Caring for wife with GCA

[Austin7]

I am caring for my wife with GCA she is not computer literate so I am trying to understand what our problems are Diagnosed 19 July about 6 weeks ago by local doctor and started on prednisolone 60 for 2 days then saw rheum specialist at hospital who reduced to 40 after seeing blood tests. Stiff neck headache and sore head reduced and temple veins not so sticking out. Eyesight clinic says no pressure in the eyes. Following their plan we reduced to 30 two weeks ago. My wife now has severe side effects of anxiety confusion and depression. Just had blood test again and due to see the doctor and reduce to 20 next week. Any advice please as we are in our mid 70s and find this quite difficult.

[PMRpro Ambassador]

Welcome to the club no-one wants to be a member of! I won't dive in as my particular lived expertise is of PMR but DorsetLady will be around later and give you a link to her potted introduction to GCA.

Your problems are YOUR problems - if you have any questions just ask on a new thread and you will get answers or suggestions to help. Every patient has a different experience and many would claim not to have problems - but none of us can anticipate how you and your wife will fare. You have been very lucky in having an on-the-ball GP, many are not so well off.

For the meantime - this isn't the end of the world and it will get better. In a year you will look back and realise how far you have come. I often tell people this and they obviously snort quietly and mutter "what does she know". Even the most sceptical come back and admit it is quite right!

[Hidden]

Hello Austin & Good Lady Wife 🌷

Welcome to the Forum, like PMRPRO I’m a PMR’er too but Dorset Lady will be along shortly, she is very much our Resident Expert on GCA & will have lots of information for you.

Kind Regards

MrsN

[Hidden]

I am one of those who didn't believe so can confirm pmrpro's claim.

I hope your wife feels better soon. Meanwhile look after yourself too. Best wishes. 🌻

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

As PMRpro suggested - you might like to have a look at this link -

healthunlocked.com/pmrgcauk...

It does cover both PMR and GCA because they very often go hand in hand - and the treatment is very similar - Prednisolone - the only major variance is the starting dose.

Unfortunately the affects you describe your wife suffering from are from the high doses of steroids - and like most things they affect some patients more than others. If they are really severe then you need to speak to GP about them - there is help out there - but if you don’t ask, you don’t get. However they will reduce as she lessens her dose of the drug. But that needs to be done sensibly and very often a lot slower than your “plan” indicates.

You might find the attached a bit daunting at first glance, but please print it off, and read, and reread at leisure. Then come back with any specific questions - there is always someone around to help.

Give your wife my best wishes - and tell her it’s not as bad as she thinks it is - it just takes a little while to come to terms with and realise that.

[HeronNS]

I'd just add that it's imperative she remain at a high enough dose for long enough to be sure that the danger to eyesight posed by GCA is dealt with. It can take months for the inflammation to be properly controlled and unfortunately the blood tests are only a guide. When the inflammatory markers are down that really only means that pred is doing its job, not that the disease activity has gone away. That will take longer.

As for the emotional and psychological effects of the meication, they can be hard to deal with, but as the others have said they will lessen both as her body adapts to the medication and as the dose is (very gradually) tapered. It is wonderful she has such a supportive partner. Do what you can to keep life as normal as you can. We do tend to "become" our illness for a while, and it's good to venture out for a while, nothing strenuous, not for too long, but to remember that there is more to life. And do look after yourself too. All the best.

[HeronNS]

Just remembered these stories, which your wife might enjoy hearing and which will help you both to understand what "pacing" is all about when dealing with a chronic disease:

rarainbow.wordpress.com/201...

[Devoid]

Hi I have found the fatigue unbelievable so try and make sure she is resting enough. I need to actually lie down in the afternoon, just sitting doesn’t seem to be enough.also make sure she is keeping well hydrated, I’m a new comer to all this and at 59 finding it all very daunting, but take hope from all on here who say it will improve

[scats]

You've come to the right place Austin, there some amazingly caring people here, always willing to help. All best wishes to you both.

[PenelopeVita-Finzi]

I am sure you would find Dr Kate Gilbert’s book: PMG and GCA, a Survivors’ Guide very helpful. It is available on Amazon.

Good luck!