I have had PMR and GCA for 3.5 years.Was on 40 mg of Pred. and have tapered, very slowly down to 6.5 but I am now unwell again with painful legs and arms, not neck or shoulders. GP recommended I go back up to 15 mg as she thinks it could be another flare. I am 61 years old.
Yesterday I told my school that I was going to self isolate as I am in the "at risk" group and that I would be doing so for the 12 weeks suggested by the Gov. They are fine with this.
Two questions: Should I ask my GP for proof of this? It's hardly a "sick note"! They only last a week! Does anyone have experience of this? What should I ask for?
Secondly: Was I too hasty to put myself in this category? I did not ask my GP if I am immune-suppressed enough to fall into this category? I get the NHS Flu Jab because I make a point of asking for it. They gave me the pneumococcal jab too this time. I don't know if other vulnerable people get called up for their jab or if everyone has to initiate this.
I want to do the right thing. I feel nervous that I've over- reacted and that the GP will poo-poo my need for isolation and certification.
Thank you for your comments and experience.
AlideJ
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AliDeJ
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See if this helps...it has links to gov advice. Your employer has a duty if care. Your Dr doesn't have time to be writing up everyone if not required immediately you still have SSP surely and you should have the period when no sick note required to sort it out stress won't help you so print off the legalese on the links for employers and hand it it. Via email??
I guess you have to ask to see where you stand. You may find your employer is fine but you need certification for sick pay. 6.5mg isn’t terribly immunosuppressing as doses go but you may need to increase if you have PMR symptoms. In any case someone’s vulnerability needs to be assessed taking all aspects of the medical history. You do need to speak to your GP and your employer rather than trying to second guess them and getting yourself into a stew.
You seem to have forgotten that you are not reducing relentlessly to zero at any point - you are tapering to find the lowest dose that works as well as the starting dose - and you probably reached that at the last dose you didn't have aching legs.
I'm not sure you really need to go back to 15mg, adding 5mg for a few days until the aches improve and then dropping to the dose where you were fine would probably be all you need. If 7 or even 7.5mg is enough that is what is regarded as a physiological dose, about the same amount of corticosteroid as the body requires to function anyway and if you reduce further, the body must start to produce its own corticosteroid, cortisol.
Whether that makes you at great risk I don't really know - and I doubt anyone else does either.
Thank you PMRpro. You are right of course. I had completely forgotten that.
My Rheumatologist appointment was postponed for another 6 months so I could not ask him.
I called his department to ask about Alendronic acid. No reply. I've just stopped taking it because of stomach pain (GP said so)There has been a bit of bone density loss, seen on a recent DEXA, but it is still acceptable. However, with my recent flare and increase in steroids (I'm going to try at 10 mg instead of 15) the GP feels I need something and "all alternatives can only be given by the hospital."
Yes I had a baseline test three years ago when I started on 40 mg of pred. and compared to that I have lost a bit...sorry can't recall the figure. Think it was minus 1 now.
Minus 1 point what though? minus 1 figures are all osteopenia and anything better than -1.6 is still not worthy of bisphosphonates. In fact, -1.0 is normal!
They will pay SSP from day 1 as I understand it rather than day 4. If people are on SSP.
Try to relieve the stress you are putting yourself under.........it is difficult to do, but if you look at these two links, you might just find they help. Yes, I am an oldie and I can do a few of the sitting ones.
My husband has Type 1 Diabetes and with my health issues as well he has chosen to self isolate from today . He is Head of Maths in a Secondary School.
His Headmaster said that these decisions are currently at the discretion of the Staff Member , but if you have underlying health issues that qualify as affecting your immunity , or care for someone in this category , you have the right to choose to self isolate without being financially penalised in any way.
The Head himself has also had to self isolate because his daughter has a fever.
Ten other Staff members have already isolated .
If you hadn't already shown or explained to your Head or Senior Management that you have PMR , GCA and are on Steroids you should do so now. You do not need a GP letter but you could show them your prescription and evidence that steroids can affect your immunity if they are querying your right to protect yourself.
All Unions are ready to take up your case immediately and report school behaviour if they try to prevent people from self isolating since the new instructions yesterday .
Schools should know which Staff Members have underlying health issues and should be expecting them to begin to self isolate from now , especially if they are over 65 or have any dry cough or cold symptoms.
The ferry company that runs boats here have brought in that passengers have to stay in thier cars for crossing and passenger deck will be closed on 4 crossings a day but this will increase .
We also have high speed foot passenger service same company so I imagine at some point that will be restricted.
Its like living in a different eerie world .
Nothings changed indoors but outside its so strange.
I am so glad I have my Son at home this week or I think I would be a nervous wreak .
On BBC Breakfast yesterday a health official did actually clarify the term at risk and which underlying health issues were important more clearly than any other.
He specified , when asked the question about Diabetes by a young person that you are classed in the at risk category and should take steps to self isolate if you are over 18 and you are recommended to take the Annual Flu Jab , even if you choose not to take it . Or if you have underlying health issues and get the annual flu jab under the age of 18.
I am going shopping tomorrow morning early but my Son is coming down to meet me to help me home as its all uphill and I normally get a bus.
We hope to go just to Pounshop today but waiting for a delivery before we go .
So if you see a lady wrapped in cotton wool inside a big bubble with a handsome Man by her side it will be me .
My next door neighbour has just given my Son a bunch of flowers for me .
What a kind thought
A lady walking her dog past this morning never seen her before ,I was just standing at my front door. Called out and said are you Socially isolating turns out so was she.
She too thinks its weird but neighbourly spirt is great
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covid booster - adverse reaction? 
Very Depressed
slightly anxious and just looking for moral support 
GCA Tapering Advice
A neurologist in Greater London
