Fundraising After Diagnosis

Hi All

I was diagnosed with PMR and GCA a few weeks ago. Very rare in my age apparently.Been on Pred since (reluctantly). The joint pains have eased but the headaches are still daily.

I was really scared at 1st but have decided to turrn it around and enter some events to raise money and awareness. Up until last year I was entering 100k (on foot) events. Do you think the site will let me post my sponsor page to help promote what Im trying to do?

14 Replies

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  • Out of interest Jacqueline - how old are you? I'm a patient rep in a research group so "young" patients are of great interest to me. I have maintained for the last 4 years that there are far more young people out there with PMR than the rheumys know and - unfortunately - more GCA patients too.

  • Forgot to say - send a message to Kate Gilbert and ask, she'll know how that sort of thing works.

  • Thank you.. Have sent her a message on Facebook

  • Hi

    I am 48..

    Nice to be called 'young' again :)

  • Nice to hear of a rheumy who was willing to consider PMR in an under 50 patient. I was ignored for 5 years - even 56 was too young for the chap I saw! The guidelines say "over 50" now, until a few years ago it was "over 55" - but too many think this is a line drawn in concrete not sand! If it is a reasonable option at 50 - then it isn't going to be unheard of at 48, or even earlier. I'll spare you the rant though ;-)

    By the way - at the top of the page is a picture of an envelope, next to communities. You can send private messages on here too.

  • This is my 1st time of posting on here as yo can probably tell :)

    I encountered a very rude and arrogant consultant at the hospital last week but took it all in my stride

    Kate has said to go ahead and post my sponsor page. Where is the best place to do so? On this thread?

  • No idea to be honest - at the side of this page is a list of pinned posts which are upgraded by the administrators so maybe they'd do that for you so it didn't get lost. It probably would be on the other forums I'm involved with. I know Kate is away for the weekend, maybe she or someone will help after the weekend.

    Is it flavour of the month to have rude and arrogant rheumies? Someone else has just told me a registrar told her she must be steroid resistant as she was stuck at 9mg after over a year - and 100% of PMR patients are recovered after a year. If we've had it for longer it isn't PMR. Well, REALLY?????? Luckily the consultant overruled him. There was a similar case a couple of weeks ago. Wonder if they are all the same person? One is too many - heaven help us if there are more!

  • Thannk you

    The one I saw almost asked why I was wasting his time.. That it was ridiculous that a woman of my age had been diagnosed with PMR and GCA.. That is was unheard of and ridiculous.. I was gobsmacked at his attitude.. Maybe he was manopausal.. hehe

  • I was 51 when diagnosed last year. First Rheumy refused to even consider I might have PMR as I was 'too young' (normally a phrase I quite like!) My GP disagreed and contacted a different consultant - lucky for me as I quickly progressed to having GCA. Keep coming back to this forum - I have found it to be really helpful

  • Thank you

    Im still learning about it all here dimas62.. Trying to avoid google and suchlikes as it scared the pants off me when I 1st started looking at things..

  • Hi Jaqueline, I'm also 48, and had similar attitude from Rheumys initially. I suffered PMR symptoms for 14 month before they decided to try steroids and then diagnose me with Atypical PMR ( was 46 when it started). Out of interest did you have a temporal biopsy to confirm GCA? I had a biopsy in Oct 10 months after starting steroids, it was negative and my bloods have always been normal. I get burning pain in the temples, shooting pains just above and behind ears, jaw cramping, tongue pains which has ischaemic patches and spasms all night a few times a week. Oh and pulsatile tinnitus, yet they still tell me they don't know what's causing all this as it can't be GCA. Reasons being my age and normal bloods. I have quoted research that states 4-11% of GCA patients have normal bloods. Now waiting to see Dermatologist and ENT to see if they can explain ischaemic patches on tongue and pain. I just keep hoping one day ....

    Good luck with your fund raising, I'm sure you will enjoy this site, everyone is so friendly and helpful.

    Best Wishes, Runrig

  • Hi Runrig.. My GP is very good.. its going beyond her I come across the negative arrogance of some consultants.. Im sorry to read your experience. This is another reason I want to do my fundraising, to raise awareness. I work in medical research and know the costs involved with trying to find cures or meds to help. Although pred is probably the cheapest drug to manufacture. I have a few scientists after my blood for experiments at the moment hahaha.. its actually illegal in UK to donate blood for research though.. which is ridiculous.

    Thank you everryone for such a warm welcome. x

  • Welcome Jcqln. It occurs to me that you may want to wait awhile before doing your next 100k, especially if sponsored when you will feel under pressure to complete it. These diseases make you really ill and fatigue is common and unpredictable. I got back to my old sport on Pred with PMR but since developing GCA I am cream-crackered and have had to alter my goals tremendously. This new acceptance of my limitations is probably the toughest part of the journey for me. I'm self employed and drag myself out to work for just a couple of hours a day and spend the rest of the time recovering. Please give yourself a few months to learn your limitations. :)

  • Hi Saxjody

    I will not be doing any 100ks this year.. I have paid and signed up for a 50k for the end of June.. Last year I fell at 75k and that was the start of noticing I had more wrong with me than UAT.. I have continued my training though and actually find that it keeps me focus and positive. If I find myself really struggling then I will be sure to rest. Thank you for your advice it is all very welcome x

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