Hello after a forced absence.

[Dydee]

I stopped getting email updates unexpectedly from PMRGCAuk and at the same time my husband started having health issues so most of my time was spent researching HIS symptoms and trying to make sense of it all. We are back in a waiting pattern till his 5 day EEG finally comes through so thought I would get caught up here.

After 3 1/2 years on Prednisone for PMR (first tapering attempt failed at 7 1/2mg) I have finally gotten down to 2 1/2, very carefully. I do get suspicious shoulder aches occasionally and pray it's just that I did something my muscles aren't used to doing. LOL My problem is, I know that stress brought this on once I diagnosed the problem (and doc agreed) and then did a ton of research, and also joined this group. I don't know what I would have done without it. But now my husband is going through some tough stuff, has horrible mood swings and anger issues and is having strange spells his Neuro. thinks are seizures. I am not sure if I should continue to taper or go into a holding pattern while the stress is so high. I'm also wondering if I must continue at this low dose to taper as slowly as I have been. Just so afraid of a flare. 😬

I hope everyone has a wonderful Christmas!!

[SheffieldJane]

Good to see you here again Dydee, even though it means you are not all better. Even though you have shown great resiliance in the past, I wouldn’t be tapering under your current stress and uncertainty. I hope the outcomes have a positive solution. Stick with us.

[Dydee in reply to SheffieldJane]

I will for sure. This group has helped me so much.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your husband. Definitely no tapering for immediate future… and you may need to increase slightly to get you through these difficult times… if so, don’t be frightened to do that. Better than a flare.

[Dydee in reply to DorsetLady]

So far so good. He has been struggling for a year now, a pacemaker last April solved part of his problems but he is having seizure like symptoms now. My research points to the Vagus Nerve but takes so long to get into a doc and his neurologist doesn't diagnose it.

[DorsetLady PMRGCAuk volunteer in reply to Dydee]

If you think it’s the vagus nerve why doesn’t that come understand neurologists- who would he need to see about that ? Not something I’m familiar with, nor with the US medical system about from what I’ve learned from reading comments on this forum.

Do hope he can get an appointment soon, the stress won’t be helping you either.

[PMRpro Ambassador]

Good to see you back - HU does that to people every so often but if you whinge at Support they sometimes sort it. I also found that something got unchecked on my settings that I hadn't done so it is always worth a look there.

Absolutely no more tapering until things settle down and there is no shame or failure in going up a bit if you are struggling. Both DL and I have been there - and it really isn't worth struggling any more than you probably are anyway, Do hope they can sort something out for him - the mental changes you are experiencing with him are so difficult to deal with.

[Dydee in reply to PMRpro]

Still not getting email notifications so late getting back to you. Thank you for your advice. I will stay in a holding pattern for now. I guess I also better check into my settings. LOL

[DorsetLady PMRGCAuk volunteer in reply to Dydee]

Maybe have a read through this - and if not working after that then report to HU support desk -

healthunlocked.com/pmrgcauk...

[Dydee in reply to DorsetLady]

Thank you!! I checked my preferences on this site for emailed notifications and all is good. It is also not in my email spam folder but will see if I can tweek that somehow. LOL

[DorsetLady PMRGCAuk volunteer in reply to Dydee]

Okay.. well if all else fails, then nag HU… probably one of their regular glitches…🙈

[PMRpro Ambassador in reply to Dydee]

And HU need a bit of nagging by others - otherwise they think it is just we two!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well to be fair, it usually is… but everyone can join in…the more the merrier.😊

[DogAgilityObsessed in reply to DorsetLady]

and PMRpro - to be fair the two of you (plus one or two others) do an extremely good job ensuring the charity's considered, informed and carefully thought out advice is communicated well. If we wanted crack-pot ideas we could stick with Facebook!

Everyone here should consider supporting the charity (by becoming a member at the very least - it's only £15 pa) if at all possible.

[Dydee in reply to DorsetLady]

LOL

[Dydee in reply to PMRpro]

LOL

[Cannes4me]

Hi Dydee.I would stay as you are, the stress you are under could cause a flare, you have done so well so far, give yourself a break and see what happens with your husband, that is what I would do, it's up to you of course, I hope things go well for both of you, I wish you both a merry xmas and a flare free new year.

[Dydee in reply to Cannes4me]

Thank you so much and hope you have a Merry Christmas as well. And of course, a flare free forever. LOL

[Dydee in reply to Cannes4me]

Thank you and Merry Christmas and a healthy New Year to you too.