New member: HI folks I am so glad to find this site... - PMRGCAuk

PMRGCAuk

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New member

keepfitdoll profile image
16 Replies

HI folks

I am so glad to find this site. Everyone thought I was drama queen. I developed symptoms early January this year, but put off seeing a doctor until a friend persuaded me. I was diagnosed with PMR and put on steroids. I did get the symptoms for GCA but these had become less so, I am only taking 15g. I hope it does not get worse.

Best wishes to all.

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keepfitdoll profile image
keepfitdoll
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16 Replies
Yellowbluebell profile image
Yellowbluebell

Welcome to the site. Some of our more experienced members will no doubt be along in a bit to give you more advice. If you are experiencing any symptoms of GCA you MUST take them seriously as this can affect your sight. If your gp isnt taking note then you need to get yourself to A&E. Please keep us informed on how you get on.

keepfitdoll profile image
keepfitdoll in reply toYellowbluebell

Thanks, GP is monitering and I make regular appointments.

PMRpro profile image
PMRproAmbassador

I also had a few GCA-type symptoms but was never asked about them so I didn't realise then! But they also disappeared long before pred and 15mg was always enough for me. One rheumatologist says he thinks that for anyone without visual symptoms or headache that 15mg is probably enough - but they always tend to use more to be sure.

Do ask if you have any questions or worries - usually someone will have an answer from experience.

keepfitdoll profile image
keepfitdoll in reply toPMRpro

Thanks.

My main concern is loss of vision. I had flashes in the eyes for a few minuets before using steroids, but not since. I also had aching in the throat. I lost a stone in weight. This is now better and I am eating normal. The muscle and joint pain has gone. I don't want the dosage reduced too soon, so I will discuss this with the doctor at the next visit. The symptoms could come back or get worse. I was told if that happened they would increase the dose. I know you have to be careful with steroids or they can do damage to the body. I am being sent for a bone scan. Thanks for the good advice.

PMRpro profile image
PMRproAmbassador in reply tokeepfitdoll

Steroids at the level you are at haven't hurt me at all in 9 years.

keepfitdoll profile image
keepfitdoll in reply toPMRpro

9 years WOW

PMRpro profile image
PMRproAmbassador in reply tokeepfitdoll

And 15 years of PMR ;)

Pongo13 profile image
Pongo13

I had killer headaches prior to diagnosis and extremely sore scalp. Have only got pmr and am doing well currently. Never thought to mention the headaches and scalp as had all the other symptoms going on. This forum has been a revelation of what to expect and how to cope.

keepfitdoll profile image
keepfitdoll in reply toPongo13

Hope you are keep check on the headaches.

Pongo13 profile image
Pongo13 in reply tokeepfitdoll

Since steroids rarely get one (if I do paracetamol works it’s magic) x

caroli123 profile image
caroli123

Hello & welcome keepfitdoll. I've only been a member myself for 2 days & still finding my way around. Anything you've ever wanted to know you will find on here. :)

keepfitdoll profile image
keepfitdoll in reply tocaroli123

Thanks it is really useful. The doctors these days are so busy, they just don't have the time to explain everything.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi and welcome,

Have a look at this, might help you understand things a bit better. And come back at any time with questions or reassurance -

healthunlocked.com/pmrgcauk...

keepfitdoll profile image
keepfitdoll in reply toDorsetLady

That was very helpful.

PMRCanada profile image
PMRCanada

Welcome keepfitdoll. Glad you got a diagnosis and pain relief. Let us know if you have any questions/concerns.

keepfitdoll profile image
keepfitdoll in reply toPMRCanada

Thanks

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