Another Flare

[Deneez99]

Thought I would share my update. Diagnosed in Oct 2020 have had several flares and as a result had to step back to a higher dose. I always use the 5wk taper.Anyway I have finally realised what brings on these flares and it's stress !! My latest flare this weekend was on wk 4 of a taper from 1mg to 1/2mg. This flare is particularly bad and in my hips and upper legs making it difficult to stand from sitting. My husband is due to go into Hospital next week for a triple heart by-pass and I am struggling to find accommodation near the hospital. It's school holidays and the cost of hotel rooms have doubled if not trebled. So as a result of the stress I have to increase my dose of pred yet again. Any advise on how to do this please........Thanks Denise

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your husband - been there -but long before GCA and yes it is stressful

This link contains advice for dealing with flare -but when you come back down you will need extra to get you through the next few weeks so suggest you don’t drop any lower than 2mg or 2.5mg. If fact you may need more but get through this flare first and then rethink

healthunlocked.com/pmrgcauk...

Hope the bypass is successful… 🌸

[Deneez99 in reply to DorsetLady]

Thank you so much I value your advice I will do my best xx

[DorsetLady PMRGCAuk volunteer in reply to Deneez99]

Remember you have to look after yourself as well.. otherwise you’re no good in helping your husband through this.

So take what dose you need to be able to function properly -and don’t put on a brave face -if you need help then ask…

The time for you to get back to your taper will come -a few weeks here or there doesn’t really matter a jot in the great scheme of things.. especially on such low doses and adrenals needing help.

[DorsetLady PMRGCAuk volunteer in reply to Deneez99]

Just seen PMRpro's comments and reminded me - my hubby was in King's College Hospital in London for a couple of weeks, I was in Dorset working full-time .. so I worked Mon, Wed and Fri and went to London on train- Tues, Thurs & Sat (2 & half hrs each way) for afternoon visit. My son lived & worked in London, so went in the evenings, my daughter had 3 month old baby and lived West Surrey so went in on the middle Sunday.

I didn't have GCA then, but it was still stressful and shattering - and on the middle Saturday England were playing in the 1996 Euro's at Wembley! Bonkers!

[Deneez99 in reply to DorsetLady]

Sounds stressful 😫 I just feel I need to be close by. Xx

[DorsetLady PMRGCAuk volunteer in reply to Deneez99]

So did I, but it wasn't possible, so next best thing... but as I said I had no health issues to contend with...

Best of luck whatever way you go...

[PMRpro Ambassador]

DL has advised - and don't be in a hurry afterwards to get back to your current taper. Stress ALWAYS has an effect! You are at a really low dose so don't worry about the failed taper.

My husband had major surgery in a cardiac unit in Edinburgh and we had young teenagers - I had to stay at home 60 miles away. In fact, the unit restricted visiting on op day and also post-op which was quite handy! And my mother had her bypass surgery in Glasgow 80 miles away so visiting was difficult there too. However - neither of them were very enthusiastic about visitors at all. My mother enjoyed her week in the heart unit with all the others who had had the same procedure, doing their rehab together, and then they were all discharged straight home. I don't think you should stress about being there all the time - though I know you want to be there.

[Deneez99 in reply to PMRpro]

Thank you for your advice xx

[Bcol]

Nothing to to the advice, just to wish your husband all the best with the heart op. 🫂

[Deneez99 in reply to Bcol]

Thank you so much xx

[Alliekat65]

I hope all goes well for your husband.I will let those who know ALOT more than I to answer you x