It took just 10 minutes final assessment yesterday for Keith (hospital rheumatologist) to tell me that Giant Cell Arteritis (GCA) is over and the lack of headaches during the final months suggests there will not be any flares. It took 18 months tapering to wipe off the slate. He predicted this, saying it should be over in 18mths to 2 years. Very pleased with the results. So am I.
What a wonderful feeling.
To say thank you to the staff of Waitakere (West Auckland) Hospital, I took a bag of tangelos and limes from my garden. The staff at the ultra-sound and rheumatology clinics were always friendly and efficient.
I will still be 'monitored' with three-monthly blood tests and visits to the Rheumatology Clinic.
Hello Sondya
Well your progress amazes me as I am at the (almost) 18 month point myself and (sigh) having a flare at the very time you have apparently overcome GCA. But not to rain on your parade - as you must be feeling delighted and I am very pleased for you ! It also gives me 'hope' however that my particular variation on the theme of PMR/GCA may not play on and on 'forever'. Stay well and hope you hang around the forum for a while longer at least.
Best wishes
Rimmy
Hope we have Rimmy.... Hope we have!!!!
Thanks, Rimmy. The rheumatologist checked at each visit that it had not spread 'below the head'. No sign of PMR. It would have been a different story if it had.
I learned from comments in the forum, helped me enormously. Will still keep in touch.
As the doctors, consultants said - it is treatable, manageable and (for some) curable.
Wish all this for you too.
Me too rimmy xxx bravo sondya xxxx
Good for you! Must be all that great food you eat- and the pétanque you play!
Hi Sue. Took a leaf out your book. If you could do it, so could I.
Sad about the great food, though. Overdid the spicy food at our last family celebration and suffering nasty bout of diverticulitis. Shouldn't have gobbled the food. But the good news is, tomorrow we meet again for another round at Elliott Stables in AuckCit for Jenni's birthday. Will I ever learn.
I'll keep in touch here - and see you on FB. xx
Please do! Hopefully catch up with you again on my next trip over!
Got number 2 grandson staying at moment - going to Ag College nearby in September.
Are you kidding??? OMG! This is fabulous news!!!!!! It took only 18 months? Wow you are one of the lucky ones, huh? I am so very happy for you!!!!!! Hip Hip Hurray! Good on you! Now take it easy and don't push the boundaries, too much!!!!!
Best of luck to you!!!! xxxxxx
Luck of the devil, eh. I'm like the tale about the tiger in the cage who, when the bars were removed still thought they were there and didn't escape. It will take a bit of time to restore confidence. So for now, boundaries are there.
Best of luck to you too. I'll still keep reading the forums. xx
I know a few people over GCA in 2 years - more than I do who disposed of PMR in that time!
Fantastic news, really pleased for you
Thanks, Angie. How's it going for you?
Pretty well on the whole, rest during the day rehearse in the evening and lie awake half the night counting sheep and whatever animals come into my zoo. Down to 32mg from 60 and the red hair warning is working, no more bad news yeehah. I'm thrilled you are free to be a real human again 😎
That's great sondya. May your good health continue. ATB
Many thanks. And for you too - all the best.
I have very fond memories of a trip round NZ I loved the place, Brill news - it must something to do with the climate! And all that vitamin C! Stay well.
Thanks. Also much family support, good advice from doctors whose positivity spurred me on. All the best. I'll still be in touch.
Congratulations ! Great news, gives me hope!
What a wonderful feeling indeed! Good on you. I haven't heard of tangelos since I left SA, 18 years ago.
That is amazing sondya! Well done! You’ve licked it. 🤸♀️
Thanks. After that hell of a journey that I wouldn't wish on anyone, it's a wonderful feeling. The rheumy asked me how was I feeling, were there any symptoms, I said I can't remember what they were. Unbelievable it can be achieved.
Keep well. Say hello to Sheffield . . . my sister lives there, so did my Mum when she was alive. xx
Continued success and best of luck.
Thanks. Best of luck to you too.
That's wonderful news sondya, and so quickly - wow - gives even us 'longtimers' hope - so pleased for you - makes me feel good today... congratulations!
Thank you. Hope soon you will post 'and the good news is . . .'
Echoing Telian's post sondja - a ray of hope indeed .........happy days ahead!
Thanks. Good luck and return to normal soon.
Congrats to you! That's awesome. Did you follow any particular diet? What dosage of Prednisone did you start at and how did you taper off it? I was diagnosed March 2018. Started Pred April at 25mg. Now taking 20 and feeling water retention, especially under chin. Did you have any of that? I didn't know you could have GCA and not PMR.
Being careful about salt and carbs does help the fluid retention due to pred.
PMR symptoms (PMR is the name given to the symptoms, it is not the disease itself) can be part of the constellation of symptoms for GCA - but not necessarily for everybody.
Hi Liz. I was on a high dosage at first (60gm), which reduced the CRP from 76 to 4 in a few weeks. After, the reduction was very slow, blood tests done monthly, then twice monthly and eventually thrice monthly, with assessment by rheumatologist throughout. Never had flares per se, any annoyances blamed on steroid withdrawal. All was going well, the headaches disappeared, as well as the other symptoms - tremors, dry eyes and mouth, tingling scalp, moon face and lost a lot of weight. After a few months, I was told that GCA was over but the reduction was important. Keep going. I am not an exercise person but play competitive pétanque twice a week.
At first my appetite was uncontrollable but I couldn't eat much for jaw spasms and food tasted like rust! Rheumatologist told me not to worry, appetite will return to normal. It has. And no more rust. He didn't put me on any special diet as I normally eat quite healthily - lots of fresh fruit, meat, salads and no processed foods. Have an air fryer, so no oil in cooking. I even went off alcohol. Only advice was to eat a lot of fibre to prevent constipation and drink a lot of water. I had fosamax and omeprazole and low dosage aspirin. That was it.
Rheumatologist said it didn't look like it would spread below the head, and not to worry about PMR. I was very lucky to have a good rheumatologist, a concerned GP and lots of family support.
There is an excellent overview of GCA written for NZ medical practitioners called Giant Cell Arteritis: Always keep it in your head. Google it (don't think I'm allowed to add the link here.) It helped me enormously to understand what was going on.
All the best - and cheers from a nice-ish, warm-ish winter's day in Auckland.
Thank you! I will check out the GCA overview article. I too am quite diligent with avoiding salt, sugar, fats, etc. So my weight hasn't gone up, but I'm still accumulating water mainly under chin. Your symptoms sound very similar to mine, headaches, tingling, tremors, etc. Ugh. Best of health to you from Michigan in the United States.
Of course you can add the link if it is sensible! It's patient.info that are a bit precious!
Hi sondya
I am new here and it gives me a lift to see someone who is in recovery from GCA. There is a light at the end of the tunnel, hopefully.
Hope you are celebrating now.
Hi Sondya.....congratulations! That is great news. I am really interested as I developed PMR and then GCA last Summer 2017 in June. I started at 60mg Prednisone and am now down to 5mg. I reduce very slowly by one mg per month. Though for one week I alternate (6mg/5mg) so next month it will be for a week first 5mg/4mg. Then 4 weeks on 4mg etc. I get extremely nervous every time I reduce and am curious to know how you tapered your Prednisone. I don’t see my Rheumatologist till September...
Thanks.
Hi Stella - I know there are a few days of 'steroid withdrawal' when dosage is reduced and resisted the urge to up the dose. I was assured it was not a flare but quite normal and I kept going. It soon went. As my GP said, doing so well, don't upset the apple cart.
If I had any doubts, I could email my rheumatologist but thankfully, never had to. Bummer that you've got the double whammy, I suppose PMR complicates reduction?
Keep well - cheers
Congratulations! I am thrilled for you. It gives me hope that maybe one day I can say the same. 😊😊
What Wonderful News Sondya 🥂
Enjoy getting back to normal!
Congratulations
Mrs N 💅🏼
PMRer
Hi MrsNails
As a friend who had GCA which lasted 18 months as well and is now off steroids, said: You will not remember what normal was. Now enjoy discovering it again.
She was treated at the same hospital as I was (in the North Shore, Auckland).
Thanks - and all the best.
Hello Sondya it was great to read about your success. I was diagnosed with GCA large vessel kind in October last year although had symptoms for several months before that and and my main symptoms are arm claudication pain from damage blood vessels which I now told will be permanent and some mild jaw claudication. I started on 100mg prednisone for several weeks which stopped progression but did not improve symptoms. Had a course of Acterma and now down to 5mg with no issues. I live in Nelson and considering getting a second opinion. Could you please tell me the name of the Rheumatologist you saw? I am 66 and not ready to accept my lot just yet! Thank you. Thrilled for your success.
Hello Di - not just GCA, you had an earthquake to cope with! Hope no damage to you or your property.
Omigod, that was a huge dosage taken over several weeks but good to know you are tapering successfully. The symptoms are probably side-effects of the drugs. I asked my GP to sort which is what and it helped me enormously in realising it's just the drugs and not a flare. Have you been told your GCA is over?
The Rheumatologist is Dr Keith Colvine who flits between the Waitemata District hospitals in North Shore and Waitakere in Auckland. He's young and listens and is very happy to let me have case notes and explain what exactly is happening.
His maintenance and treatment was pretty much standard practise. There were regular blood tests and assessments, and sure that he would have pulled me if there was something wrong. You could get in touch with Vascular Society of NZ for advice on rheumatologists if Auckland is too far for a second opinion. Best of luck on that.
Keep in touch.
Thanks so much Sondya and I will follow up with the vascular association as you suggest. I hadn't heard of them. No I haven't been told my GCA is over although I feel it is and has been for a while. Go well with your lovely success.
One omission by GP was on tapering Omeprazole. After nearly two years on it, to stop suddenly was not good. I never had problems with stomach acid (due to prednisone) and took Omeprazole to keep it under control. Almost immediately, I got severe gastritis. Today I went to the chemist to get some Omeprazole. Then I saw the price - $61!!! Cheaper to be checked over by the GP next door and get a supply on prescription, which cost $5. Plus the tapering plan. Also had a blood test done - free, of course.
A couple of panadol has given a bit of relief.
Wouldn't be surprised if GCA has gone. Well done.
Hello....I just read this after writing to you asking how you are doing now. How hopeful and inspiring. The writings of Dorset Lady are really encouraging to me too. I'm new...5 months into GCA, blind in left eye and fuzzy right. I've begun a taper and my tremors have stopped... and I have some 'clarity'. I get up an enjoy the day (even if I don't do much) instead of dreading going through it....so I welcome the improvement.
This forum has been an immense help to me. I'd never heard of GCA...and still haven't met anyone who is unless they or a spouse had/has it. My hope is I am somewhat stabilized by the spring (?) and I can relocate nearer my family....9 hours away. I just shared a treasured 3 days with them....our Christmas.
I'm so happy for you and wish you well.... I found that New Zeland article and will get the magnifier out tomorrow and read it. It is 8:30 pm here in Maine now....
Many blessing to ALL....and my best to you~!!!
Hello Grammy - we made it to another decade! Though it's been a shaky transition: one of our off-shore volcanic islands suddenly erupted, killing most of the tourists visiting on the day. A sharp reminder to us further north in Auckland that we live on a volcanic field!
I also worry about my grandson living in rural New South Wales in Australia, in an area currently issued emergency evacuation orders from encroaching bush-fires. (He's over there playing rugby league.) Shawn and his friends have their bags packed and ready to go. Most of my family and wider circle of friends are spread throughout Australia, those in Sydney are suffering from air pollution worse than in China!
It's affecting New Zealand; a huge smoke cloud is covering the South Island. Even the North Island where I live hasn't been spared. On Thursday (2 Jan) the sun was red in the morning - just as I was on my way to play petanque. Made an exciting but frightening photo!
So . . . health matters have taken a back seat. The rheumatologist reminded me that GCA is in remission, not as I hoped gone forever. The PMR that followed shortly after is pain-free and under control. Energy level increasing. Down to just 5mg pred for PMR.
Wishing you - and my forum friends who have been invaluable with advice and wisdom that made the journey less stressful - better health and peace of mind throughout 2020.
Cheers - Sandy
to see the photo, you will go through a redirect notice.
flickr.com/photos/sondyaust...
Hi Sandy
So many of us are worried about you guys in Australia & New Zealand, like many we’ve had the good fortune to visit both countries & are so very sad about what’s been happening both the Volcano Eruption in NZ & the Fires in Australia. I hope you get good news from your Grandson & wider Family soon.
Good to hear your GCA is in remission & glad to know your PMR isn’t giving you too many issues.
All The Very Best for 2020
I sincerely hope things improve for you all soon 🙏🏼
Kind Regards
MrsN
That photo was indeed frightening and breathtaking at the same time.
I certainly hope your grandson is safe. The images on my news here in the states were just overwhelming. The sky was as red as in your photo with the flames lapping at the trees. There were many amphibious boats taking folks out to a large navel ship after evacuation notices were issued.
I'd say the back seat is the perfect place for 'health issues'; it suggests awareness but has no effect on how we live. Don't you think after going through what you have, what I am, energy is spent like precious coins.....use that energy for joy.
I'd forgotten about it but back in 1985 I was diagnosed with a drug-induced lupus ( thanks to an over zealous neurologist) which went into remission by 1990 when I was 50. Kind of makes me wonder about my immune system.
Onward~! I wish you all the best. I had to look up petanque!! I was surprised...my grandfather came from northern Italy and used to play bocce....looks similar.
Enjoy the pearl that life is....I'm sure your attitude and approach touches the lives of many.
Ah....New Zeland.....on my bucket list....xo
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