Two months PMR and increase in Pred

[Rose8950]

After an attempt at tapering down seven weeks after diagnosis. I went from 20mg to 15 mg of Pred on my rheumatologist suggestion. After two days 50%. of my symptoms were back .

Doctor had me go up to 25 mg, after three days, the pain was still there. On my own I decided to go up to 27,5. At last I have spent a good night without any pain, left arm is still a bit achy but I guess it will improve ???

I seem to be on a very high dose compared to everyone on this forum. I’d like feedback of people who had to go up to get relief and how long it took for this relief to come. I have my lesson on tapering too quickly and will follow the five week protocol on tapering after I go back to no pain.

I was pain free prior to this attempt at tapering so I hope to go back there but I’m stressing out about the 27,5 mg which seems so high.

[piglette]

That sort of drop would have finished me off too, although some peoole do seem to manage it. Some doctors seem to go for gold and push for a high reduction!! I feel 2.5mg or even lower is probably my max reduction over 10mg.

[PMRpro Ambassador]

There are a few people on the forum who struggled to get the pain under control at the start and at least a few needed to go up to 30mg to get things started,

The 2015 Recommendations for the management of PMR gave the starting dose range as 12.5-25mg, exceptionally 30mg, Some people just need more - the amount you absorb of your dose can vary wildly between about 50% and 90%. The receptors that are required for pred to exert its effect also vary in number. And it may not be "just" PMR, many patients with "just" PMR symptoms actually have large vessel vasculitis causing the symptoms and that needs more pred too. PMR, LVV and GCA are a spectrum of disease - you can be anywhere on the spectrum, including on the border between one and the next.

You getting a response with that extra was very fast so you may have been almost there with the lower dose - don't worry about it. Some people take up to a couple of weeks or more to get the response. And you have been up and down a bit and struggling - that also often makes it difficult later.

[Rose8950 in reply to PMRpro]

I’m always stressed that I might develop GCA. The only symptom I have are dry eyes.

[DorsetLady PMRGCAuk volunteer in reply to Rose8950]

No point in stressing about getting GCA -it’s not a given -just be aware and take action if it happens..

[PMRpro Ambassador in reply to Rose8950]

Dry eyes have little to do with GCA - they have a habit of accompanying a lot of autoimmune disorders. Keep using eyedrops to keep the surface of your eyes in reasonable shape. No point worrying - cross the bridge if you ever get to it. The chances are you won't. As DL says - just be aware there is a chance.

[Charlie1boy]

Yes, I was started on 20mg, which I stayed on for about a week. For me the pred didn’t last long enough from one day to the next, and my GP put me up to 30mg to clear out all the accumulated inflammation. I stayed at this level for three weeks, then reduced satisfactorily to 25mg. All went much better after that.

In my experience, it is really important to try to get the PMR under control early.

Good luck.

[Rose8950 in reply to Charlie1boy]

Thank you for your quick response, I thought I was a bad case of PMR at 27,5.

After three days on this dose I am starting to feel normal again except for a little pain in left arm. It think this inflammation had been in my system for a long time and needed to be addressed firmly,

[DorsetLady PMRGCAuk volunteer]

In previous post, I did suggest you needed longer on increased doses- so give it a but more time, as and as said if you have a sticky start, sometimes it does take longer to get thing fully under control. It will happen, so don’t worry.,

healthunlocked.com/pmrgcauk...

[diana1998]

I was diagnosed in hospital and started on 30mgs. So don't worry too much. 70% reduction in pain..huge relief. Went to bed for an hour after lunch to combat the fatigue.

[PMRnewbie2017]

Re dry eyes. I also suffer and my tear film is unstable too. Have you tried hot but not boiling water compresses and lid massage? I find it really helps but it needs to be done twice daily to start then daily. I get lazy and it always bites me! The drops are useful but if your meibomian glands aren't functioning optimally you will need to do the compresses. Plenty of videos on line which explain the procedure. Also, if you're using bottled drops several times a day, because they contain preservatives, you can become sensitive to them, so it might be worth switching to single dose unpreserved vials. Clinitas soothe is an example.

[PMRpro Ambassador in reply to PMRnewbie2017]

I tried a new brand last week - that was 13 euros down the drain as within 2 days my eyes were far worse than before!! Supposedly no preservatives but something that disagreed with me. I need them - but like painkillers, you pay your own here. But they do go against tax ...

[PMRnewbie2017 in reply to PMRpro]

I know what you mean. I've tried lots of different brands. I tried Hydramed Night Sensitive as my eyes are worse when I sleep. OMG, what a disaster!

[PMRpro Ambassador in reply to PMRnewbie2017]

The pharmacist looked at me as if I was nuts! I know I am - but not in that way!!!

[sidra1968]

I had to go to 30 mg for 6 weeks..

[Rose8950]

At least I know I’m not the only one…..