Benefits of knowing your illness/condition/disease to help others as well as yourself

[123-go]

It’s about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and haven’t, until now, felt ready to share his story on the forum.

—————- ————— ————— ————-

My OH complained one evening that he ‘couldn’t see’ out of the corner of his eye-just a tiny blind spot. I said we should keep an eye 😉 on that. Next day he said that he had pain in his jaw while chewing food and of course the previous day’s tinkling alarm bells now clanged with me insisting that he ring his optician for an urgent appointment. He went along the next day and the enhanced scan (OCT) showed a swelling on the optic nerve. The opthalmologist said he would ring the hospital that evening and that OH would hear from Opthalmology very soon. Early next morning the hospital rapid access clinic rang to say, “Come now!” so off we went for a barrage of tests. After almost 4 hours we were sent home with an appointment for the next day in Rheumatology where an ultrasound scan confirmed Giant Cell Arteritis and a prescription for 60mg prednisolone issued. At a later appointment the consultant confirmed that recognition of symptoms and prompt action, ie, prednisolone, had prevented the spread of inflammation and further loss of vision. The blind spot at the corner of the eye is permanent but could, of course, have been life-changing.

With grateful thanks for the expert advice that we can all learn from and act on, the support and the humour that shows we are not robots. 👏👏👏👏👏

[DorsetLady PMRGCAuk volunteer]

So sorry to hear about your husband…. And well done every one for swinging into action and doing what they should - but especially you with your insider knowledge. 😊.

It it’s any consolation, even if you’d acted that first evening, the outcome would be the same, damage already done… just be be thankful [which I know you are] that nothing more occurred overnight.

Tell your husband he’s in good company - whether he wants to be, is another matter. 😉

[123-go in reply to DorsetLady]

😆 I do tell him and no, he doesn’t want to be but he’s a bit of whinger sometimes. However, he couldn’t have done more for me during the four months prior to my PMR diagnosis and Pred and I’ll be eternally grateful. I’m rather like Miss Hannigan in ‘Annie’- hard as nails, eg, “You can’t eat that!”….Get your shoes on- we’re going for a walk”….”Drink more water!” 😂😂

[PMRpro Ambassador]

Well done you! Better than some highly paid and trained medics!

Will he come and join us or continue to benefit vicariously?

[123-go in reply to PMRpro]

We have spoken about it but not for now; secretly, he trusts me. He’s quite involved in aspects of the community at 82- PPG, PCN, school governor for umpteen years, goes into school to hear children read…they call him ‘Grandad’ 😆.

[cycli]

So glad you both are diagnosed and handling it. I'm still astounded that I somehow avoided any loss. I knew nothing of this condition and struggled for years like PMRpro. Hope your OH comes on with his own perspective some time. Keep hopeful for remission.

[SheffieldJane]

Oh well done you! Perfect response. What a shock with you having PMR/GCA/LVV as well. You are one of the very helpful posters on here. Your quick action saved his sight, I would feel justifiably proud of myself. ⭐️

[123-go in reply to SheffieldJane]

I didn’t want to be right for obvious reasons but very relieved regardless. We bumped into (unfortunate term) the specialist nurse on our way out of the clinic and her response was, “Oh, no!” It is what it is and being as positive as possible will keep us going.

[Charlie1boy]

Didn’t you do well. Just helps to show what an excellent Forum this is.

[123-go in reply to Charlie1boy]

Exactly! We are so fortunate.

[piglette]

It is so good to hear your husband’s sight was saved by people with common sense.

[123-go in reply to piglette]

A blessing!

[powerwalk]

Well done you. Hope he's ok. Best wishes.

[123-go in reply to powerwalk]

Thank you, powerwalk.

[Poshdog]

Adding my well done to the others. And 'secret trust' - big achievements xx

[Lclmlbls]

Sorry to hear you both have these difficult conditions to cope with. I’m sure everyone who visits this site (and has hopefully paid to be a member) is so grateful to the knowledgeable people who give their time and expertise freely. I don’t know how I would have coped without this invaluable resource.

[strawclutching]

When you think how rare GCA is meant to be, how unlucky (if that's a suitable word) that it happened to the both of you. But on the other hand how lucky you had insider knowledge and your Miss Hannigan personality. Well done.😊

[Reclus]

well done! thanks for the clear explanation of symtoms. i had pain on the right side of my face and found that my jaw was sore and i woke with spasms where i bit my tongue. went to the gp (before covid and the present arrangements re trying to get appointments) was told it was arthritis before being prescribed co-codimal three days later burst intestine and two months in intensive care still recovering 5 years later thank goodness for this forum and prednisolone.

[123-go in reply to Reclus]

Oh, my goodness! I imagine no investigations were carried out and the diagnosis plucked out of the air??

Best wishes for a full recovery.

[Reclus in reply to 123-go]

thanks for your best wishes no investigations were carried out and in fact in the scramble to save me they cut through a ureter which meant i came home with a colostomy and neuphrostomy but heh ho i guess that's life i'm here and functioning so that's all that matters now. just wish i could get off the pred but each time i go below 8mgs i flare up again.

[123-go in reply to Reclus]

That’s shocking, Reclus! You are more forgiving than I am!

So sorry you are struggling to reduce below 8mg. Have you tried reducing by half a mg? You can buy a pill cutter (for small pills) from chemist or online and cut your 1mg pill in two.

[Reclus in reply to 123-go]

i didn't know i could buy a pill cutter so i'll do that thanks.best wishes

[DorsetLady PMRGCAuk volunteer in reply to Reclus]

Plenty about -this is good brand, online or in local pharmacy …

Pill cutter

[123-go in reply to Reclus]

It took me several tries to avoid crushing the 1mg pills but less heavy handedness did the trick.

[123-go]

Thank you. Many on the forum would have had the same reaction to those symptoms and understand why prompt action is necessary.

Interestingly, two people have asked me, “Is it catching?”

I did a quick search for any correlation in PMR/GCA between husband and wife and found the following article (published more than 12 years ago in the US):

ncbi.nlm.nih.gov/pmc/articl...

My opinion is that it’s completely coincidental 🙂.

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

From your link-

A genetic relation between husband and wife is unlikely, but therefore cannot be definitely excluded. However, PMR in a married couple argues against genetic background, and this observation proposes an environmental trigger to the disease.

Environmental would only apply if you both come from same area originally….which in some cases could be true… but as you say more likely ‘completely coincidental’…. Don’t think there are that many instances on here….

[Hisue]

Glad they’re now using ultrasound now instead of biopsy of the temporal arteries to diagnose GCA.

[123-go in reply to Hisue]

Not all hospitals sadly. The equipment is very costly and the training to use it and interpret results lengthy. But yes, accurate and non-invasive.

[PMRpro Ambassador in reply to 123-go]

Leeds is training suitable HCPs to do the u/s technique in a day-long course. Some members of the forum were subjects and I think someone wrote about it. I was part of the focus groups discussing the information leaflet when they were doing the feasability study.

[123-go in reply to PMRpro]

That’s great! I’ve attended several ultrasound workshops as a ‘body’ for doctors from far and near practising the technique and happy to help.

[Hisue in reply to 123-go]

I acquired MRSA with boils & pustules all over my face (while in the hospital for GCA) & they wanted to do 2 temporal biopsies near the oozing infections, while on 60mg IV.

I said, “NO- too near my brain”.

[123-go]

Couldn’t make it up, could you? Good for you.