Newly diagnose GCA

[essujay]

Hi, I am Sue, and I have learned such a lot from this forum over the last 7- 8 years when my husband was diagnosed with GCA . We were living in France and because of the 2heads are better than 1 in a language risk situation I was present for all my husband's consultations and have tried to help him master the ups and downs and flares and up and down Pred doses

I have been feeling poorly for a few months, aches ,pains , sinus pain ,sore head , balance probs etc. I thought it was old age, 83, and not coping .Then when jaw pain set in I i got a docs apot...

Guess what ? After examination and CT Scan GCA was diagnosed 3 weeks !

I am was prescribed 60 mg Prednisolone for 2 weeks and and then told to reduce to the 50mg I am on now for a further 2 weeks then to go down to 40mg..

Pred cleared 95% of pain within 3 days and I feels so much better but I know I have got a long haul in front of me.

Instinctively I am not keen on taking too many tablets, I have negotiated not taking omeprazole until I feel done sort digestive disturbance. I am not too keen on taking the Alen Acid stuff either unless pushed. I really prefer to try as much Life Style changes as possible specially cos I am aware how much our normal daily 3mile walking routine has been abandoned and my confirt eating has got out of hand..

Sorry this is so lengthy I think I am just looking for some one to hold my hand a bit as I adjust to aĺ of this..and answers to all sorts of little questions.. can i get few LFT tests for GCA ? Should I have a Steroid Card ??

Thank you for being theŕ e, I gave relied on you before, didn't reaĺy expect it to be instead of Hubbie this time

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome in your own right….not that you particularly want to I guess. But at least you do have some idea of what it’s all about.

Do you know if you have any bone density issues…might be worth asking for DEXA scan if you haven’t had one in the last few years, then you’ll have a baseline regarding AA… if you aren’t osteopenic then a VitD/Calcium should be enough to protect bones. This should be prescribed at outset, and we suggest also taking a VitK2 supple, helps the calcium go to the right places.

Yes you should have steroid card, GP should provide, please speak to surgery.

By all means get a pack of LFTs, have you had all your vaccines, you are not more likely to get covid because you have GCA, but if you do get it, you may struggle more…so just be sensible about where you go, what you do.

We have introduced a FAQs section, so have a look at that - easy to find either below first post on this page or on right, but have added link -

healthunlocked.com/pmrgcauk...

Maybe start with this one - just as a reminder - and we will hold your hand, be sure of that-

healthunlocked.com/pmrgcauk...

[essujay in reply to DorsetLady]

Thank you very much Dorset Lady ! I must settle my butterfly brain down and and go steadily thru the information and advice theŕe is here..I had did have a Dexa scan for some reason before Covid had started anywhere . I cant see the result details but it was fine at the time so I just stopped thinking about it.

I do have some Vit D calcium tablets with my Pred prescription and I 'll make sure I take them. I haven't heard about VitK2 supplement , that sounds a bonus..

I feel reassured and calmer having got involved here again.Thank you.

Only fair to say that I am lucky with the GP who has sort of taken me over at our practice. He explains what he knows and if theŕe is anything he is isn't sure about he rings the Rheumy dept at the hospital then rings me back with clarification- rang 3 times one day.. He ought to look at this forum !

Thank you again

[cycli]

What an absolute bu**er. So sorry you have joined this club but welcome none the less. Good luck on the journey and try to stay positive.

[essujay in reply to cycli]

Thank you cycli ! Feeling calmer and reassured this evening and as Dorset Lady suggested I am going to read thru the info that is already here again.

Last couple of days my head has bèen all over the place, I haven't been able to decide whether the panic buzzers going off all day are part of the GCA symptoms, or a side effect of the Pred, or reaction to dropping from 60mg to 50mg and my Hubbie can't understand why I don't sit down and stop tidying up !!

Life ain't boring !

Thanks for your encouragement !

[PMRpro Ambassador]

Welcome. We're here to hold your hand! Don't worry - we haven't changed, except to get better

DL's given the basics, digest them and come back with any questions.

[essujay in reply to PMRpro]

Thank you !I am feeling calmer this evening and glad to be back.

Think it's about 4-5 years since I posted looking for advice for my Hubbie and as I am reading thru things I can see that crikey the advice and the info available has really evolved- pity it's not Required Reading in GP practices...

[PMRpro Ambassador in reply to essujay]

We think so too!!!

[cycli]

Suggest OE Dic. or Websters for a couple in there. Not too polite in our cultural understanding but common enough swear words. How are you getting on ?

[cycli]

You've had a dodgy ride with your use of pred. and am so glad it is over for you and you can think of getting stronger now. It will be a long hard road but do persevere. As for surgery I have always thought that once done there is no going back. Here they seem to want to do procedures rather than seek alternatives first. I may have a wrong view of this and no experience of the sort of conditions which require such a solution so my view should not carry much weight. When suffering the choices and decisions are so much more difficult. Unfortunately, sometimes surgery is the only solution, but it is trusting them to reliably inform one of all options in order to make the decision I have issues with. That is the key point as I see it. Being well informed and then able to make the right decision. A difficult call at any stage and I wish you all the best. I'm starting reducing again and will meet my new rheumy this Monday. He is well thought of so I have hopes. Down to 27.5mg and feeling ok. so far thanks.

[Cobalt2sister]

Hi....just want to say, here's another hand to hold! Hang in there and good luck!

[essujay in reply to Cobalt2sister]

Thanks for that!

[Poshdog]

Quality of hand holding here is simply the best x

[Sharitone]

Hi Essujay. So lightning does strike twice! As for LFTs I think you qualify for government ones, If so, it is important that you request them, because they are the only ones which allow you to report a positive result. My latest letter from the hospital on the subject says,' you won't be automatically sent tests but you can request them on GOV.UK or by calling 119 if you don't have any.'

Steroid cards should also be available from your pharmacy.

Take it easy!🙂

[essujay in reply to Sharitone]

Thanks Sharitone- I will go to the Gov site on my own behalf, I didn't think GCA entitled you to them .. My husband has had some because he now has Nephrotic Syndrome and was on what was the Clinically Vulnerable list but we both need to be testing pretty regularly now.What a pair of pill pushers we have become !

[Sharitone]

I think it's more to do with the medication you're on, than just having GCA. (Just!🥴)

[orangemax]

I'm a yank with a Brit son-in-law. You might want to try a couple of g's. And whatever you do, don't say fa--y pack! It's a "bum bag" here!😅