PMR flare?

[Kiwisufferer2019]

For the first time in about 2 years I successfully tapered down from 10 to 9.5 over 4 weeks, then week 5 just 9.5. I was feeling so good, then àbout 4 days ago, half way through week 6, sore neck and shoulders, sore stiff hands very sore stiff legs and thighs into buttocks. Painful to walk, sore from thighs into groin area, I've got an appointment with Rheumatologist on 10th June, and he told me in March he didn't want me to increase the dose, so I'll try and ride it out. Have taken a celebrix this afternoon, but that hasn't done any good. The last 2 mornings I've gone for gentle walk for about 35 mins, I need to try and get my fitness a little bit better, I'm not fanatical about it, but for my health sake I must get moving. Very tired and missing my man something terrible. I try and keep busy, but find it hard to get motivated. Sorry to ramble on, I hope you ladies are well(as can be expected). Do hope you have a good summer, ours was shocking, it never stopped raining. Still more rain than fine. Turning cooler but not really cold yet. Janis

[PMRpro Ambassador]

He may not want you to increase but what you describe is typical of the dose being just a tiny bit too low to manage the ongoing daily dose of inflammation - and if you DO stay at 9.5mg you run the risk of it building up again until the symptoms are as bad as at first.

It was 6 months after OH died that it hit me like a ton of bricks, I was already at 15mg, I needed even more to be able to function and even with tocilizumab it has taken me a year to taper to 6mg. I think it is too early for him to try to force you to go lower if you aren't ready.

[DorsetLady PMRGCAuk volunteer]

Ditto to what PMRpro has said - we have both lost our husbands whilst having PMR or GCA so know how bereavement hits when you are least expecting it.

Think your Rheumy needs to take that scenario onboard -and be a bit more sympathetic about your Pred dose. 🌸

[Kiwisufferer2019 in reply to DorsetLady]

Yes, and that all makes sense as I've been feeling a bit down the last couple of weeks, our 52nd wedding anniversary on 22nd May, it's all the firsts without Ted, it really hits you doesn't it.

[DorsetLady PMRGCAuk volunteer in reply to Kiwisufferer2019]

Yes it does….and as you say the first year is full of firsts, which are always difficult. It does get better over time, but there are always times when something brings you up short!

I’ve quoted this before on here -

my late hubby, once said to someone - “grief is like an open wound, at first it’s raw and hurts like hell. Over time the pain does lessen, and eventually you are left with a scar that is liveable with, but is always there to remind you of what went before”….

and almost ten years after his death, I can say he was right.

[Kiwisufferer2019 in reply to DorsetLady]

Yes I quite believe that, life will never be the same without them, this weekend is kings birthday weekend here, and we would have been at the beach together, regardless of the weather. It's all those things you miss.

[Nextoneplease in reply to DorsetLady]

Yourhubby was very wise DL - sending you hugs xx

[Nextoneplease in reply to Kiwisufferer2019]

Sending you gentle hugs Kiwisufferer, I hope you feel a bit better soon 🤗xx

[Kiwisufferer2019 in reply to Nextoneplease]

Thank you very much, I will be OK, and am getting used to my new life slowly.

[LozzaSandstrom in reply to Kiwisufferer2019]

Bless your heart. I am a firm believer that this bloody condition is down to stress and worry in your life, I squarely blame my children for all the crap they have put me through and I too have terrible pains in the groin and top of mostly one leg and yesterday I could hardly walk.

Tapering is a pain and we are doing it ourselves with. little help from the doctors and lots of help in here. I hope you get this nasty flare under control and that you are able to find your way through this,

Much love from me dear lady xx

[Kiwisufferer2019 in reply to LozzaSandstrom]

Thank you so much LozzaSandstrom it's so comforting to have so many caring people out there. Don't know what I would've done without the support of this forum the past 18 months or so. It just helps so much to get it off your chest to understanding people.

[Kiwisufferer2019 in reply to LozzaSandstrom]

🥰 thank you

[piglette]

Celebrex is an NSAID and it is not a good idea to mix it with steroids. Also painkillers really do not touch PMR, it is steroids or steroids!!

[Kiwisufferer2019 in reply to piglette]

Yes and that confirmed my suspicion that it is indeed a flare, when nothing else helps.

[Abbeynan82]

I have had repeated spells where I am asking dr for additional pain killers , which never help. I recently ended up in hospital with Covid and chest infection, pain in hips, for a month. Now home with carers and being kept on 15mg which is barely enough. I first realized I was on way too low a dose at my husbands funeral, where I was doped up to gunnels just to get through the day. Been flared and on the decline ever since. Hips so sore I cannot walk. All tests fine. I’m just trying to wait it out. Lowest dose ever was 7 mg. Only steroid helps. Also taking Lyrica and Oxycodone which are helping a bit. Hospital thought neurological twist to it all. CRP was 16, then 110, now 16 again. Where were we?

[PMRpro Ambassador in reply to Abbeynan82]

If you KNOW the painkillers aren't helping - why ask for them?

[Kiwisufferer2019 in reply to PMRpro]

I haven't asked for pain killers, just tried some I had on hand more to confirm my suspicion that I was indeed having a flare.

[PMRpro Ambassador in reply to Kiwisufferer2019]

My reply was to Abbeynan82 who said she asks for painkillers even though they do nothing. Every reply says who it is aimed at - you are the originator of the thread so are told of all replies.

[Kiwisufferer2019 in reply to PMRpro]

I did think that wasn't meant for me but it came through as a reply to my post. I know that if painkillers don't work on trying them once, no point in taking them again. Thank you for that.

[PMRpro Ambassador in reply to Kiwisufferer2019]

If you aren't sure - look at the top line of the box the reply is in. It says the name of the poster and who it is in reply to. You get told of every reply as you made the original post.

[Kiwisufferer2019 in reply to Abbeynan82]

So sorry to hear you have been so sick, it does sound like your dose is too low, the knowledgeable ladies on this forum are sure to advise you on that. My blood tests are usually within the normal range, but I will be interested to see what the next one is. Good luck getting it sorted.

[LozzaSandstrom in reply to Abbeynan82]

Oh thats so sad, and as I say further up here its brought on my stress in. my opinion so the absolute trauma of losing your husband is going to sent it into an ascent. Bless you