Another flare

[SueMacD]

Hi all, this is my second post. I read the forum every day and I am so thankful for all the great advice (which I don’t get from ny GP or Rheumatologist). I have PMR/GCA, diagnosed July 2017. Got down to 7.5 of Prednisolone in March, had a flare and Rheumatologist put dose up to 15mg. I got down to 9mg but couldn’t seem to get any lower. I have had pains in my left temple on and off for weeks, shoulder pains and sometimes thigh/hip pains, along with sensitive teeth on same side as temporal pain. I had a good eye test and an OCT scan of eyes, dental check up was clear, but ESR has gone up from 13 to 31. My Rheumatologist said that if I had a second flare he would prescribe me Methotrexate, but I am not keen. I stayed on 9mg for six weeks hoping for improvement but no such luck, two days ago I increased the Prednisolone to 14mg, hoping to reduce back to 9mg in a few days. I am feeling slightly better, still have a slight twinge in left temple (no jaw pain, neck pain or blurry eyesight) and shoulders less stiff. Do you think I left the flare carry on for too long before increasing the Prednisolone to have any success with this method? My hope is to drop down to 9mg again in a few days and then do the Dead Slow method from then on. Thanks for listening, I would be very grateful for any advice.

[DorsetLady PMRGCAuk volunteer]

You may have caught it in time, but it would probably be sensible to stay at 14mg for a little longer than ‘a few days’. Then drop back down to 9mg in two or three steps rather than in one! It is possible to do one step, but as this is your 2nd flare it might be sensible to go a little slower this time.

As you were only diagnosed in July last year (not sure of starting dose) your Rheumy is pushing you too quickly I think. Never took MTX, so can’t advise, but not sure it’s always the answer that Rheumies think it is!

Good luck

[SueMacD in reply to DorsetLady]

Thanks DorsetLady, I will do just that, fingers crossed. I started on 60mg July 2017 so agree I was advised to come down too quickly, I know better now from all the excellent advice on the forum. I live in Dorset so hope to come along to the next meeting. It would be good to meet you.

[DorsetLady PMRGCAuk volunteer in reply to SueMacD]

That would be good, it’s in December - with Christmas lunch.

If you contact Deirdre at [e-mail] she make sure you’re included in the emails etc.

[CT-5012]

Sound advice from DL. I had to taper from 10mg in half mg steps using DSNS down this week to 8.5 yay success. Little things. 😂

[PMRpro Ambassador]

It doesn't matter HOW you try to reduce - NOTHING will get you past the minimum dose you need to manage the daily new lot of inflammation. You are not reducing relentlessly to zero - you will need a certain amount of pred as long as the underlying cause of the symptoms we call PMR is active. If you try to force past that dose you will have a return of symptoms and if you persist you will end up with a full blown flare - and I suspect you were on the way.

If you started on 60mg in June 2017 and had GCA that is now reappearing as "just" PMR you have actually done extremely well to get down to that in a year and I have no idea why your rheumy wants to stick you on mtx. As someone has already said, it doesn't do all they think it does! And in GCA there is evidence that it works best when introduced in the first month and later decisions don't help a lot. I don't think he was pushing you too quickly down to 15 - I think he is now.

This group's approach

rcpe.ac.uk/sites/default/fi...

would have taken 8 months to get you to 10mg and then kept you at 10mg for a year. That means you would currently be about half way through the 10mg period. Where I suspect you wouldn't be flaring. A flare always sets you back - so to keep repeating the concept and expecting a different result is a bit crackers.

[SueMacD in reply to PMRpro]

Thanks for your response PMRpro. I am starting to think that I haven’t increased enough to get on top of this flare, after three days on 14mg I was hoping to feel so much better but I don’t. I think it’s the “twinge” in my left temple and sensitive teeth in that area that’s worrying me most. It’s difficult to know how much to increase by. I do hope that I don’t find myself back at square one and on 60mgs. Forgot to mention in earlier post that my GP surgery sent me to walk-in eye clinic a few weeks ago because of temporal pain and raised blood pressure. I saw a Triage nurse who then went to speak to the doctor, she came back with a message from him telling me to go back to my GP. The nurse told me to take this as reassurance. So unhelpful. I am so grateful for this forum as I don’t feel like I am getting help from any of the health professionals.

[PMRpro Ambassador in reply to SueMacD]

I think you are very probably right. You've been hatching this - and the last attempt to reduce just made it break cover. But a sensible approach to reduction now, slowly and only after all is settled should mean that mtx is not required. My experience of it was not pleasant - although many people do take it without problems. Whether it does anything useful is another matter.

[Marilyn1959]

Crikey Sue! 60mgs to 7.5mgs in eight months??????? No wonder you are having significant flares! I was diagnosed with just PMR and have taken fourteen months to get to 7.5mgs from a significantly lower starting dose than you of 15mgs. I may be a tortoise but fingers crossed I have not had a flare. Think tortoise or snail. Wish you well.