Will My GCA Come Back?: Hello I used to read a lot... - PMRGCAuk

PMRGCAuk

11,759 members21,467 posts

Will My GCA Come Back?

arthur463
arthur463

Hello

I used to read a lot and write a bit on this site. It started in lte 2017 after I contracted GCA and lost the sight in my right eye - my favourite eye. I learned a lot from everyone on here, but especially from the leading ladies on this site. This helped a lot in managing the various medics that I met along the way, and the various drugs that I had to contend with. I navigated the onset of prednisolone-induced diabetes and osteoporosis, and the resulltant three compression fractures of the spine that resulted from that. Last Summer I faded away from this site since I felt that I had reached some kind of plateau.

Now I have reached another watershed, and I am unsure how to proceed. I am now on an extremely low dose of prednisolone (1mg after starting at 60mg). - and I fear for the future. People on here have said that GCA can persist for about six years, whereas my rheumatologist says that I should reach zero prednisolone at the end of two years. I want to believe her since these drugs have done me a lot of harm, but I dread the reappearance of GCA symptoms and the loss of my second eye.

I feel like some old hound dog that's been washed-up on the beach of a desert island. Behind me is the roaring sea, and I didn't like that. Ahead of me are thick trees with lions and gorillas in there - and I don't like that either.

What shall I do?

Arthur

28 Replies
oldestnewest

Know what you mean! I’m sitting on 0.5mg on the same beach, it’ll be 3 years in March. I suspect that if I were to have a full GCA flare my 0.5mg will be like a peashooter against an inferno so it may just be a monster proof comfort blanket. The challenge is to work out what I can do in life that makes the most of it without possibly precipitating a relapse. That’s the trouble after the body has fallen over catastrophically. So, I’ll just get an icecream and prevaricate a bit longer.

PMRpro
PMRproAmbassador in reply to SnazzyD

Sounds like a plan!

arthur463
arthur463 in reply to SnazzyD

Ice cream! -- I hadn't thought of that!

PMRpro
PMRproAmbassador in reply to arthur463

A good icecream makes anything feel better!!!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Arthur....

Keep the paddle* to hand...just in case🚣‍♂️ required. ..hopefully not.

In the meantime......make friends with the silverback gorilla🦍and stay clear of the open plains. Lions 🦁need to be able to see their prey!

*Aka for Pred

So long as you have no symptoms stick to 1mg as long as you want...nothing in the side effect line, but might be doing something for your GCA.

When you feel brave enough to venture on, then slow taper to 0,5mg then same again to zero! But don’t be pressurised by a Rheumy who may THINK GCA should be gone in 2 years - but she can’t guarantee it!

Me - been in remission 3 years 4months, so it can be done....along with jinasc and Celtic amongst others.

Good luck.

arthur463
arthur463 in reply to DorsetLady

Ah! Dorsetlady -- How nice to hear from you. . I am due to go to 0.5mg at the end of this week - so I will do that.

Thanks for the reassurance

Arthur

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to arthur463

Agree with PMRpro - you have to get on with life - and stop worrying whether GCA will return.

There is little point worrying about what MIGHT happen - you can’t do anything - except miss out on things you could be enjoying.

You know the signs if it does reappear- should that happen (and very unlikely with GCA if it’s been allowed to runs its course) - then you take action.

Believe me, I know where you are coming from - and because we both had a very traumatic beginning with GCA - we aren’t going to let that happen again! But to honest, in the words of the song - you have to “let it go!“

Like you, I value my one eye more than most people value both of theirs, so get out and make the most of it! Surprisingly how rosy the view can be.

Take care.

PMRpro
PMRproAmbassador

It is like everything of the sort - you either put it to the back of your mind and get on with life or you let it cripple you.

If that 1mg is like a comfort blanket and makes you feel better mentally then stick with it - it is such a low dose that it will do no harm. OTOH, the chances of it being the protection against GCA you seem to feel it is are very small since people cross the line from PMR to GCA at much higher doses than that. You just need to be watchful, maybe persuade your GP to check ESR/CRP every few months anyway and go for checks any time you think there might be a return of the niggles that might suggest the GCA is stirring.

arthur463
arthur463 in reply to PMRpro

Hello PMRpro -- Good to hear from you again. I had thought of the comfort blanket notion, but I will carry on down. 1mg would be a skimpy blanket anyway.

Yes - I do get ESR/CRP every couple of months.

Thanks

My rheumatologist told me I will be on a low dose of prednisone the rest of my life. Currently 16. 1 sounds wonderful!! Good luck. GCA since October 2018.

PMRpro
PMRproAmbassador in reply to alvertta

I wish I knew why they say this to people - they can't know. And if some keep saying this - why do others try to rush us off pred at a rate of knots?

I think you are probably one of many who have been told the two year story. Your doctor read it somewhere and assumed it was 100% correct.

Oh Arthur! How eloquently you put all of this. The 6 year thing is a median figure, your Rheumatologist may be quite right that you are out of the woods. Symptoms rule. How are you? You will recognise this big bear if he starts growling again. You seem to feel that you are between a rock and a hard place. You sound sad, I am sorry that you lost the sight in your favourite eye. I know what you mean. Surely Pred saved your other eye?

Stay with us for a bit Arthur463, there are people on here that really do understand. 🌷

What a kind and thoughtful mail Jane.. You have hit the nail on the head. Having GCA return is one thing.. Not realising that it has returned would be quite another. Anyway, I will carry on down to zero, and keeep an eye open for the bear.

I didn't mean to give the impression that I'm sad.. - I'm just a bit bothered. I barked for a bit of advice I guess.

Yes I will stay for a while.

sondya
sondya in reply to arthur463

'Not realising that it has returned would be quite another'.

This is my biggest fear as well.

Keep well, Arthur.

Cheers from New Zealand.

arthur463
arthur463 in reply to sondya

Hello Sondya in New Zealand

It sounds as though you know exactly where I'm coming from . . I even sleep with a dim light on, so that if I wake up in the night, I can straight away check that I can still see with my remaining eye.

It seems that you are coming down the predisolone ladder too.

Good Luck to you too Sondya.

Arthur - from Wonersh - in Surrey - in England

My endocrinologist thinks I might be on a low dose for life because although my adrenals are kicking in I feel terrible below 5. He can't see the rush.

arthur463
arthur463 in reply to Hellyowl

Hello Hellyowl

I understand why your endocrinologist doesn't want to hurry you .. Unfortunately my rheumatologis (who I trust quite a bit) says that in my case it's "a balance of risk" .. The risk being that the steroids have precipitated diabetes and osteoporosis with three crush fractures of my vertebra. - what jolly fun that was! They have also accelerated my heart failure, causing awful breathlessness .. So anyway, she therefore wants me off them PDQ, after initially saying that I may be on them for life - like you .. I hope she's got it right.

Good Luck Hellyowl

Arthur

I have been wondering about this for years. I was diagnosed over 4 years ago with GCA. Now down to 3 mg. a day, after starting at 60. Will this ever go away?

PMRpro
PMRproAmbassador in reply to pball

Somewhere IRO 4 to 5 years seems to be a common time for GCA. I only know one person off pred in 2 years - and 4 years later PMR returned to play!

arthur463
arthur463 in reply to PMRpro

Oh my Goodness! There's more bad news!

A baby bear Arthur. X

Yes - It's only a baby bear - not to worry.

arthur463
arthur463 in reply to pball

Well pball - we both have to watch out for those bears in our jungles as best we can I guess.

"Will it ever go away" - Indeed, that is the question.

Keep watch

Arthur

arthur463
arthur463 in reply to pball

Hello pball

It's so difficult for us nervous chickens .. There's those that tell us not to be wimps and to get off the steroids - and there's those that tell us of impending doom if we do that.

Will it ever go away? you ask. Maybe, and maybe not. - but I am a country boy, and I have met some very old and fit nervous chickens, so there is hope pball.

Arthur463,

My GCA/PMR started in 2016. I was also on 60mg and I am now down to 1.5mg of Prednisone. and one shot of Actemra/Tocilizumab every two weeks. I have had two Rhuemys (one moved) tell me I will be on 1 to 2 mg of Prednisone for a very long time but not to worry because it is a very low dose.

I try to eat low carbohydrate and I exercise to keep my blood sugar down and it seems to work. One of Prednisones side effects is high blood sugar and I think the low carb takes care of that.

I also have a fear of a Flare and keep some 5mg and 10mg tablets around 'just in case'. I hope this helps.

arthur463
arthur463 in reply to enan-illuc

Hello enan

I too try to keep my blood sugar down after being told that the steroids had made me diabetic. I only have a fluffy understanding of all these things, but I bought one of these diabetic monitor arrangements, and it seems to be pleased with the progress I have made.

I have stopped almost all forms of sugar in my diet - except for the Scotch whisky which is essential for my forward looking sanity.

I too keep a supply of higher dose steroids in case the beast returns.

No one has ever offered me the Tocilizumab thing. Are you a private patient?

Anyway enan - All the best to you in your efforts to navigate this maze.

Arthur

Arthur,

I found that a short whiskey made my heart beat faster when I was on a higher dose of Prednisone but as I dropped the dose I was OK. I also think it helps us get through this ordeal.

I am in the USA and Actemra/Tocilizumab is readily available but costly, My insurance pays for most of it so I am very lucky. I have found that the most important 'medicine' is to keep a positive attitude but at times that can be very difficult. Stay strong!

You may also like...