Is this a flare or something else?

[Tiggy70]

Hi, I’m almost three years in with this awful disease (PMR) and still can’t figure it out. I began a Pred reduction from 9.5 to 9mg on 25 April using DL’s reduction plan. It was going well for a month then I had a few days of aching in my arms and shoulders. I was travelling back from a holiday at the time and put it down to that. Things improved when I got home so I continued on 9mg. For the past 10 days I’ve been having daily episodes of aching in my shoulders, neck and arms (bilateral). I’ll be fine one minute then suddenly I feel it coming on. Sometimes it goes off quickly within 10 minutes but other times it’s been lasting for over an hour and has reduced me to tears. Paracetamol doesn’t seem to help. The past 2 weeks have been very stressful for me (breast cancer scare - thankfully all ok after a mammogram) I’ve just got over a cold and I’ve been dealing with an infected cut on my lower leg.

My query is should I treat this as a flare and up my Pred by 5mg for a few days and then drop to 9.5 where I was comfortable? This does feel different to other flares I have experienced in that the pain comes and goes with no discernible pattern. Is this another symptom/pattern of PMR where the aching comes and goes? I’ve been waking around 5.00 am every morning for the past week feeling really rough (?IL-6).

I would appreciate your advice as to how to proceed with this, thankyou, Tiggy70.

[PMRpro Ambassador]

I would certainly try adding 5mg for at least a few days and see if it makes a difference. If it doesn't you can go back to 9.5mg, wait until live calms down and try again.

Try keeping a diary of when it happens and what you were doing beforehand - is there a speciifc activity linked with it?

[Tiggy70 in reply to PMRpro]

Thanks. I have kept a diary since August 2020 and find it useful to look back on my progress (or lack of it!). It’s a bit depressing to look back 12 months and see that I was on less Pred then than I am today. The aching I’m getting at the moment doesn’t seem to follow any pattern. I have been pottering around the house and garden doing jobs but nothing strenuous. Last night it came on around 9.45 when I’d been resting for a few hours. My arms do ache when I try to lift them above shoulder height for more than a few seconds.

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

When comparing this year to last year’s Pred doses -are you more active now than you were then? You certainly seem to have had a more stressful time…

[Tiggy70 in reply to DorsetLady]

I’m no more active than I was last year and if anything a little less active as I had a fall in mid March and I’m still having physiotherapy for a pulled/torn tendon below my right buttock. I did a stupid thing over Christmas 2022/New Year as I underdosed my Pred whilst away in the US and when I thought I was taking 2 fives each day I was taking actually taking 2 ones. I didn’t discover my error for over three weeks as I was using pre-prepared dosette boxes. I was very sick and didn’t know why! Despite having two shoulder surgeries in Sept and November 2022 I do feel I’m not coping with stress very well this year. The lowest dose I’ve tried since starting with PMR is 8mg. Rheumatology made me stay on 8 for 7 weeks in 2021 despite the fact that I was flaring! I really didn’t want to become a yo-yo er but that seems to be where I’m at😖

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

The debacle over Christmas certainly won’t have helped -such a pity, but theses things happen.

Fingers crossed you can get things back under control-and begin to feel better in yourself -that does make a big difference. 🌸

[Tiggy70 in reply to DorsetLady]

🤞thank you🌸

[PMRpro Ambassador in reply to Tiggy70]

Think you maybe need to discuss it with a doctor - obviously your GP since the rheumy seems a tad intransigent.

Don't rule out the trial of MTX entirely - for some it does make a real difference and the only way to find out is to try it. If it makes you unwell you can say no, he can't force you to take it.

[Thiago1396 in reply to PMRpro]

”Don't rule out the trial of MTX entirely”

What is MTX?

[Tiggy70 in reply to Thiago1396]

MTX is the abbreviation for Methotrexate, a steroid sparing drug. In the past it was used to treat cancer. It has side effects as does almost every drug and can upset the gut. I already have IBS so I’m reluctant to try it. It can take up to three months before any benefit is felt.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro…

[Tiggy70 in reply to DorsetLady]

Thank you🌸

[Croft9232]

Hi Tiggy 70, just a thought. May I ask if you have OA? As I read of your shoulder operations,.

If you do then could it be that you may need any particular meds you are taking to help with your OA. looking at.

I too find it difficult to know which pains are what, OA in me say, has advanced a lot in the past 4 years that I have had PMR. My Rheumie said last week that he felt my PMR was still active and wants me to stay at 4 mg until I see him again, plus X-rays showed new OA sites, foot and hands in particular.

It’s difficult isn’t it ? I , like Pro and others think seeing Rod Hughes will help clear the muddy waters.Let us know how you get on.

Regards M.

[Tiggy70 in reply to Croft9232]

Hi, thanks for replying. I do have OA in my hips, spine, hands and shoulders but as yet I’ve not had to take any medication for it. My shoulder surgeries were to repair torn tendons after a fall in November 21. I did have bone spurs pressing on a tendon which were shaved during the surgery. I’m already taking 11 prescribed medications daily and not keen to add any more. I’ve been considering lately whether I should try and see Rod Hughes. It’s so difficult to gauge whether I should up the Pred dose at this point 🌸

[tempusfugi]

Hi Tiggy70, I am sorry to hear of your predicament and suffering. It's all so complicated, this PMR. I just wanted to say that I am in a similar place to you (though, of course there are differences too). I have twice gone down to 8 mg but have been pushed up again because of pain in hands, wrists, arms and shoulders. The pain doesn't feel like the original PMR. Methotrexate has been suggested by Rheumy but I am reluctant to go down that road because of other drugs that I take. It's difficult when you are being pushed to do something that you don't feel is right for you. Do let us know how you get on.

[Tiggy70 in reply to tempusfugi]

Hi, thanks for your reply. Yes we do seem to be following a similar pattern with this disease. I just feel I’m making progress when something happens to set me back. Let’s hope we can both make some good progress soon🌸

[Bachfugue]

Hi Tiggy

I have very similar symptoms. Diagnosed PMR since 2019 so a year longer than you. Now down to 6mg and v v slowly decreasing to 5.5mg, The front higher arm /shoulder pain is unpleasant. It varies in intensity. All else fine. I get that it might be another flare but also open to the idea that I’m putting too much strain when lifting things (travelling /gardening though not in excess) on Pred induced weakening muscles,

I plan on seeing an osteopath v soon for a second opinion. I had frozen shoulders about twenty years ago on both sides. That cleared naturally, one after the other, So maybe some weakness or related to historical inflammation in the area ….

[Tiggy70 in reply to Bachfugue]

Hi Bachfugue,

It’s miserable isn’t it! I don’t know what to do for the best really. I’m tempted to increase my Pred as I want to feel better but at the same time don’t want to do it unnecessarily if it’s not a flare and caused by something else. I keep thinking I’ll give it another day or two to improve but know from past experience that isn’t a good tactic if it’s a flare. I hope you get sorted out very soon 🌸

[Bachfugue in reply to Tiggy70]

Thanks Tiggy,

Seems we’re in the same boa! Let’s touch base soon on developments. If I have no improvement in a few days Im going to up my dose. It’s taken a year to get from 8-6mg!