I am on mycophenolate and steroids.
I spoke to my drs and they checked my records and said that because of my age I am still 7th in the order for the covid vaccination? Is this correct I am 62.
I have never received a shielding letter?
I believed that as I was on immune suppressant tablets I was now on the clinically vulnerable since the list was updated on 20th December 2020 in the UK
Can someone advise me please.
I take steroids and mycophenolate.I've been put back into shielding as I'm classed as clinically extremely vunerable so I'm currently 4th in the queue.did you ask your gp or consultant? My only thought is the length of time you've been on them have you started them recently? X
This particular medication since beginning of summer, drs said my records had been updated. Perhaps if I had a letter I could take to drs.
Could it be because its dle rather then sle 🤷♀️.....it's just a random thought.what is your steroid and mmf doses ? I'm on 2gms of mmf and 15mgs of steroids but I am steroid dependent x
After your advice I dropped a letter to my surgery pointing out the medication I am on. By 8.30 this morning I received a text asking to shield then another moving me to Group 4 for the covid-19 vaccination.
Pleased to hear you now have some clarity 🙌 I know we shouldnt have to do it but sometimes youve got to be pushy and shout abit louder .I often say be confident in how you feel and in your approach by not taking no for an answer.xx
Hello Jadelee28
I have SLE and I take 3g of MMF a day, plus Hydroxychloroquine and Mepacrine etc etc a day.
I’ve had a shielding letter and am guessing I’m in the 4th category. I’m 46 years old.
I run a support group for people with lupus, some got shielding letters and some didn’t. Which is fine unless you need one for an employer to prove you need to work from home - and until you want to be in the right group to be vaccinated. The system hasn’t been foolproof.
I told my members to contact their GP and rheumatologist and Rheumatology Helpline to ask. Hoping that one would come through and add them to the shielding group. Many GPs have made excuses that they can’t add people to the list, but apparently this is wrong.
I’m sorry that you are in this position and will have to chase it yourself.
Let us know if you’re successful.
Best wishes
Wendy
I have been on this particular medication since the beginning of the summer. Had DLE since 2010Spoke to drs receptionist she confirmed that she had updated my records and it made no difference to gaining the vaccinations.
She also said that they cannot change the order.
What can I do now?
HelloThat’s frustrating! You’re not asking them to change the order of the vaccinations!!! Sounds like a typical doctors receptionist to me, not really listening.
I would contact your rheumatologist (or dermatologist if that’s who started you on the MMF) via their secretary or via the Rheumatology Helpline and ask them about whether you should be on the shielding list.
If that doesn’t work, put it in writing. A written query would have to be as were by a GP (not a receptionist) or by rheumatologists themselves.
I can’t think of any other way of dealing with it.
Are you currently having to go to work? Or are you working from home?
Also, final thought, what dosage of MMF are you on? Wondering if that makes a difference?
Sorry, not very helpful.
Best wishes
Wendy
Hi I have been put on steroids and immunosuppressants over past few months and as such come under the criteria for being severally clinically vulnerable. I asked rheumatologist about wether I should be in shielding group . She confirmed I should be , she also told me it’s the GP’s responsibility to add me to shielding register so I emailed surgery the email from her and then was informed they then added me to register. Hope this may clarify
Thank you for clarifying.
This is all very confusing.
I’ve heard of consultants telling patients that their GP must add them to the shielding list.
And many GPs telling patients that they can’t add anyone to the list, only consultants can do it,
Still very unsure.
I thought officially, consultants did a list from their patient lists but GP could also add.
As clear as mud.
I think if I were in this situation I would contact both, then hopefully one of them would help.
Wendy
I must admit it take a bit of too and froing between them both until I got it clarified !! We shouldn’t need to do this either !! My practice initially said there was nothing else they could do , contact rheumatologist but when I sent them her response , suddenly surgery added me to list. Then yesterday I get a phone call from dmard practice nurse who said she can now do it , though she had no idea about 3 days before that !!!
After your advice I dropped a letter to my surgery pointing out the medication I am on. By 8.30 this morning I received a text asking to shield then another moving me to Group 4 for the covid-19 vaccination.
That’s brilliant. I’m so glad they’ve added you to the list. What a relief.
Jadelee -
I don’t know the UK tiers for Covid vaccinations. You might want to look at what Lupus UK has put out in terms of covid risks and lupus. Recommendations change as new data comes in. It could be the dose of steroids you are on that determines risk as well as lack of organ involvement.
The big risks with lupus and Covid seems to be kidney and lung disease as well as high dose steroids.
Hope that helps.
K
After your advice I dropped a letter to my surgery pointing out the medication I am on. By 8.30 this morning I received a text asking to shield then another moving me to Group 4 for the covid-19 vaccination.
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