Is this a flare ?

[lindtbunnynut]

Hi all.

I don't post on here often but I read lots of other posts so know you all know so much more about this than me. I have had PMR for about 4 years and apart from a couple of minor flares have managed to reduce to 3 mg pred which is the lowest I seem to be able to get to.

About 2 months ago my sister passed away unexpectedly and I literally seemed to fall apart both physically and mentally. I was treated for anxiety with Propranolol and seemed to have every pain and symptom that was going.

Fortunately , mentally at least, I seem to be getting through it ( I have stopped taking the propranolol now ) but recently have had lower back pain and hip/pelvic pain similar to the pain I had when I was initially diagnosed. I increased the pred to 5mg for a few days and then up to 7mg for the last 3 days but it doesn't seem to have helped. It is worse later in the day than in the morning. .

My big question is could this be a flare, could it just be back pain caused by something else or am I imagining the whole thing due to the anxiety thing ?

Should I up the pred a bit more to see what happens or just take pain killers to see if it goes away ?

Any advice would be appreciated thank you.

[SheffieldJane]

An unexpected, sudden bereavement is like a blow to the body. I would definitely follow the full flare procedure.Remind yourself of the process on FAQs. I am so sorry about this, it must an awful shock.

[DavidMF]

I'd definitely try the pain killers, if it doesn't work it's more likely to be a flare.

[123-go]

I am so sorry for your loss.

I agree with SheffieldJane that you should treat this as a flare especially in view of the fact that your current symptoms match your initial ones.

Lots of info to be found in DorsetLady’s FAQs -healthunlocked.com/pmrgcauk...

[agingfeminist]

I am so sorry for your sad loss...

Try painkillers (not ibuprofen) first. Then if no improvement try increasing the steroids...what time of day do you take your steroids? 2 a.m. is recommended (I find that midnight works fine for me) Do you have a helpful GP you can discuss this with? all good wishes to you

[DorsetLady PMRGCAuk volunteer]

My sincere condolences on the loss of your sister.🌸

123-go has kindly linked my post re flare - so won’t repeat… but agree it does sound like it is - especially with same symptom as pre diagnosis.

You need an extra dose of 5mg above previous dose - any less is not enough and probably for the full 14 days as well. So suggest up to 8mg today - and count the 14 days from first dose of 5mg.

Plus it does sound as if 3mg is your limit for now, so when you drop back down - go to 3.5mg or 4mg.. you will still need that little bit extra to deal with the bereavement process.

And also consider some help for that, you may not think you require it, but we all deal with bereavement differently - and it may hit you seemingly out of the blue in the months to come.

[PMRpro Ambassador]

I'm so sorry to hear about your sister - and the loss of a sibling is a very sobering event in terms of one's own mortality so it will have hit very hard. Hugs.

Either of the first two thoughts could apply. My husband died a couple of years ago, not unexpectedly so not the shock effect that hit you in addition, but a few months later I literally fell apart with back pain and a massive flare.

To be honest though, I'm not entirely convinced about the diagnosis of anxiety - I wouldn't be surprised if adrenal insufficiency was underlying that as poor adrenal function can cause that and also wouldn't be able to respond to the massive shock you experienced and which isn't over in a few days so even if you were doing OK on the low pred dose normally, the extra stress may have knocked you for six.

I thought I was dealing with the whole thing pretty well - it was expected and in the end a blessed relief - but I did have bereavement counselling which did help a lot. Take any help offered to you, and if none is offered, seek it out.

[lindtbunnynut]

Thank you all for your replies. I have started on 8mg today and will see if that helps for the next week.

I'm a member of our local amateur operatic society and until last weekend was out twice a week at rehearsals which seemed to keep my mind off everythiong for a while but now it's over I seem to have too much time to things about things.

I have one more question.

I took omeprazole with the pred right from the start but stopped taking it when I got down to 3 mg as I didn't feel I needed it anymore. Should I take it again while I'm on a higher dose or just do without ? I don't seem to have any indigestion symptoms like heartburn etc but I do seem to get a lot of wind trapped which makes me burp quite a bit.

[PMRpro Ambassador in reply to lindtbunnynut]

Did you just stop it cold turkey or taper off?

[lindtbunnynut in reply to PMRpro]

I took it every other day for a couple of weeks then stopped.

[PMRpro Ambassador in reply to lindtbunnynut]

Did the wind start after you stopped it or was it a problem before?

[lindtbunnynut in reply to PMRpro]

I didn't notice it as much before.

[PMRpro Ambassador in reply to lindtbunnynut]

Strange. Does anything make the wind worse?

[lindtbunnynut in reply to PMRpro]

Not really. I've changed my diet over the last few weeks. Am eating much more fruit and vegetables and less bad stuff. I'm eating smaller meals as well.

[PMRpro Ambassador in reply to lindtbunnynut]

Ah - if you suddenly change to eating lots of fruit an veg it is a lot more fibre and your gut takes time to adjust! That could be the reason.

[lindtbunnynut in reply to PMRpro]

Yew I guess it could be that . I took the 8mg today and it's felt a bit better. Unfortunately have just taken my blood pressure and it's quite high, Don't know if it's upping the pred or stopping the propranolol. Can't win.

[PMRpro Ambassador in reply to lindtbunnynut]

Propanolol will have made your BP go down - not sure if there is a rebound effect if you stop it. I'd mention it to the GP - is it very high?

[lindtbunnynut in reply to PMRpro]

158/90. It was a lot higher when my Sister passed away but it gradually came down to around 135/80. I think I'll start the propranolol again until I can get to see a doctor later in the week.

[PMRpro Ambassador in reply to lindtbunnynut]

Possibly a bit of everything - and something to ask the GP.

[lindtbunnynut in reply to PMRpro]

It's only 10mg of propranolol 3 times a day but it did seem to help. I just don't want to be on it longer than necessary . I'll try and get a doctors appointment this week but fingers crossed for that one. Thank you for talking to me.

[PMRpro Ambassador in reply to lindtbunnynut]

We always talk if someone needs it. The shock will have raised your BP - maybe they should have thought of that rather than the anxiety, that is what propranolol is often used for anyway

[daisylazy]

I am so very sorry for your loss. My younger sister died during covid and I am still heartbroken. You have got good advice already so all I can say is take care of yourself. X

[lindtbunnynut in reply to daisylazy]

Thank you. it's all been a bit of a rough ride and it just seems however I try to help myself these things just keep on happening.

I'm sorry for your loss too and I hope things will start getting easier for you . Take care.