Increase

[Blodders2]

Hi all I've been on prednisolone for PMR since June on and off decreasing/ increasing, I increased from 10 to 15mg last Saturday but I am still feeling back, Pelvic, leg aches, dull headache and fatigued at least the shoulder ache has disappeared from the start, I am thinking of increasing dose to 20mg or more what are your thoughts. I thought I would feel a lot better seeing as it's been getting on three months since starting medication. I have an appointment with my doctor next Friday.

[DorsetLady PMRGCAuk volunteer]

Think you need to stick where you are until you see doctor. An increase of 5mg is probably acceptable with them, but doubt they would be very happy for you to increase by 10mg in total. They also need to be fully aware of what issues you are having and at what dose - so chopping and changing doses isn’t going to help that.

[sidra1968]

I went through rollercoasters like this the first 6 months, it ended up that 30 mg at 6 weeks was what it took for me. Currently at 13 mg over a year later. Try not to worry, we are all different. Try adding 5 mg more to start and if that works, tell the Dr at the appt that you were desperate for relief. Can you message them beforehand if you feel you must?

[Blodders2 in reply to sidra1968]

Thank you, yes, I can usually get a message to the gp. I have added 5mg today so see how I get on these next few days before I go for my appointment.

[sidra1968 in reply to Blodders2]

Good, and I noticed that I could tell it was working somewhat by day 5 or so..but it could take a bit longer so don't expect a miracle by today and be disappointed. This is all obviously just my experience, but I remember the terrible days and also remember getting to a point where I didn't care what the Dr. said about me upping it. I was willing to bet that he would do the same if it was HIM experiencing the pain. I was just going to respond with "well, I have to function".

I was pleasantly surprised when he told me he was glad I found my dose and to stay on the 30 mg for another 4 weeks. THAT cleared the inflammation/pain out, finally, but make no mistake, I had my spiel all in my head of what I was going to say if he was "mad". I ended up having to be VERY adamant with the rheumy I eventually got referred to (one that was clueless). I just kept saying "no, I refuse to do that. I am not going backwards" when he was big on a quick and huge taper plan. He then also "gave in" and now I am left to my own devices, mostly.

Keep me updated, please!

[Blodders2 in reply to sidra1968]

Thank you. Will post after seeing my GP.

[reefswimmer]

Hi

I'm now suffering PMR for the third time. The first time I was in my early fifties and everything ached.....thighs shoulders arms. I think I was started on a dose of 15mg prednisolone for two weeks and then advised to get down to 7mgs as that is the dose you can take long term without side effects. I got down to 7mgs quickly but it took me six years to get off steroids completely. However for the last two years I was only taking 3mgs and then 2mgs a day.

Totally free of symptoms for six years and then developed dreadful pains in my hands and wrists......back on steroids again, starting on 8mgs daily but this time managed to get off them in a year.

Then 2023 I started getting pains in my neck and shoulders and eventually in January 2024, once again my hands and wrists incredibly painful. This time even 15mgs daily did not seem to help. However I was reluctant to increase the dose. Some days were better than others and my consultant suggested I reduce my dose by 1mgs per month. I am now on 6mgs and my hands are almost pain free. But it has taken all year to get to this point.

It is hard to be in pain and think that the way to stop it is just to take more prednisolone. But in my case, I have found that even with the decreasing dose my symptoms have vastly improved. If you can stand it, then I wouldn't go for a big increase in your dose. Like the others who have advised you on this forum, try and go for a small increase and see what happens. In my experience most doctors and consultants will support you with enough medication if you are in too much pain.

I have coped with long term steroid use although my bones are apparently suffering as a result. To combat that, I do a lot of walking and swimming and so far have managed to avoid any fractures. I am 71 years old now. I think exercise is important for recovery and so on the days you feel you can, try and move, walk, swim etc.

Above all, don't despair. You will get better.

[Blodders2 in reply to reefswimmer]

Thank you for your positive and reassuring comments.