Flaring and struggling to taper

[Oboes22]

I've ha PMR since March 2020 and began on 15mg, then 12.5, then 10 then 1mg reduction per day, then flared at 4.5. This has been my third flare and my GP suggested going to 6mg, if no relief then 7mg and stay there for 4 weeks before tapering again. My instinct made me go to 7mg which I have done. I've been on 7mg for 7 days now and although I have relief in my arms/shoulders/thighs I still have quite a bit of pain in my groin a pelvis area. I have been taking 400 mg ibuprofen twice a day for the past few days but only once today but obviously feel this is not really appropriate to continue. My GP is very supportive but he was reluctant to suggest I go higher and wants to see me again in 2 months. He said if necessary he would have to refer me to a Rheumatologist at our local hospital. I have been referred to her previously but had never seen her and I felt very neglected. She just told me over the phone that I would have to take methotrexate. It's not what I want to do. My question is - should I continue on 7mg for another week or increase further but to what and for how long. Thank you for any advice... Pam

[DorsetLady PMRGCAuk volunteer]

hi,

this link contains the usual procedure for dealing with a flare - so you may need to go up a little more as the increase to 7mg hasn’t seemed to work - but you may not have been on it quite long enough. You can stay at increased dose for 14 days without impinging on you reducing again once flare is under control. So I would say up to 9 or 9.5mg for another week. You should then be able to drop back down to 5mg…either in one go, or if you feel a bit unsure, try 2 steps… first to 7mg for 5 days, then to 5mg.

healthunlocked.com/pmrgcauk...

Once you have things under control, and back to 5mg, stay there for 3-4 weeks before tapering again…and if you’re not already using a slower taper regime, then try that.

To be honest at any dose under 5mg, I don’t see the point in adding in MTX…. A slower tapering plan should suffice…and you’re only 3 years into treatment..PMR can last a lot longer than that.

[Oboes22 in reply to DorsetLady]

Thank you DorsertLady an I understand all you say - I'm just so scared to go up to 9mg, in case that doesn't have any effect and then what do I do - I suppose feeling stressed and miserable about it all is not helping. Thank you again.... Pam

[DorsetLady PMRGCAuk volunteer in reply to Oboes22]

No feeling stressed is not helping, but it’s complete understandable.

However 7mg doesn’t sound quite enough…and as you’ve been on it a week, another few days [7 at most] of anothe 1 or 2mg isn’t that horrendous. If it works then great..and if it doesn’t you can still drop back down to 5mg. But you won’t know until you try.

[Oboes22 in reply to DorsetLady]

Thank you so much DorsetLady. I know what you are saying is what I was really expecting. I will increase to 9mg as you suggest. Yes I do the DSNS tapering but it just seems 5mg is my level for the moment. Pam

[Nextoneplease]

Hi Oboes 😊

It’s so confusing isn’t it? Especially when you feel rotten….the last thing you want to be doing is thinking about dosages and times, you just want to feel better. But…..needs must…..tapering and flares appear for many of us to be part of this condition 🤦‍♀️

I agree with DorsetLady’s suggestions. I think you need to knock the inflammation out with a short, sharp dose of 8-9mg for a few days (no more)and then drop down ideally in two steps, to 7mg and then back to 5mg. Stay there for a few weeks before you start another taper.

Just checking, you are using a slow taper and dropping by 0.5mg each time?

Good luck Oboes, you’ll get there 🤗

Keep in touch xx

[Oboes22 in reply to Nextoneplease]

Thank you Nextoneplease, I will increase as you and others are suggesting and I was expecting I would have to do that. It’s a long scary journey and at times I’m not very brave. I will let you know how it goes. Pam

[PMRpro Ambassador]

The standard advice for dealing with a flare due to overshooting the dose you need is to add 5mg to the dose at which you flared: in your case, go to 9.5mg so it might as well be 10mg. Stay there for a week - if the pain is still there you canstay a bit longer, up to 10-14 days it is still OK to go straight back to the dose ABOVE where you flared where last felt good. And stay there for a while.

Have you flared at a similar dose each time? If so, that is your body telling you you have arrived at your destination. You are NOT reducing relentlessly to zero, you are seeking the lowest effective dose. the lowest dose that gives the same level of relief as the starting dose did. You should NEVER feel worse at the end of a taper than you did at the beginning, at least in terms of PMR symptoms. You may find other aches and pain return, especially OA or age.

There is no point being at too low a dose because that way you get the downsides of pred with none of the benefits to balance them out - and if 9mg doesn't work all it is saying is your PMR has flared badly and you need more. So there is no point worrying about that happening,

[Nextoneplease in reply to PMRpro]

Bravo PMRpro 👏👏👏 x

[Oboes22 in reply to PMRpro]

Thank you PMRpro. You are all saying the same thing and I realise I should go over and above and will start that tomorrow. Thank you again. Pam

[Pixix in reply to PMRpro]

But, surely, reducing by ‘1mg a day’ is likely to cause a flare? As you know, I’m ‘rushing to get off pred’, but onky by 0.5 - 1.0mg per month, nit per day, or week! S x

[PMRpro Ambassador in reply to Pixix]

Well yes it would - but usually people mean they are dropping 1mg at a time. You might be right - Oboes22 you weren't dropping that fast were you?

[Oboes22 in reply to PMRpro]

Thank you and certainly not ripping 1mg at a time but only .5mg for 6 weeks and I was using the DSNS method which has always been good. Perhaps I need to stay there for ever... I thought the pain I was experiencing was due to my OA in my spine an that it was all referred pain. My GP put me right. I took 9mg this morning and will follow your previous advice about reducing from that. Thank you again for your advice and concern.

[Laineydee]

hi Oboes 22, I have just read your posting and your situation seems to mirror mine almost exactly, although my PMR began a year later than yours. Similar flare pattern too and my GP had just had the same conversation about referral to a rheumatologist with mention of methotrexate, which I am also reluctant to contemplate. We are the same age too. So I am just writing to again confirm what we all know about the helpfulness of this site. There is always someone in the same boat and shared advice reaches out to everyone. Good luck Oboes 22. I shall now be following the advice given to you.

[Oboes22 in reply to Laineydee]

Thank you Laineydee, It's an awful journey to be on. I took 9mg today an will stay on that for 7 days then try dropping to 7.5 and then maybe taper using DSNS. I didn't recognise the flare for weeks thinking it was OA problems in my back and referred pain everywhere else. So I probably have a lot of inflammation to clear. Thank goodness we have this site and I always appreciate the support and concern from others. Take care

[Charlie1boy]

Hi,

Did you really mean you reduced by 1mg per day below 10mg? Because, if you did do that, then it is no wonder you flared!

The conventional advice is to stay at each new level for at least four weeks, if not longer. Also, as someone else has said, I feel you should consider tapering at a half mg when below 10mg, and definitely when below 5mg.

Good luck, and I do hope you get this flare sorted very soon.

Paddy

[Pixix in reply to Charlie1boy]

great minds think alike! S x

[Charlie1boy in reply to Pixix]

👍x

[Oboes22 in reply to Charlie1boy]

Thanks Paddy, I've been using the DSNS method to taper for a couple of years and I seem to flare whenever I get to 5. am presuming its 'my' level at the moment.