Morning all
I am trying to clarify if I should have recieved a letter or text. I have Vasculitis GPA I am on methotrexate I have high blood pressure. On Vasculitis site it says for having GPA I should be high risk and looked on NHS site its not clear that I am. I also suffer with my nerves and i am very concerned about my position. Thank you in advance
I believe it is the people who are in the Extremely Vulnerable group that are receiving letters in relation to 12 weeks isolation. These are people with organ transplants, certain cancers, etc.
You are likely to be in the High Risk group, as anyone who is recommended a flu jab due to their condition/illness, is placed in this group. Whilst we are in lock down, the rules this group follow are the same as everyone else.
Thank you
The letters were supposed to arrive by March 29th in England and 30th in Scotland and Wales. That may be delayed because they are having to search manually because the digital records didn't catch everyone and that is why some have had letters or messages and others haven't.
In the meantime you should be adhering strictly to the lockdown and avoiding contact with others anyway - and if you are worried then implement the extra self-isolation precautions without being told to.
Thank you
Hi, I think anyone with vasculitis is likely to get a letter. Ive heard post is not getting through as quick as normal at the moment so your letter may arrive in the next couple of days. I have received a letter from my GP surgery and from the Vasculitis clinic I attend. Both are saying the same thing - I'm at risk of severe illness if I catch Covid-19 and that I need to isolate for 12 weeks. I am only mildly immunosupressed and otherwise fit and well so I'm sure you are in the same at risk category. As PMR Pro says assume you are at risk and act accordingly. This 12 weeks is going really drag but there is no other option. All the best. Chris
Hi Chris are you shielding? My husband also received a letter via his GP surgery I guess but we had previously been on the rheumatology web site and his score was only 1. He also received an e-mail from the department with a video regarding care etc.
It’s all a bit confusing.
We are both self isolating but not shielding.
difficult times for everyone.
Take care and keep safe
Hi Main1234. Yes, I did the same thing and came up with a score of one. I think Vasculitis diagnosis is a blanket trigger for the letter but we are all in varying states of wellness. I can't say I'm following it to the letter. I get up early and take the dog for a long walk in the countryside. I generally see no one at that time. That at least maintains my sanity and I don't see it creating any risk to me.
Thanks Chris that’s reassuring.
It’s a worry but we are staying in and sitting it out. I have stopped work and we are managing the best we can .
Hi everyone,
Are you all in the USA.
Was let go from work. I have Behcets
Stress have brought a flare up. Is there any assistance out there. ...
I'm not complaining, I know we all in the same boot.
No I’m in the UK .. what’s the situation out there for you?
Stay well and safe
No I am from UK
Great thanks
Hi, I have GPA Vasculitis and I have received a letter regarding the 12 weeks isolation from my GP Surgery so you should be getting one.
Thanks
Ok just called my docs for advice about letter this morning and she put me on hold half way through me speaking, I was not rude or unpleasant as this is a stressful time for everyone at the mo. So now I will have to call the hospital for advice, that's all I wanted. I have gpa,type 1 diabetes,asthma,a heart condition. Now feeling stressed and in limbo.
Hi I feel the same I have got a chart from cambridge Vasculitis support group which was sent to them from addenbrooks hospital so you can see what group you are in if you want it send me your email address and I will forward onto you
My understanding is if you are on immunosuppressant drugs including steroid I.e prednisolone then you can expect to be on list. So far as I can see Vasculitis and GPA are not listed specifically.
I am on Micophenolate Mofetil and low dose prednisolone and first received a text followed a few days later by the letter.
Maybe check with your GP or Consultant.
Thanks
I have also not had my letter although I rang the GP about it last week so I am going to ring again today !
Hi buster1502
I too have GPA although now am only very mildly immunosuppressed. I understand we come under the rare diseases category on the extremely vulnerable list. I received a text on Tuesday confirming I was on 'the list', the official letter confirming this on Wednesday (which came from my GP) and a further letter from the my renal consultant at Manchester Royal on the Thursday. Belt and braces!! However I did hear at one of the press briefings over the weekend that 'only' 1million letters have so far gone out to the 1.5 million affected. So I would think that you should be getting one and would query it if you don't.
Thank you
There's a flow chart that has come from the addenbrookes vasculitis clinic. Perhaps someone cleverer than me can insert it in full but basically it says you are at HIGH risk if:
Do you take 20mg or more of prednisolone a day and have done so for more than 4 weeks? OR Have you received a drug called cyclophosphamide within the last 6 months? OR Have you been taking 5mg or more of prednisolone daily for 4 weeks or longer, AND one or more of the medications in the blue box?
Meds in blue box =BLUE BOX Conventional immunosuppressant medication: azathioprine, leflunomide, methotrexate, mycophenolate, (mycophenolate mofetil or mycophenolic acid), ciclosporin, cyclophamide, tacrlimus, sirollimus, as well as Plasma Exchange and IVIg (intravvenous immunoglobulin)
Biologic/targeted synethic medications include: Rituximab within the last 12 months, Alemtuzumab (Campath) within the last 12 months; or anti TNF drugs (etanercept, adalimumab, infliximab, golimumab, certolizumab); tociluzimab; abatacept; belimumab; anakinra; mepolizumab, or any biologic biosimilars.
also high risk
Do you take ONE OR MORE of the medications in the blue box below? OR Have you been taking 5mg of prednisolone daily for 4 weeks or longer
This is on top of the list from the government re over 70 lung disease etc.
I hope this is easy to follow. I think we all know that we need to stay away from everyone else but can be a little difficult if we can't get supplies.
Take care everyone stay safe.
I also have GPA for over 7 years, I take 10mgs steroids and 20mgs Methotrexate, I wouldnt worry about the letter if you take both of these drugs then i would suggest that if you can stay in for 12 weeks......I work abroad in Oman and I am very minfful of spacial distancing......regardless of whether i need a letter from the NHS to tell me what I already know.......
hope this helps
I know Oman is low risk, but a high risk person contracting it will end up being in hospital, so stay home where you can and dont take any chances.
rheumatology.org.uk/News-Po...
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rheumatology.org.uk/Portals...
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