return of GCA

[2013mayo]

Hi everyone,

I’ve not been on the site for a long time as I thought I was better re GCA . I’ve recently , well for a good few months been very poorly with diverticulitis and severe chest infections, so not been in a right frame of mind to reply to many of you lovely people. My husband is very seriously ill, he’s been rushed to hospital for a very serious lung condition, he has an ongoing problem that can’t be cured, at its worst it causes loss of oxygen , his levels went down to the 70s, I called an ambulance. Anyway back to me, just lately I’ve been getting very bad headaches again, I did find it odd but never thought it was GCA, then I had one episode of double vision, again it didn’t click with me. Oh and my shoulders became very painful again, in I’ve been feeling very unwell, I thought it my chest infection and my husband being ill was causing it. I did tell the doc but he thought it was my chest infection. Well I became more poorly , I’ve still got the chest problem and abdo pain, I phoned another doc because I felt so ill, immediately he asked why I was on pred before, (I stopped taking them 3 months ago) . He said the GCA is back again go to A/E if it gets worse, plus’s I’ve still got my chest and the abdo pain .Phew, that’s enough.

[DorsetLady PMRGCAuk volunteer]

So sorry to hear all your news. .. and with the worry of your husband it really no wonder your GCA has resurfaced. Have you gone back on the Pred, and at what dose?

If doctor thought it might be GCA back then no good just saying ‘go to A&E if it gets worse’. They should be investigating and prescribing the necessary treatment.

[2013mayo in reply to DorsetLady]

Hi, he’s told me to take 5mg for now, I have started taking it 2 days before because I thought it would help my chest, on 5mg the headaches have improved and no double vision but Ive still got the painful shoulders and feeling dreadful, I’m not in a position to see anyone yet as my husband is in a critical way and I need to be there for him. Xx thank you for replying so quickly

[DorsetLady PMRGCAuk volunteer in reply to 2013mayo]

Ok -and I fully understand your situation with your husband -but I also know the consequences of putting others health before your own.

So please get things checked as soon as you can..best wishes to both of you 🌸

[SheffieldJane]

I am so sorry that you and your husband are going through such a challenging time. I agree with DL wholeheartedly and she knows. Like they say on an aeroplane “ please ensure that your own oxygen mask is secured before you try to help anyone else. Please have your own health investigated as a matter of priority. X

[2013mayo in reply to SheffieldJane]

I Know, but it’s so difficult , if I go to A/E you have to wait and wait, and then what if they admit me. My husband is so very ill, I can’t be in another ward can I ?

Xx

[PMRpro Ambassador in reply to 2013mayo]

But if you end up ill, you aren't much use anyway

[PMRpro Ambassador]

Never underestimate the effect very poorly husbands can have on PMR/GCA - DL and I both know about that. And you are likely to need a lot more than 5mg for safety since your original dx was GCA, Not least for the adrenal requirements - they will still be a bit wobbly only a few months after you thought you were done with pred.

And as SJ says - get yourself taken care of or there is now way you will take care of him. I can back that up 100%

[2013mayo in reply to PMRpro]

I know, my daughter is here tonight and wants to call a doc or go A/E.🤷‍♀️🤔

Xx

[PMRpro Ambassador in reply to 2013mayo]

I'm on her side ...

[SheffieldJane]

Please have the tests whilst your daughter deputises for you with her dad, explain the urgency.

[agingfeminist]

You have so much to cope with. Now try my trick...read what you have written about your condition as if it were written by someone elese...what advice would you give them..."Go to A and E and look after yourself!"

I used this trick when I thought that maybe, perhaps I was having a heart attack.

20 minutes later I had got myself to A and E (by taxi) and was being treated for a heart attack.

hoping you and your husband soon get on the the road to improving ...

[2013mayo in reply to agingfeminist]

🥰

[Niblick]

You definitely need to get your inflammatory markers checked with blood tests. and of course with GCA there is always a risk to sight . Go to A&E urgently. Best wishes

[2013mayo in reply to Niblick]

🥰

[Miacaro45]

🙏🏻🙏🏻😍

[2013mayo in reply to Miacaro45]

🥰

[potterylady]

That's a lot of health problems to deal with all around between you and your husband. I'm so sorry you are going through this awful time. I'm glad you reached out to the wise caring group here. I'm sure you will be doing much better with the advise you get here. I like what aging feminist said. We seem to take better care of others than we do ourselves. Sending love, peace and healing

[2013mayo in reply to potterylady]

Very true, I’ve probably made myself so poorly worrying about my husband. I am sorting things out for me now, I’ve Ben to hospital and doctors and they are trying sort things out, ct scan and so on.x

[Grammy80]

Sending lots of good thoughts and hoping there is progress for you....💞