How did I manage to get to this age?😎
I made it!: How did I manage to get to this age?😎 - PMRGCAuk
I made it!
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Constance13
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58 Replies
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Congratulations Constance 🎂
Have a Wonderful Day! 🥂💐
MrsN x
Happy birthday! X
Hard Work and determination
Happy Birthday do hope someone is spoiling you today
xx
Family here, 11 of them (not in our flat, thank goodness)!😂😂 I haven't to lift a finger!! 😎🍾🍸
DorsetLadyPMRGCAuk volunteer
Happy Birthday 💐
Happy Birthday Constance!🌺 Many Happy Returns of the Day.
You did because I did...................love your tartan chair.
Take care and have a lovely time, when they all disappear,,,,,,feet up and let the dust come.
your older friend from pats exp. xxx
Got to have something British! 😂😂
It is no more than I expected and thought perhaps you had moved into the photo - just so I could see it...😉😉😉
Dear Constance have a wonderful day and many Happy Returns. Cake allowed today 🎂🍾
Congratulations! Celebrating survival is how I now see birthdays (just one year younger than you). Have a lovely day!
A very happy birthday to you Constance. 🎂 💐 🥂
Happy birthday constance!!🌻🎂🍻🥂
Happy Birthday 🌸
Have a lovely birthday
Happy Birthday xxx
Happy Birthday! 🍰
Washing you a very Happy Birthday Constance.
Happy birthday.
PMRproAmbassador
Happy birthday from another Leo! I know you will have a lovely German birthday xxx
It is only a year more than last year so you crept up on it ...
It was a lovely 'English' party. There were 11 of us and only one was a German (my SIL)!😂
Just returned home - lots of pressies!
Wishing you a wonderful birthday xx
Many Blessings, hope you had a beautiful day! 🎊🎉🎁!!
Happy birthday. Glad you have had a lovely day
Hi Constance... A belated Many Happy Returns.... Hope you had a wonderful day with your family and they absolutely spoiled you...
All good wishes... 💐💐🥂 Lena 🤗
Thanks Lena.
I really WAS spoiled by my family - I didn't lift a finger for four days.😂😂
It does come as surprise. 😳 , 😁. Happy birthday!
Happy belated birthday!
Viel Glück zum Geburtstag! From a Swiss Texan to a British German! Hmmm. I have the same table- but with Spanish influences being that we are so close here to Mexico. But they are almost identical. ... and almost the same carpet under. I should send you a pic for your birthday!
I wish you a very of remission and alles gute im neuen Jahr. Ich halte die Daumen!
Vielen Dank!😂
I'd love to have a photo. I don't know if you can send them by the 'chat' button. Must find out! Does anyone know?
Constance
I’d have to put it on a general post- I can’t attach it in the chat section. It’s a bit of a limitation of the HU platform.
I do need to introduce myself here to everyone. I really have not done it yet. I don’t,” quite “ fit PMR specifically, although when I found out deteriorations to the cervical spine might fit the profile, I guess this might count a little.
Mainly I have more of a Vasculitis that fits small- medium vessel Vasculitis with a very high RF. It is systemic, and is hitting my organs also. It is causing some of these vessels to swell shut.
It’s been very difficult to sort out what’s APS clotting and now what we believe to be Vasculitis.
Im 50.
My primary auto immune disease is Anti Phospholipid Syndrome, a very severe auto immune blood clotting disorder that is in the Lupus family- that also is is Vasculitic and inflammatory in nature.
It however, is not ever self limiting. It does, as its on the Lupus spectrum, have flares.
I’m finding this forum incredibly well run and educational, which is critical for me.
Uhm! Not sure this IS the right forum for you! One of our experts will answer that I'm sure.
The HU Lupus Forum may be better for you.
💐💐
Yes- what you say would make perfect sense .
I’m an administrator on the HU Hughes/ sticky Blood forum, which also is also for Lupus. ( APS is also known as Hughes Syndrome, as it was Professor Hughes and his team who first described it in 1983. Some - about 20% to 25%of his Lupus patients were demonstrating slightly different symptoms - hyper coaguable symptoms. )
Professor Hughes opened the first dedicated lupus clinic in all of Europe, and it is in London. It’s part of the London Bridge Hospital.
I am his patient. My team in Texas sent me to him to help get my clotting under control.
Very often these auto immune diseases come in gangs, but Vasculitis is not one of the super common ones, although it does happen.
There is a ,”lupus Vasculitis.”
I’ve asked, but I’m not getting a lot of help.
PMR pro can attest to this. I tried first on the Vasculitis UK forum first and the first reply was honest and very kind, but was ... “try the Lupus forum. “
I’ve found this one to be the most informative so far... but I’ve just stayed very quiet...
I’m extremely ill and I’m not sure my Rheumatoligist is an expert in Vasculitis.
I’m not quite ticking all the right boxes in all the right ways... my Rheumatoligist is very good. I’m just not sure he’s got this. No one can be expected to be an expert in everything!
Mainly I’m finding learning about ,”Pred” invaluable. It’s already helping me .
Nothing to stop you following this forum. If we CAN help, we will.
Well- mainly... happy birthday! I’ll stop ,” high jacking your thread!”
And.... thank you!!!
😂💐💐🍀
I think it would be helpful to you if you put this (your health concerns) into a general post, including explaining why you are asking here. As you know, only people who are reading about Constance's birthday will be likely to see your comments.
Yes, I need to do this! I’ve been meaning to. Will do this later today. I’m 6 hours off from you so not home at the mo.
I'm actually in Nova Scotia, but the rest of them are, mostly, in UK and Europe!
Yes. I will do. I’ve been in massive migraines every other day- and the days I’m ok I am playing ,” life catch up.”
Still have a teenager at home!
And st hospital every other day having my INR for warfarin drawn because the Pred is causing the INR to become unstable. I’m also on Rituximab infusions, but I think now I’ve works out that it’s the Rituximab that’s lowered the INR and the steroids that’s raised the INR.
But now the Pred is making my tummy very sick- so that’s going to make my INR too high.
I think I need the Pred IM instead of by mouth. These are not coated. I read on here they can be enteric coated? I see my GP in two days. Can I get them in any strength enteric coated?
Thank you ! Sorry these are very unusual circumstances.
Enteric coated pred is a UK thing, it doesn't get a passport.
I would have thought daily INRs was a bit pointless, the Warfarin half life is so long they won't help in adjusting the dose and the cause is not dose-related I suspect. My INRs also swung about but it had nothing to do with how we adjusted the dose.
APS antibodies are satanic this way...we use green leafy vegetables as a tool like medicine. I can swing from 4.0-5.0 in a span of 12 hours.
( I try to test every other to every third day but when new meds are brought on board- or illness- every other day.)
Oh... that’s a shame. That could be very useful for me. I have seizures when INR gets too low. - tiny clots in the brain. Also dysautonomia- APS. Does this happen with the Vasculitis in the brain also?
At any rate the tummy doesn’t work correctly. It can go into ileus.
I don't know to be honest - cerebral vasculitis doesn't come up much here. vivdunstan on the vasculitis forum would probably know though.
in reply to KellyInTexas
Some people buy enteric coated empty capsules and put the pred inside. You can get them online but the quality does seem to vary if reviews are anything to go by
There is a guy on the patient.info PMRGCA forum whose wife went on an antiinflammatory diet of some sort, had a massive migraine on the 3rd day and hasn't had one since. He eats much the same and it seems to have helped his PMR too - he's over 80 and still skiing and was still cycling up and down New Mexico mountains until he had an injury!
Yes! I will look at this. Dr Hughes and my ( our ) APS/ Lupus Rheumatoligists advocate for auto immune diets - no gluten and no sugars.
Dove tails nicely with what you all here are striving for. And now me also it would seem. ( I can’t gain weight as my heparin and warfarin are very weight sensitive dosing .)
Plus.. vanity. Let’s be honest! ( and joints- I think really for you all it’s imperative from what I’m empathetically reading.)
I will post very soon a comprehensive profile. I’ll let you say if you think I fit. My neck is suspect. Slipped disc/ degenerative dis disease. But it was not rapid. Age 26. ( not ticking the box.)
We are in NM in the mountains quite often- my husband and family skiing and cycling. Into his 80’s!!!! Colour me impressed!
Lots of things overlap ...
Yes, with this PMR also? Im sure that must be right.
I meant in every sense really - a/i disease is a spectrum, the labels refer to given sets of symptoms but when they don't fit doctors get confused. You have Kellyin texas disorder ...
😂🤪
No there is no way to put pics on the chat threads, although people can link to images if they are online.
Congrats Constance. Hope you are having a lovely day. X
Happy Birthday!
Happy Birthday
happy birthday have a lovely day x
Happy Birthday to you🎉🎊💝
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