Major flare

[Abbey17]

I was so happy to reduce to 5mg and was fine for weeks, felt great. Then a major flare, wiped me out, succumbed to depression. A complete mess. GP put me up to 8mg for a week then 15. Been on 15 for 10 days now and still struggling, 1 good day then 2 bad. Nightmare as I’m self employed, orders backing up. I can’t understand why I had such a bad flare, no stress or illness, but because it came with depression this time (that’s new) I think I sunk down for a week before I did anything drastic (put myself up to 6mg - obviously not enough) Now I am as weak as a kitten, brain fog, pain. Normally the increase of steroids works more quickly but not this time. I expected that 15mg would have had more impact by now. I’ve never been on more than 20mg

[PMRpro Ambassador]

Unfortunately there seems to be one form of PMR that has relapses even while you are still on the same dose of pred you have been fine on. It happens to me from time to time and is probably due to an increase in the activity of the underlying autoimmune disorder that causes the symptoms.

Is your GP sure it is PMR? And do I assume that on the one good day you try to catch up? If so - you are probably overdoing it and need the 2 bad days to recover.

[Abbey17 in reply to PMRpro]

Thanks and yes he is sure it’s PMR and you are right about catching up but I am doing much shorter days so trying to pace myself. I’ve gone from full to part time but it’s very hard as I am self employed so a bit stuck really. I’m seeing him next week so will see what he says - I’ll ask if it could possibly be something else. I hadn’t thought of that.

[Predderman2020]

My (similar) flare, unresponsive, appears to be sparked by vaccination. T

[Abbey17 in reply to Predderman2020]

Well I did wonder myself but GP said no, not convinced he’s right though

[PMRpro Ambassador in reply to Abbey17]

A lot of us have had flares post vaccination, they lasted a few weeks or more in some cases

[Raewynne]

I have been noticeably more depressed as I am reducing an tired.I just try to get more rest.Dr won't do anything.

[Abbey17 in reply to Raewynne]

I’m so sorry to hear that ☹️. My doctor prescribed me anti depressants but the side effects were pretty scary so I’ve been taking Bach Flower remedies they really help me and I know I won’t become dependent on more medication. Hope you feel better soon.

[Raewynne]

Yes I use flower essences and other essential oils.I don't like side effects of yet more drugs.I had a problem with swallowing the other week.Lasted a couple of weeks.Quite scary but that has passed now too.

Prednisolone really messes with us .It's terrible that nothing else works for GCA.

[Abbey17 in reply to Raewynne]

Yes it is. It’s the weirdest horrible journey, stay strong.

[CarolF1312]

So sorry to hear about your flare. Like you I was sailing along on 5mg. feeling great as if I had my life back.Dropped down to 4.5mg and everything went down hill.

Refused to increase for several weeks believing I could manage but symptoms got steadily worse.

I'm now on 7mg. and thankfully I'm improving.🤞

I understand, depression can be a result of the PMR flare, and/or areduction in steroid. However, I think the disappointment of a backwards step in your recovery, really brings your mood down.

Sending hugs and wishing you luck in bringing the flare under control. X

[PMRpro Ambassador in reply to CarolF1312]

I think you have to look at it not as being a backward step but one of the steps in the process: you are looking for the lowest effective dose. To do that you DO have to overshoot to find the dose that ISN'T enough. Having identified that, you go back up to the previous dose where you were OK. Which is also why reducing in small steps is required - the dose that isn't enough may only be too low by 1/2mg - but if you reduced 2.5mg at a time you will have missed that,

[CarolF1312 in reply to PMRpro]

Thanks for the wise words PMR Pro. I know its wrong but can't help feeling this is a battle against my own body. I actually only dropped from 5mg to 4.5mg when I started to get symptoms of flare. I think my mistake was battling on thinking I could beat it into submission ( or remission 🤣) My mindset is not helped by Rheumy who thinks PMR burns out in 12 months and I should be off Pred !

I will try to be kinder to myself in future.

[PMRpro Ambassador in reply to CarolF1312]

There is NOTHING in the literature to suggest that PMR burns out in 12 months - except one recent study that found only 1 in 5 patients is off pred in under a year! That leaves a massive 80% who take longer! Even at 2 years it is only 1 in 3. And it had been said before that study that patients who got off pred in a year remained at a greater risk of relapse.

piglette often says there is no point fighting against PMR - it will always win!

[bunnymom in reply to CarolF1312]

Do be kind in your self talk. I’ve passed the 5 year mark and have just got to 4.5. Lowest ever. I’m staying at this dose for 2 months to give my body a chance to smooth out. Wishing you well today.

[Abbey17 in reply to bunnymom]

Thanks so much for this and hope you continue to feel well on 4.5 Best wishes XX

[CarolF1312 in reply to bunnymom]

Thanks Bunnymom I will try my best to be patient with this horrible condition and kind to myself. Great to hear that you've managed to get down to 4.5mg. Wish you well, with your onward journey.

[Abbey17 in reply to PMRpro]

Yes you are right, I think as many others probably that because I was told it would only last 2 years and still here 3 years on it was a sense of failure also. Thanks so much xx

[PMRpro Ambassador in reply to Abbey17]

I used to say quite often that the support forums have the job of clearing up behind the doctors who tell their patients they'll be off pred in a couple of years and then blame the patient when they aren't and get stroppy. The patients feels they have failed - in an impossible task - and seek online at last. We now are the living proof that PMR/GCA are rather different in real life - like a lot of things in medicine if the truth is told.

[Abbey17 in reply to PMRpro]

Yes spot on. And what would we do without you so thank you

[Abbey17 in reply to CarolF1312]

Thank you Carol I really appreciate that xx

[Raewynne]

Yes My Dr is of the belief that I should have been off pred in 12 months too.Luckily this is a relapse for me so I could stand my ground and reduce slowly .I am getting a bit of temporal pain for a few days and I'm wondering if I should increase a bit or hope that it will settle down .I have reduced from 14 to 13.5 .I take every 2nd day.Depression is an issue.My husband passed away last year so I know I am dealing with a lot of traumatic memories.

[pomeranion]

I'm sorry to hear about your loss. I too lost my husband of nearly 50 years last May. With the new mood swings and depression from the prednisolone dosage tapering I am sometimes so weepy and can't stop thinking about what might have been if he was still here.So many memories. Thank God for my two sons but they don't fully understand the overwhelming loneliness that overcomes me sometimes. I wish you well and pray someday

this to will pass.

[CarolF1312 in reply to pomeranion]

Sending love and a big hug 🤗