Flare advice

[Tahiri]

I was down to .5 mg of Prednisolone and my brother died 4 days ago. I’ve had severely tender headache since. I know I can increase from advice given on this forum , and drop down to just above last dose a few days later, but how much should I increase by please. I forget although I’ve had previous flares at higher doses ? Also my left eye is blurry and I’m in panic mode. I had to reset my password as I was locked out. Hope everyone is well. Tahiri

I mean half a mg incase the .5 isn’t clear.

[PMRpro Ambassador]

I'm so sorry - big hugs xxxx Was it sudden or had he been ill? I'm not surprised you are in panic mode.

The simple approach to a flare is add 5mg for 7-10 days before dropping back. I think you are likely to need it not just because of a potential flare but also because of adrenal function which may be still very wobbly.

If that doesn't sort the headache, please get medical advice asap.

[Tahiri in reply to PMRpro]

Thank you so much . He hadn’t been in touch although he lives locally , but his daughter advised other family members in New Zealand that he had died , but didn’t inform me, although I thought we were friendly. I can’t understand this , and got extremely upset to hear from abroad. Thank you again - I’d only increased to 2mg. Will take 3 more now. Families !,

[PMRpro Ambassador in reply to Tahiri]

Indeed - but that isn't very nice in any respect.

[Tahiri in reply to PMRpro]

it did come as a shock. I know she was grieving, but phoning a nephew abroad. I thought she really liked me, but I can still be a bit naive sometimes.

[Ginny52 in reply to Tahiri]

I’m sure he thought he’d get better and didn’t want you to worry. This happened with my own brother who I actually was angry with, and after he died on the other side of the world I was sorry, but it wouldn’t have made any difference.

[DorsetLady PMRGCAuk volunteer]

Usual advice contained in this link -

healthunlocked.com/pmrgcauk...

So sorry to hear about your brother - and maybe don’t drop down too low once you’ve got control of flare-the next few weeks/months are going to be difficult for you. ..so you may well need the extra to get you through. So perhaps to 2mg for a while -and then gauge how things are….

… and yes do monitor your eye/headache -and seek advice asap…

[Tahiri in reply to DorsetLady]

Thank you . Yes , I’ll be extremely careful of ongoing stress. Sound advice . It’s disappointing, but things come out of the blue , and I lost a sister pre Christmas, so was just about coping with that. Two sisters and two brothers within 4 years is a great deal for anyone to handle , but I was reducing steadily and was congratulating myself on coping so unexpectedly well. I’ve had a couple of flares at higher amounts but thought I’d be fine on such a low dose. It’s a strange feeling being the last one standing ( barely).

[DorsetLady PMRGCAuk volunteer in reply to Tahiri]

Feel for you -been there -as have many of us -and it’s not easy… No matter what dose you are on.

Take care 🌸

[Bcol]

Nothing to add the Pred dose advice but just wanted to my condolences. It must be a really difficult time for you. Big hugs and take care.

[Jackoh]

Would echo Bcol’s comments. A big hug and take care. 💐

[Tahiri]

Thank you to everyone who replied.I’m on my second dose of 5 mg and am making an urgent appointment with the Optician .

[DorsetLady PMRGCAuk volunteer in reply to Tahiri]

Good -please let us know how you get on.

[PMRpro Ambassador in reply to Tahiri]

You have seen the MECS/UES info? Just in case the opticians doesn't "get" the urgency!

[Louisa1840]

Huge hugs Tahiri from one who has been through the mill in the last few months with 4 family members dying in as many months and including a beautiful grandson who took his own life. I have flared ever since. PMR does not like stress!

Be very gentle with yourself and know you are loved and supported by all on this forum.

[Tahiri in reply to Louisa1840]

Losing a grandson under these circumstances is unimaginable. My heart goes out to you. Remember energy never dies. I’m absolutely certain of that. 💕🌺

[Louisa1840 in reply to Tahiri]

I agree. Max used to garden for me and he is all around me. I talk to him every day and love him wherever he may be.....

[Tahiri in reply to Louisa1840]

He is in another dimension, invisible to most of us , but you will feel him with you. Love and caring xxx

[Louisa1840 in reply to Tahiri]

He is. I do . Thank you.X

[Tahiri in reply to Louisa1840]

I didn’t mention that I lost my grandson Luke on Christmas Eve 16 years ago . xxx

[Louisa1840 in reply to Tahiri]

I am so sorry to hear this Tahiri. These precious boys live in our 💕

[LemonZest11]

Sympathy and big hugs to you from Downunder. Terrible shock and situation for you but you're not alone. The advice from the experts here always helps. 🩵

[Wallysma]

I also have an interesting family. My brother had parkinsonz and told no one. We live far apart but even relatives did not know until he died. It's crazy. Anyway I found that after the shock.kind of dissipated I was left with a lovely warm feeling towards him....based on when we were kids. It kind of just.happened....it is like we have reconnected in a way. And then I would feel his presence. But you need to be super kind to yourself and take care as you deal with your loss. I think there are a lot of us who are last ones standing....even if it is with a cane. It is a strange feeling being orphaned in your mid- 60's.

I wish you peace of mind and heart.

[Tahiri]

Yes - you put your finger on it. I feel orphaned, abandoned and more or less bereft.However, the headache is fractionally better. Onwards and upwards .xx

[Purplecrow]

Tahiri, i am so sorry for your losses. I am sending a virtual hug and unconditional love to you. Our family relationships are sometimes muddy and messy, with resolutions beyond our grasp. Know we care and mourn with you. Jerri

[Tahiri in reply to Purplecrow]

Thank you.