GCA: permanent or what?

[AlamedaCounty]

Following my previous post, it would be great if people could say which condition relates to their question.

Mine is: GCA/temporal arteritis permanent or will it improve and disappear, or will it get worse?

[DorsetLady PMRGCAuk volunteer]

GCA -like PMR is self limiting - but no one can say exactly how long it will last - although around 4 -5 years is about average.

Treated with the correct medication it shouldn’t get worse.. and the vast majority of people go into remission -but do not stay around on here to tell the tale. There are a few exceptions  SnazzyD  jinasc and me for example - I’ve been in remission since 2016, jinasc longer, SnazzyD slightly less.

In your previous post I gave links -please have a look at them….

[PMRpro Ambassador in reply to DorsetLady]

Since WHEN??????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Oops -in garden centre on iPhone -screen too small -will amend.. 😳🤣😂

[Gimme in reply to DorsetLady]

Now I am dying to know what the typo was.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Sorry .. 2928 or similar.... 😲 Viking gloves [required when on Chariot} impeding fingers... 😼

[Gimme in reply to DorsetLady]

lol

[SheffieldJane in reply to DorsetLady]

They are alive and well though. 😉

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Always….it’s the brain that rubbish🤦🏻‍♀️

[AlamedaCounty in reply to DorsetLady]

Many thanks again for your response. I have looked at your (and various) links to try to find out more.

[DorsetLady PMRGCAuk volunteer in reply to AlamedaCounty]

Good, but anything you cannot find - just ask…

[Blearyeyed]

I am happy to say I HAD GCA, it's been in remission for 15 months . I developed it earlier the " norm" at 48.I had about three flares during my treatment but I think this was probably because my other conditions meant I needed a very fast taper, often too fast.

The symptoms were never worse during flares than they had been when GCA was diagnosed.

I didn't develop PMR, which I was very relieved about because I already had a number of conditions that cause me body pain.

I felt very fortunate to have found this forum and had the chance to get the guidance that was available on here from other patients with experience of dealing with the condition and side effects of the medication.

I think following the advice on self care and tapering I received here did make a big difference to how well I coped with GCA and how smooth my recovery was.

Good luck on your recovery , Bee

[AlamedaCounty in reply to Blearyeyed]

Many thanks. I have a great GP which does help.

[Francesbarbara]

My husband had GCA and fortunately felt he was back to normal in just under 2 years with no repeat. That is five years ago. Keep fingers crossed for you.

[Bluey-1 in reply to Francesbarbara]

Good news about your husband. Lovely to hear such a positive story for GCA.

[AlamedaCounty in reply to Francesbarbara]

Many thanks and good luck for your husband's continuing good health.

[67Blue]

I think my GCA part settled down nicely in well under two years but have to wait till September (that will be 2 years 9 months) to get the all clear from Glaucoma having taken drops till end of June , but am still having the odd effects of adrenal function / lack of from time to time, a day out Monday made me feel like I had gone backwards by about 7 months. I just couldn't get home and to bed quick enough. That was a shock.

[phebamom]

Sorry to say I am one of the sad stories. GCA at least ten years, PMR over 20. One reason for long time span is a lack of a proper diagnosis for years. I was told I needed to seek mental health therapy by more than one doctor. Fibromyalgia, menopause, you name it, I was labeled with it. One doctor even wrote 4F on my chart, fat, female, fecund, over forty. Thank goodness that mind set is dying out. I was tested for HIV/AIDS a total of 7 times because I ran a 101 degree fever for five months. No one thought to test my SED rate. The sooner GCA is diagnosed, the higher the probability of remission. I had to completely change the city where I was being treated. The new doctors immediately sent me to Mayo in Rochester, MN, where I was diagnosed after 7 trips driving across two states over the course of 3 months. But, they figured it out. Count yourself fortunate and be optimistic. Most people who are diagnosed in a timely manner go into remission with the illness.

[AlamedaCounty in reply to phebamom]

So sorry to hear your story and do hope things get better for you.