Recently diagnosed: Glad to find this support... - PMRGCAuk

PMRGCAuk

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Recently diagnosed

Cyclegirl54 profile image
10 Replies

Glad to find this support system . Thanks .

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Cyclegirl54 profile image
Cyclegirl54
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10 Replies
Soraya_PMR profile image
Soraya_PMR

Welcome! What do you have? PMR? GCA? Both?

How is your response to steroids?

What dose are you on?

There are plenty of side effects to prednisolone, but hopefully you won’t get too many. Do shout if you have queries or worries, lots of people here who have travelled a similar path who are very happy to help you steer through.

Hi Cyclegirl54, Welcome! Do you cycle? Were you born in 1954? (Sorry, I'm the nosey, outspoken American Expat, living in the UK. Just tell me to "back off," if I get too pushy! )

I am sure you'll find this site beneficial and informative There are many people here that have been dealing with one or both diseases for many years an their wisdom and expertise is invaluable.

Welcome and best of luck on the journey.

Cyclegirl54 profile image
Cyclegirl54

Hi there, no problem with the questions! I do cycle but I’m 54 years old! Just getting to grips with this. I had an initial steroid injection yesterday from rheumatologist- Seems to be having benefits today and starting pred tablets shortly.

in reply toCyclegirl54

Wow! You are young to be dealing with this crap!!!! I'm so sorry... I wish you the best of luck and hope it's a successful and quick journey for you.

Inger62 profile image
Inger62 in reply toCyclegirl54

Hi there, welcome and lucky you to have found this lifesaving forum so soon! I have belonged to the Junior-club here since okt 17. I was 55 by the time I started on Pred late Sept, but was 54 like you when the strange fatigue/lower back pain started in primo Aug. Yes, the aches’n pains went to all the usual parts, but my bloods went nowhere, so the young temp GP was very causious. But since I knew the symptoms well from my Mum, and since I could argue that 20% have normal bloods, (and obviously excluding RA aso), I was finally allowed to start on 15mg, which worked within 2 hrs. Pains mostly gone, stiffness and fatigue completely gone. Heaven. Anyway, to the point: please read advise you get here- you will soon find out that there’s an A-team of friendly, warm and knowledgeable ladies who will know more about pmr/gca than the average GP, and, who knows what »it feels like». Doesn’t mean we don’t need doctors, just that many things could have gone the wrong had I not found this forum: I would have followed the Norw NHSs tapering plan (tapering faster than the sound of speed), would have been put on alecdronic acid already without dexascan and without any warning. Scary.

Cyclegirl54 profile image
Cyclegirl54 in reply toInger62

Thanks. I’ve been reading about AA - sounds very scary!

SheffieldJane profile image
SheffieldJane

Glad you found us too. What’s your story? Welcome!!!

Cyclegirl54 profile image
Cyclegirl54 in reply toSheffieldJane

Just diagnosed yesterday with PMR! I’m 54 and an exercise instructor by trade !

SheffieldJane profile image
SheffieldJane

What a blow! You will find that your self discipline and ability to follow a programme will help you get through. The enforced rest will be harder, but rest you must. Bring all your questions, whatever they are, here. There is always someone to answer. There is a lot of expertise on here and a number of pretty athletic people. You already know that carbs and sugar are your enemy and calcium and vit D are your friend. Do not agree to Alendronic Acid until you have done lots of research and had a bone density scan.

Sandy1947 profile image
Sandy1947

An exercise instructor! This will be a challenge you can learn to live with. A hiccup on the unpredictable journey of life! Slow is the new normal. Going backwards with amount of weights you lifted makes a difference. It’s a gradual build up. I was lifting 10 pounds pre diagnosis 8 months later I shocked myself and did biceps using 10! At the onset, I was embarrassed standing in the back of the class with 2-3 pounders. I learned to embrace Tai/Chi Quigong, meditation and weekly massage. I was living life in the very fast lane. The new normal is not so bad. Attitude is everything.

Welcome to this wonderful forum.

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