Update on tapering problems

[Paul76]

Further on from my last post I am going in the wrong direction. I had increased my pred to 15 mgs for 6 weeks as per my GP direction. Unfortunately it didn’t really touch my pain and stiffness and then 3 days ago I had a flare in that my neck, shoulder and shoulder blade have become extremely painful. There was no pain there before. Saw my GP for a review this morning. She has been insisting that I take cocodamol even although I have consistently stated that it does no good. She was concerned about my pain level and bad mobility. I now need to use a walking stick all the time. She’s prescribed Etodlac 800 mg tablets, once a day. I haven’t taken any yet as I have no appetite and don’t want to risk taking them on an empty stomach. When I mentioned increasing the pred she said that the surgery guidelines were that they can only prescribe a maximum of 15 mgs and would have to contact a consultant who could authorise an increase. Now this consultant would be the one who wrote to my previous GP stating that I had no sign of PMR, plus or minus fibromyalgia and what was my plan to get off steroids! I have a few options. I feel I have to try the new painkiller and report back the GP. I have a good supply of pred so should treat this as a flare and increase to 20 mgs for 2 weeks. Wait until I’m referred to the NHS consultant and when she inevitably replies stating that I don’t have PMR, go back and see the private Rheumatologist who confirmed that I have a classic case of PMR. This should not be so difficult. I’m just back from 4 weeks in Spain and all I did was rest. I couldn’t even swim as all the pools were closed because because of a drought so I really feel that I’ve done everything I can. This is all out of control and I told my GP this. Any advice and comments greatly appreciated.

[DorsetLady PMRGCAuk volunteer]

Oh dear what a muddle…

Etodlac is a NSAID, so shouldn’t really be taken with Pred - both are hard on stomach, and GP should have checked that. Or are you on a PPI [Omeprazole or similar] so she assumed it would be alright?

I’d think I might try an increase to 20mg under the flare protocol… that might be safer than adding in NSAID. It may also confirm whether it’s PMR or not.

That also gives a bit of time to decide on what to do next.. wait for NHS Rheumy or go private again.

[Paul76 in reply to DorsetLady]

Thank you. I’ve decided to increase to 20mgs for 2 weeks and see what happens. I do take a small dose of Omeprazole and the GP did mention that I might have to increase this but I really would like to avoid this if possible. Will keep you posted.

[DorsetLady PMRGCAuk volunteer in reply to Paul76]

Please do…

[PMRpro Ambassador]

Why on earth is it beyond some doctors to LISTEN to their patient? I'm also appalled they aren't listening to the private rheumy's opinion - they also work in the NHS!

I do think this could be more than "just" PMR even if the presentation is classic but the first rule out has to be whether the 15mg is simply too little. If that helps - then it ain't fibro messing things up.

And try taking the NSAID with food of some sort (a glass of milk is enough if you can't eat) AND some stomach protection (you can get PPIs and H2 antagonists OTC if you haven't been given them) and see if IT works better than cocodamol. It is for moderate pain - suppose it all depends how you define the degree doesn't it? If it doebe fibro,sn't help it supports the PMR dx, nothing but pred is much use. If it DOES help, there could well be something else going on - but unlikely to

Ironic you couldn't swim in Spain because of drought - if you had been in certain places last week, that drought broke good and proper and lucky you if you weren't there. Where were you?

[Paul76 in reply to PMRpro]

I’ve increased the pred and will take 20mgs for 2 weeks. Must admit that I managed some soup yesterday and then took one Etodlac. One of them certainly took the edge off the shoulder pain but now I’m not sure which. I think I’ll stick to the pred and, as you say, it may confirm if it is all PMR. I already take Omeprazole. Thank you for your advice.

[PMRpro Ambassador in reply to Paul76]

If you can bear it, just try one at a time. Changing 2 things at once is confusing as you have realised.

[Body_bonkers]

Afraid I’ve been in similar shoes Paul76 and wholeheartedly agree it should not be so difficult. I’d go back to the private rheumatologist and get them to instruct the GP on doseage and confirm PMR while you are put on waiting list for the NHS one as it could be a long wait. I’d also try an increased dose to 20mg before taking NSAID - good luck

[Paul76 in reply to Body_bonkers]

Yes I’ve decided to increase to 20mgs and see what happens. I think I’ve also decided to see the private Rheumatologist again. As we both say, this should not be so difficult. I’ll wait a couple of weeks then can confirm or not if the increased dose makes a difference just in case something else is going on. Really want to avoid adding in NSAIDs if possible. Thank you for your comments.

[sidra1968 in reply to Paul76]

Hope it works, just keep in mind it took 25-30 mg for a few of us here. My neck is my main problem area, too. Every time I get to 14 or 13 mg it rears its head again, but I'll get lower, just not now. Good luck, keep us informed.