Hi everyone after seeing my GP and having the Blood test for PMR he said I was negative 😳 to go away and take ibuprofen. I was shocked by his diagnosis so decided to go private and see a specialist !! I’ve just had my appointment yesterday , She has Confirmed I actually do have PMR , she looked at the blood test my Gp did and said in actual fact you do have inflammation showing and are showing all the signs of a PMR patient, she gave me an injection of steroids and wants to see me again in 6 weeks, I am now self isolating as my immune system will be low but already I feel slightly better , she said my GP was in denial because of my age, and that some sort of infection has brought PMR on !! It was worth every penny seeing a specialist, and I wonder what would of happened if I hadn’t! Onwards and upwards ...xx
Toobusyforthis : Hi everyone after seeing my GP and... - PMRGCAuk
Toobusyforthis
Please keep us informed on how you get on with the injection - slightly unusual treatment - but perhaps that’s her way. So sure we will be interested how it goes. Good luck
Well done, right decision going private but it shouldn’t have to be like that. Main thing is you’ve got a diagnosis now you can move on. Hope your gp reflects when he sees the consultants letter.
Your symptoms should have alerted your GP to something more serious. Where was the duty of care? I hope your treatment goes well from now on.
Well done for knowing what your body is telling you and not giving up!!
When I first saw a Rheumy, he gave me an injection and asked me to report back, just like yours. A word of caution- that injection only lasted for a month after which all my symptoms came back and worse. If you find 6weeks is too long, you could make a follow up appointment sooner . This injection is probably just a test to see if the Pred. works.
I was on injections for over a year and same with me, they lasted about a month max
You might like to take a look at this:
Patients from the UK & USA have collaborated to devise and launch a Global Online Survey, which will provide data, free of charge, to Patients, Researchers and Medics. survey quantisurve.com/cgi-bin/pmr... may help reveal the cause(s) of two debilitating, life changing illnesses.
Thanks for that, just completed
Thank you for completing it - the survey has been running since August 2008.
I did it early on in my journey; would likely answer many things differently now,Btw got my Flexiseq a couple of days ago. 
Let me know if it works for you - just like it works for me. 👍 for trying it.
I will. Still learning exactly how much I need as saying the length without the thickness leaves a lot of room for error! Do you still use it twice a day?
It comes out of the tube at a steady pace.
Yes twice a day for the past few weeks as the weather has been grim. However the temp came up Monday and back to mornings only. I only put it on twice a day if at night when going to bed and undressing and pain grrr. I did not start on the once a day for about 6 months. I guess it is a 'suck it and see' job.
Ah, but how fast do you move the tube as it emerges, that is the question... . And only as steady as the hand holding the tube and squeezing 😆 It took so long to dry the first time I've become a lot skimpier already! I note the Flexiseq FAQ doesn't actually say once a day is fine, only that it has only been tested for twice daily application. Sounds like you have a system worked out; thanks for the advice.
I was told to not move for 10 minutes - not even to wash hands. That is why the osteo in my fingers improved and now I when my right ankle aches and pains............bingo flexiseq.
Mind HeronNS I have heard from a couple of people on here and they said it did not help them.................they were the only ones , the rest it all worked.
Oooops! One was me. Always was an awkward s-d!! I wonder if it would work now - five years later?
Worth a try surely...............like if at first you don't succeed etc..............but not if that try does not work...........only one more go.
Constance you are 5 years older and we all change every day. I had to have a new photo taken and decided I should now get rid of every mirror.
When at 18 I was putting make-up on and looking in the mirror. I said "I am so glad I am behind my face". My Mam laughed out loud 😊
Actually, I did try again about eighteen months ago - it didn't help! It wasn't alone - I tried everything under the sun - Voltaren, "horse balm" (really), Devil's claw, Arnica,etc etc. Perhaps it doesn't work because my arthritis is "unusual" (sero negative).
I feel the "five years older".😠 I'm not doing too badly for an "oldie" though.
Had to laugh at "get rid of every mirror".😂 I enjoy looking at myself - especially first thing in the morning, hair all over the place, one eye practically closed - gives me my first laugh of the day!😂😂😂
Beauty is in the eye......! As you've said in the past "it's what's inside that counts".
C. 💐🍀 xx
PS Anyone would think you look like a gargoyle!!!!!!!!
It is meant for OSTEO arthritis, not inflammatory arthritis as it lubricates rather than reduces inflamamtion.
Ah - that's it then! Thanks
One of my English cousins sent me a list of the ingredients (some of which are I agree questionable but you'd find in almost any otc skin product which wasn't organic) and told me to be careful. My major concern is I hope my sensitive skin won't react to it. So far so good. Two days only though.
I have had small problems off and on before GCA and Pred.
Another GCA mate had been prescribed Double Base Cream when started on Pred. It protects your skin and you use it before you wash, shower etc and then when you dry yourself you put it on again. It helps to protect your thin skin which can happen due to being on pred. It is not greasy and just disappears.
So switched to using it, no soap, no shampoo (except baby shampoo) etc for around 10 years. My GP also told me, only shower every other day or two days if possible, showering too much and shower gel etc, strips your skin of natural oils as we don't give it time to replenish.
I then found less problem with high summer sun.
In the UK, if you are on pred, it can be prescribed...........I could not be bothered and just bought it OTC.
Just in case you do run into problems, I must admit I have passed this on to many people, (pred and no pred) and to date, fingers crossed, no-one has said they had problems so 🤞🤞 for you.
So far so good. No idea which ingredients in unsuitable skin products I've reacted to, so I was a bit wary seeing the ingredient list, but I suspect I usually react to "parfum" more than anything else. This is my third morning getting up after starting the Flexiseq and I already feel better - usually the first few minutes in the morning have been exceptionally difficult. Good sign! I understand from Flexiseq communication that the product is not licensed for sale in Canada so that tells me the place to complain is Health Canada. This is the organization which told me when I complained about a totally misleading tv ad for Prolia that it did not violate any advertising regulations. In other words, because it did not promote what it's really designed to do (treat osteoporosis), but only implied it would make you feel young, it violated no guidelines. On a similar note, there's a nutritional supplement, Huel, which is not allowed to be sold in Canada, although apparently some of it is made here. It contains too much Vitamin D for our regulator and the company has dug in its heels and won't sell the product with lower amount of D. I can see Health Canada's point as all our milk is fortified, and many other dairy products are also made with that fortified milk, unlike many other countries. But on the other hand it's pretty hard to overdose on Vitamin D. And I can freely buy extra strength Voltaren without prescription, yet cannot put my hands on Flexiseq!
I am so glad that you took destiny in your own hands and got this properly diagnosed! Will you be put on tablet-form Prednisalone after the blast of steroid by injection?I am sure others apart from me, will be very interested in your progress. Keep us posted.
Not sure yet, I have to go back in 6 weeks I think she’s going to see how I feel then! She said something about I may of had an infection that brought the PMR on and may get away with just having this injection? But I suppose we will have to wait and see .
Where do they get the idea that there is a blood test for PMR and can be negative? Up to 20% of patients have ESR levels that remain in normal range (not the same thing as saying there is no inflammation) and some just don't "mount the acute phase response" as they put it.
This lady sounds sensible - where is she? Always useful to know where someone who know a bit more than aversge can be found - even if privately!
Springfield medical centre ....Dr Dayavathi Ashok...Consultant in Rheumatologist. Lovely lady extremely thorough!
She obviously fled Durham when there was a major clear out for some reason a few years ago!!! Chelmsford - must remember that.
You’ve lost me lol ??
Before coming to Chelmsford in 2017 she worked in Durham. I was told a couple of years ago that there weren't ANY rheumatologists available in Durham at the time! Never did get the gossip as to why - seemed very strange. But then, Durham was a strange place - I lived there for 10 years and we both worked at the hospital!
Oooooh I see ...yes strange! But so far I can say I’m very pleased ....watch this space x
Will she transfer you to her NHS clinics?
I think she is transferring me back to the NHS as she’s asked my doctor to do a few blood tests ...then back to see her for the results .
Hope so. And hope he has learned something ...
Daya is on the DVD. Worked with Sara, Clive et all as Registrar then Consultant at Durham.
Daya was SkinnyJohnny's first Consultant. We wondered where she had gone. Must tell SJ.
What DVD is that please ? I know someone else mentioned one but I can’t find the message
Really? That is great - she comes from a good training!
Good for you, getting another opinion!!! I really fear at times for people who are left in bad states because of wrong diagnosis by medical people who, in some cases just cant be bothered. I know from bitter experience. Hope things go well for you.
Hope everything goes well. Good for you getting another opinion. Your GP doesn’t appear to be very thorough. Let us know how you get on. Xx💐
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