Flaring

[Storm-boy]

Hi everyone

I wonder if anyone can help me. I have learned so much from this forum and absolutely nothing from my rheumatologist

I have had PMR for 12 months now and really been fumbling around in the dark with it not understanding how to control and deal with it. Even though my mother had it for 11 years. Or maybe she just thought she did because maybe she was only withdrawing when she tried to reduce rather than flaring. She lived in a remote country town.

I have been tapering at .5 mg every fortnight. Got down to 7mg three weeks ago and within 5 days began to get a lot of pain. I thought it was withdrawal so preserved on 7mg until it became unbearable (about 10 days). Went up to 8mg but still painful so went to 10. All good on 10. Stayed there for 3 days then went to 9. Too painful back at 10.

Where should I go now. I was so happy to get to 7.5 with no pain.

[SheffieldJane]

Hello Storm-boy and welcome to the site. All the Brits are asleep and won’t see your post until morning. In order to get useful replies, now and in the future, could you please fill in your bio that includes your diagnosis, how long you’ve had the disease, what meds you are on, what tapering regime you use etc. This will help us to help you more effectively. Lots of detail is great! Invest in a good pill cutter. If you haven’t already. You seem to be doing pretty well without guidance though - I see now that you’ve had PMR for 12 months. Have you had a look at FAQs on here. It’s pretty useful. What did your doctors say about duration of the disease? I suspect shorter than the actual facts suggest. You’ve probably been reducing too fast and not leaving enough time between drops. The aim is to find the lowest possible dose that relieves your symptoms, too fast and you may miss it. Your reductions should be no more than 10% of your dose. Others will see your post in a few hours. I will look for your post again and the additional detail on your bio page. Give as much detail as you can. If this doesn’t make a lot of sense, I just woke up and it’s 2 am. X No worries though. I often do.

[Storm-boy in reply to SheffieldJane]

Thanks so much SheffieldJane. Pill cutter is a great idea. The doctor told me it would last an average of 3 years. I’ve only been on prednisone but the rheumatologist wanted me to start on methotrexate but I decided I would persevere with prednisone as my side effects aren’t too severeI was not having much success on 10mg so doctor suggested splitting it to 5 morning and 5 evening. This made a huge difference and have been tapering .5 a fortnight since April

[SheffieldJane in reply to Storm-boy]

Hello again!I am glad your split dose is working for you. I would rest there for a few weeks.

The average time for PMR is almost 6 years. Your poor mum. It sounds as if she never had it properly managed. Looking back (before GCA) I led a pretty productive life with PMR alone. There is a lot of information in FAQs about Methotrexate. I have swerved it so far. It’s the side effects like weight gain, diabetes 2 , raised blood pressure and osteoporosis you have to be alert for with Pred. Ensure you take calcium/ vit D supplements and try to avoid the carbs. Have a bone density scan every couple of years and always protect your digestive system. Things I have learned 6 years plus in.

Good luck, stick with us.

[Storm-boy in reply to SheffieldJane]

Thank you so much. Invaluable support

[Storm-boy in reply to Storm-boy]

Thanks Sheffield Jane. How do I protect my digestive system?

[SheffieldJane in reply to Storm-boy]

Never take Pred on an empty stomach and consider stomach protection meds. like Omeprazole or Lansoprazole. I only used Greek yoghurt and was fine for years but latterly I have developed diverticulitis. I am sure that the caustic nature of Pred was a factor.

[Storm-boy in reply to SheffieldJane]

Oh. Thank you. When I started pred I would have 2 inches of cucumber but gave that away. Will start that again.

[PMRpro Ambassador in reply to Storm-boy]

You really need a bit more than cucumber ...

[SheffieldJane in reply to Storm-boy]

Do you know something we don’t? Cucumber doesn’t sound very coating which is the aim.

[piglette]

I think you need to slow down a bit. I found it better to reduce by 0.5mg every four weeks. Also with a flare I would increase by 5mg for a week or so to really get the PMR under control then drop back again usually in two steps

[Storm-boy in reply to piglette]

Thank you Piglette (I’m sure you’re not). When you dropped back again usually in two steps. How long between the drops?Thank you so much

[piglette in reply to Storm-boy]

Just a few days, perhaps a week, if I felt OK.

[Bcol]

Morning Storm-Boy, apologies , missed this one earlier as unusually for the UK I'm normally around earlyish. As already mentioned, you seem to be doing well, but it does appear that now your tapering times are a little quick. I would suggest that you go back up to the dose where you were last comfortable and stay there for at least couple of weeks to get everything under control again. Then start a slower taper downwards. (examples and lots of other information in the FAQ's).I use a 0.5mg reduction every five weeks and even then extend that if I need to. Its not a rush to get to zero at all costs but to get to the level where pain and movement is under control and quality of life is as good as it can be. Then tapering slowly whilst ensuring that the above continues. Adrenals will/may also come into play here, again lots of information in the FAQ's.

[Storm-boy in reply to Bcol]

Thanks you so much Bcol. Great information. Where do I find FAQ on the site

[Bcol in reply to Storm-boy]

Hi Storm_Boy. Think the link below should take you there.

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer in reply to Storm-boy]

Actually this is the more uptodate version of FAQs -

healthunlocked.com/pmrgcauk...

And this gives info on dealing with a flare - healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

PS agree with PMRPro’s comments below…

[PMRpro Ambassador]

You are NEVER reducing relentlessly to zero - you are titrating your dose to find the lowest effective dose for YOU. That is the lowest dose that gives the same result as the starting dose did. You had reached it I suspect - but tried to go lower and didn't take the hint when your body said hang on a bit ...

Personally I think that reducing every 2 weeks is too fast - it isn't long enough to know if the new dose is enough and when the symptoms reappear at the next drop you think that was the one when really it was 1mg ago that you crossed the line. Under 10mg 1mg a month is quite a bit, as you get lower it goes above the 10% that experts recommend.

You are hovering at the waterline - and it takes very little extra inflammation to cause symptoms. What we often suggest, based on top PMR expert rheumy advice, is adding 5mg to dose where you flared - so for you, go to 12mg - for up to a week to 10 days. Then you should be able to drop straight back to the last dose where you were good - which I'd say was probably 8mg rather than 7.5mg. Then stay at 8mg for a month to be sure it is enough. But first you have to springclean and get a bit of leeway with the dust!!

[Storm-boy in reply to PMRpro]

Thank you PMRpro. I’m so grateful for all this wonderful information.

[tangocharlie]

Some great explanations there. Sounds like 10 is your Happy place, for the moment anyway. The Quick and Kirwan method of reducing dosing, which is sadly not widely known about or practiced widely by other rheumatologists, keeps people at 10mg for a year and they claim very high treatment success rates for PMR. I see in this month's Newswire magazine Vanessa Quick has become more involved in the charity so I'm hoping their theories will be more researched, developed and promulgated

[Storm-boy in reply to tangocharlie]

Thank you tangocharlie. I’m so grateful for this info

[PMR2011]

Hi Storm-boy, welcome to the forum. You mention figuring out Pred withdrawal vs flare of PMR. There is also information on that topic in the site. Generally if your symptoms appear within 1-2 days of the reduction then ease it could be Pred withdrawal. If the symptoms appear after a few days and don’t ease or get worse it’s likely the disease and you’d need to increase again. Great advice on managing a flare and tapering going forward has been given already. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to PMR2011]

Linked it yesterday….