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PMRGCAuk
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New to GCA and still in shock

Hi everyone, I was diagnosed just before Christmas with GCA thanks to my very thorough GP and rapid referral to Rheumatology. My main problems were a constant headache and flu like symptoms. I'm on 50 mg Prednisolone and haven't started tapering yet so waiting to see what happens! Though I get quite fatigued at times during the day mostly I feel very grateful for an early diagnosis. Getting my head around living with GCA for some time to come is a new bit of self discovery!

I'm wondering if anyone else has a cough along with GCA? Mine started as a dry cough and now is a bit phlegmy though relieved by Olbas pastilles. Thankfully I'm not getting a cold along with everything else!

Just before my diagnosis, my lovely partner who's 73 and myself 65 ordered a couple of Brompton folding bikes so we could go tootling around some quiet off road tracks. I think being on a bike could be a very positive thing to help my GCA. Any other activities that others have found helpful during the recovery process?

Thanks for such a varied and interesting Forum,

All best,

Jane

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Hello Jane, I admire you for your positive attitude. Untough I

"only" have PMR, in retrospective it turns out to be a lifechanging disease. It learned not to make plans, but ask my body, is this okay, are you tired, do you need rest. In the beginning I had a cycletour, only 30 kilimeter, and had no problems at all. After that 4 days of pain an tiredness. That is where PMRPro adviced to start with just a little distance cycling and see how it goes. The Bromptons are the best, I do have one also. Take care, Aletta

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YES! I have had a dry, cough for months actually!!!! In fact, the more I think about it... I have had lots of weird, seemingly unrelated symptoms for months!!!!! Best of luck, I am just a little bit ahead of you; diagnosed on early December.

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Hi Jane

I have PMR .. But I am sure that I read on here the other day that someone had a cough with GCA. It might be worth trawling back on recent messages with GCA in post title.

I certainly know with my PMR that muscles lack tolerance for excessive exercise but everyone is different in terms of what excess means. Try a short ride and see how you recover. I had to start walking 5mins then 10 and just test limits and rest if I got significant reaction.

It is very very early days for you so good to have small targets until inflammation controlled effectively. No doubt GCA experts will be along help you more. 🌻

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Hi Jane,l wish you good progress on your journey with PMR andGCA,l hope that you will be able to enjoy your cycling xx

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Cough, sore throat and hoarseness can be symptoms of GCA - it is affecting the blood vessels that supply the neck and upper chest.

I'm sorry to be the bringer of less pleasing news perhaps: don't get too excited - there isn't a "recovery phase" in the way you probably think of it. The pred is only managing the inflammation that causes the symptoms and the actual underlying autoimmune disoder continues in the background. That is what makes you feel so fluey and fatigued and that has to be managed by pacing and resting:

healthunlocked.com/pmrgcauk...

Read the links there.

DorsetLady will be along later - once New Zealand surfaces, she is visiting the family - she had GCA and is one of the practical experts on GCA and high dose pred. I am only diagnosed with PMR (though it probably is rather more) and our practical problems are different.

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Hi JaneEd61, welcome, just a few tips. My Rheumy says the most useful thing I did was to get on my cycling sons turbo trainer, I have both PMR and GCA for two years. If you look at the bike one day and think I really don't feel like it today then don't it's your body saying no, listen to your body and rest. Tip from my son - cycle behind your OH you use up to 40 p/c less energy! All good wishes there is light at the end of the tunnel. 🙂

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Hi Jane,

Welcome to the “club”!

I was diagnosed 2 years ago and yes my lungs were affected. When I am having a down day they still feel a bit inflamed when I breathe. Also, the prednisone has its own side effects which can include dizziness. I walk for my exercise.

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Hello, with hindsight prior to my swift blowing up of GCA I had a few months of a dry cough or croaky voice as if I had a virus but with no other symptoms of one. It went a week or two after Pred and never returned.

As for recovery, keep an open mind and avoid having set ideas about how long it’ll take no matter how it is ‘sold’ to you. Pred utterly wiped me out until I got to about 20-25mg and it was such a shock to have my active life taken away so suddenly. Rushing the steroid reductions isn’t worth it but I think the six weeks on 40mg was the longest and I yearned to be lower. Anyway, try to enjoy the ride as much as possible by embracing the new (temporary) one rather than trying to live a meagre approximation of the old one. Good luck!

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Hi there.

I have GCA diagnosed 2.5 years ago based on headache and jaw problems. Subsequently confirmed by biopsy.

I have had a cough for 6 months with occasional phlegm along with assorted other symptoms. Currently being investigated for a relapse.

The advice I would give is to look after your muscles when your body will let you. Prod turns your muscles to fat.

Best wishes x

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Hi Jane,

Sorry haven’t replied before but been out of Wi-fi range for last couple of days - yes there are some, even in the first world!

Can’t say that my GCA or Pred gave me a cough, but fatigue was certainly a factor after the initial “high” of the starting doses.

If you have a look at a couple of my posts, it may give you a bit more info. Just tap my photo on reply and read these posts -

Info for new patients,

If I can do it, so can you,

My one eyed view of GCA

Best wishes,

Reply

Welcome back - wondered where you were!

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Lake Taupo - staying in cousin’s bache (holiday home) no Wi-fi connection in that, and my UK phone internet connection didn’t work. Could have found a public hotspot or borrowed daughter’s iPad, but too much to do with 10people around! So now catching up!

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