustaining lasting damage from uncontrolled disease. It might even be relevant for you to attend a pain clinic. Why are you on 6mg “for life”, who said and why? Flaring? Adrenal insufficiency? A history in your bio would be a great help.
If co-codamol is helping I would be doubtful it is PMR pain - and personally, if 1 or 2mg helps whatever it is, I would prefer that to an opiate.
If 6mg is your baseline for adrenal function - a few mg more is the same as someone on 3 mg or so with normal adrenal function. Though they probably won't want to see it like that!
And give this to your GP - I can understand it so he should cope ...
I take a baseline of 2 Co-Codamol tablets every morning for my OA and have done for many years (increased if neccessary). They have no effect on my PMR.
I was in a lot of co codamol and along with other opioids have now started with non fatty liver disease, after a while your body gets use to them and they don’t have as much affect as they used to, 2 isn’t a lot to be on.
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