I'm new here.. I am a GCA sufferer!: The story so... - PMRGCAuk

PMRGCAuk
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I'm new here.. I am a GCA sufferer!

Kael-gca
Kael-gca

The story so far... After suffering two weeks of flu like symptoms, I developed sharp shooting pains on the right side of my head. Went to the GP, naively in search of strong pain killers, and was shocked to be diagnosed as potentially having GCA and immediately put on 70mg Prednisolone. The headache disappeared the next day! My condition has since been confirmed by a Rheumatologist and I am working on reducing the Preds while battling the niggling side effects...

18 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi and welcome,

Lucky you to get such a quick diagnosis, many are not so fortunate.

Have a look at the attached, may give you some pointers of how to get through your illness -

healthunlocked.com/pmrgcauk...

I just started on this site recently. You are going to love the supportive positive advice!!

Hidden
Hidden

Welcome to Our Group, l’m a PMR’er but lots on here with GCA/PMR

Dorset Lady’s link will be very helpful for you. I’m so pleased you were diagnosed so quickly.

Best Wishes 🌺

MrsN

Welcome, for all the wrong reasons, because you are ill. But you have found the best place to receive strong support and expert advice. You will soon hear from our trusted experts I am sure. Mean time, keep strong, relax,rest and don't sweat the small stuff. Believe me 6 months in on GCA and I am slowly but surely feeling better.

Well caught! and you are in the right place to make this as easy as possible. Take care and treat yourself tenderly. You may feel full of energy but you still have a serious systemic disease and you need to treat yourself accordingly. Glad you found us!

Hi,

My GCA came on in a similar way. The Pred saved my sight but in a short space of time I went from going for a run after work to hardly being able to walk because of the effect of the pred on my muscles. Nobody warned me and I was really scared. Then I saw a brilliant doctor who said I had to exercise, she recommended Pilates. I also got a treadmill because at first I couldn't risk going for a walk and not getting home. Although it was unpleasant, I did exercise and it kept me mobile and kept the weight from going up too much. I have now swapped the treadmill for a dog, much more fun, but still do Pilates three times a week. Despite the stiffness and muscle pain in the mornings I am possibly fitter two years on than I was before the GCA.

Think I'm going to have to find a pilates class, but do you not find it difficult? I'm thinking I wouldn't be able to do it! X

PMRpro
PMRproAmbassador
in reply to Lonsdalelass

I did Pilates for the entire 5 years of PMR with no pred - it was that and my Bowen therapist that kept me upright and mobile at any level! I did have a brilliant instructor and she adapted stuff for me. There was also a brilliant yoga teacher there and I managed some very adapted Iyengha yoga classes (postures). They, plus my hairdresser, were the only things I regretted losing when I moved here.

Lonsdalelass
Lonsdalelass
in reply to PMRpro

I have no excuses then but to find a class and get started! Thanks for saying I CAN do it! X

PMRpro
PMRproAmbassador
in reply to Lonsdalelass

You can only try - and you need a receptive teacher. The basic rule in Pilates is to do it at YOUR level and NEVER get competitive. I would start a class almost unable to move - after 10 mins Pilates warmup I could move much further!

Lonsdalelass
Lonsdalelass
in reply to PMRpro

This gives me the motivation I need. I'll have to make some phone calls. X

Hi, it will depend where you are starting from, my Pilates coach is also a physio and I told him all about my problems, he had never heard of GCA but he was familiar with the effect of steroids on muscles. As long as you can get up and down off the floor you can do it. A good coach should let you do what you can manage and not let you feel clumsy or uncomfortable. Where I go is not very posh and there are not many young trendy things in lycra. Mostly plump older things in Lycra and we do laugh at each other. It was slow but two years down the line I am competent enough to help new members . If I miss two weeks I really know about it. Also, you can do it at home or when you are on holiday without any equipment. I do a couple minutes stretching every morning just to get going.

Thank you for that. I'm going to give it a try as soon as I find a class near me. I always used to like exercising and did go to a gym regularly at one time, so I'm sure I'll enjoy it once I have the confidence again.

PMRpro
PMRproAmbassador
in reply to Hellyowl

Sounds like our class as it was a daytime one but we did get a few blokes turning up. The regulars knew we were all able - but when a new rugby player or two appeared you could see on their faces they thought this was going to be easy. They only managed a couple of classes - before giving up...

Hellyowl
Hellyowl
in reply to PMRpro

Hi, mine are all evening as I work, but a great mix, for example a retired lady GP who needs to keep her strength up to ride her motorbike. Like you, we sometimes get young people who think they can just tone tums and bums a bit, they don't seem to last as long as us hardy oldies do. Probably helps that our coach is also 65 and has a bad hip.

Hello and welcome! I'm sure you will get some really good advice on this site x

Hidden
Hidden

Welcome to the best support forum around. I'm 18 months into PMR/GCA and started off on 60mg pred a day. It is a bit of a rocky journey reducing the dosage as your body reacts to the pred and later there is the withdrawal symptoms. Be sure to rest when needed and pace yourself and let your body get used to each dosage change. You're fortunate you got an early diagnosis and are well on the way to dealing with GCA. Put whatever questions or observations you have, no matter what, to this forum and you'll get continued support through this journey to wellness.

Sorry to hear that you have GCA, but you WILL get lots of support and encouragement on this site and realise that you are not alone. If you need to rant and rave and let off steam that's fine. I was diagnosed with GCA/PMR 3months ago and I am still struggling with it all. There will be good and very good days, probably followed by some pretty rotten days, but now I have accepted the inevitable, for the moment, and carry on to the best of my ability.

Take care and rest as much as possible.

Love and healing hugs xx

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