How long does GCA last?

[nallufl24]

When I started on this journey the rheumatologist never told me how long I would be treated. He made it sound so easy. I assumed that after 6 months I would be pretty much ok. After joining this group I was stunned to learn how long some of you were treated especially those with PMR. I know there is no timetable and we are all so different. I’m ok with how long it takes, I’m just so tired of not feeling myself. Of course COVID has made things even more difficult because I feel so isolated. I keep myself busy at home. I also talk often with friends and family on the phone but I often feel so alone.

[jinasc]

I know what you mean and agree that Covid has meant it is more difficult to handle.

However all auto-immune illnesses, and that includes PMR & GCA, come when they want and go when they want - there is no cure currently. Progress is being made and more has been done in the last 15 years.

They are complicated as l for some reason your your body turning on itself.

Yes, GCA for 5 years however it does get better to handle it once you have accepted that you have limited control.

I was so angry that my Mother had both PMR & GCA over 21 years previously and then I developed GCA and found out there was no difference to the treatment - so I got out of my pram.

I have sent you a pm.

[DorsetLady PMRGCAuk volunteer]

Flippant answer - how long is a piece of string?

Slight more serious - no one can tell, but average is around 4 years... mine longer, but that was because it took so long to diagnosis. Once on treatment about 4 and half years.

[prunus in reply to DorsetLady]

I wish it was only four and a half years! Mine has already lasted nine since the original diagnosis. I do however have a disabled OH with many problems and is in and out of hospital.

[DorsetLady PMRGCAuk volunteer in reply to prunus]

Stress obviously doesn’t help, mine was nearer 6 years but 4,5 on steroids.Do you have PMR as well, sure that prolongs it .

[prunus in reply to DorsetLady]

Not that has been diagnosed - but I sometimes wonder if I have a bit.

[DorsetLady PMRGCAuk volunteer in reply to prunus]

Could do…

[PMRpro Ambassador]

I do know people through and off pred in 2 years, with both. One who had had GCA then went on to develop PMR about 3 years later which seemed rather bad luck! I would say that the vast majority of GCA patients are off pred in 4, max. 5 years. Some of that time is waiting for adrenal function to perk up again and that can be a tough time because of the associated fatigue.

Covid has made everything more difficult for most people - I have to admit it has helped me in the last 2 years while my husband was ill because it meant being unable to go anywhere like everyone else didn't make me feel I was missing things.

[prunus in reply to PMRpro]

I have come to the conclusion it is dependant to a large extent on stress levels in my case. It is now nine years since the original diagnosis and I am still glad to take predisolone.

[PMRpro Ambassador in reply to prunus]

Couldn't agree more - but you, like me, have had a bit on your plate. I intend to write a bit about stress and PMR in the future.

[prunus in reply to PMRpro]

Yes from June 'til now has had problems. It has been very stressful at times.

[Kendrew]

Please try not to feel too despondent. It can be a bit of a shock when you're diagnosed and then suddenly realise there is no real quick fix. We have a systemic illness that will definitely impact on our life but it isn't the end of life!

To live with and manage the condition in the most effective way possible it's important to educate yourself as much as you can about both your condition and the medication you're on. You'll then be in the best possible position to make sensible and appropriate decisions.

There will always be a period of adjustment after diagnosis and this can often be a time of uncertainty and fear.

We all rely and depend on our own individual networks of support but during recent times, the pandemic has prevented us from accessing many of these in the ways we've been used to.... long periods of isolation, no f2f consultations, medical professionals inaccessible, etc. We do however still have our families, our friends and most importantly....this forum! This is my main support network and I never feel alone anymore. There is always someone who'll respond.

You'll learn to live with this, be it for 2yrs or much longer and you'll eventually feel less overwhelmed and alone. Believe me....we've all been there!

This forum is full of people who can...and want to help and will support you even on the loneliest day. You can be in a room full of people and still feel alone.....it's communication that's important, so keep communicating here and you'll soon realise you really aren't alone. ❤️

[Nextoneplease]

Well said Kendrew 😊 Chronic illness like PMR/GCA is difficult to manage at the best of times…..and with Covid (and the context of Christmas at the moment) often doubly so. But we’re all here for each other 😊 Chin up nallufl24 xx

[tangocharlie]

The charity PMRGCAuk runs a Helpline so if you want someone to talk to who 'gets' how it is to have PMR or GCA give them a ring sometime, though I think it'll be closed over Christmas itself as it's run by volunteers. I'm a long-termer having had PMR for 10 years now and this HealthUnlocked site has been a Godsend. Everything I've learned (and educated my doctors about) I've got from here, so you are never alone and no question is ever a silly question. The website with the phone number on is pmrgca.org.uk/

[Sharitone]

Know just how you feel, nallufl!

[Bcol]

Morning Nallufl24, nothing much to add to the previous excellent comments, other than apart from some of us night owls we have members across the continents so there is nearly always someone who will be online and able to answer questions, listen patiently and understandingly to rants and moans, stories of happiness and success and/or just provide comfort when it's needed. Take care and stay safe.

[2013mayo]

Hi,I have GCA for over 2 years now. Some doctors make light of this condition and give the impression that it only last for a few months, they are so very wrong. I also have PMR, so I think it depends on each individual case. I think you get good times and then bang, you get a relapse, it’s all very upsetting just when you think you are on the mend. It does get easier to manage as time goes on as you are more aware of your body and it’s little niggles.

This site helps me so much, everyone is so helpful.

Take care

[PuttyPenguin]

Nallufl24 so sorry to hear you're feeling a bit lonely. Covid has not been our friend. Have a look on the PMR GCA charity site and search for local groups - you might be able to get on their zoom sessions that they have sometimes and at least that gives you someone to talk to about your disease.

I have a sneaky feeling that some people with GCA recover far quicker than some with PMR. My friend recovered within two year from GCA - so I've decided I will too...even though I have both diseases.

Also, in order to lift your spirits, light up your house during winter. I find it's helped me during the last year - I have fairy lights on all over the place! Another thing I do is to find out who lives on their own locally and try to call or email them periodically as you add to their lives and to yours. My mother always said to me ' no matter what happens to your in life, there's always someone worse off - so be grateful for what you have'. I've found this of great benefit and have actively tried to help others...such as this forum - even though I don't have a lot of experience and knowledge of this disease.

Sending you a virtual cuddle!

[Frewen1]

Sending solidarity and sympathy . I’m into second year GCA - one tricky thing I find is that while I know how much my life has changed, been compromised, people on the outside don’t really understand … “ but you seem so like yourself, you don’t seem ill” ( except for round face, that is)… but how can they? As everyone says, keep connected, and you have loads of support here from these wonderful people.

[cycli]

A good question nallufl24. As you see there's no easy answer. I've got both and having a bad spot at present due to medics wanting me to reduce too early. I've been on the journey for 6 months and don't expect to be clear anytime soon. I'm now recalibrating on how do I feel today and planning accordingly. Patience, realistic targets and adjustment are the best friends you have in this battle.

[Bachblues]

Yes I agree - this site is invaluable and has helped me enormously. Thank you to all.

[oscarandchloe]

Welcome! You will be listened to and supported by this wonderful forum. What a godsend it has been to me over the past 18 months. As GCA/PMR is such an individual disease you must accept that managing it is your responsibility, your GP will not know how you feel from day to day. Listening to your body and patience are the skills we have all had to develop. Your other weapon is knowledge, the more you know about the meds that are offered to you, what the side effects are likely to be and how you can manage these, the better you will feel about coping. I was initially diagnosed with GCA and put on a high dose of Prednisolone by my very vigilant GP. She never discussed the side effects, I read the stuff in the packet and felt terrified. I hadn't found this forum at that point so I just suffered from many of the horrible side effects including overwhelming anxiety. It was so bad that the GP put me on an NHS course. I was in with desperate university students and became their granny figure! As the dose reduced I felt better but had lost about half my head hair, but got disturbing hair on my face, developed a moon face and a hump! As I reduced the Pred. I found I had also developed PMR and I started taking medication for that one year after being diagnosed with GCA. At that point I found the Forum -hooray! The day after taking that initial high dose of Pred. for GCA all my symptoms for that disappeared and have never returned. The other excellent advice I got from here was to buy Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. You can get it through Amazon. I re-read often and it gives me confidence to speak to medics and accept or query their suggestions or info. I have given a copy of PMR/GCAUK's quarterly NewsWire to my GP which you get if you become a member. She admitted to me that she found managing 'her' GCA/PMR patients difficult -'it's so complex'. Both she and the Oxford rheumy seem happy (relieved?) to let me manage my own tapering. Please don't feel alone. It's a long journey for most of us but on the way we have to also learn about ourselves.

[nallufl24]

Thank you. I actually did buy that book and that’s how I found this forum which has really enlightened me