Vaccine, ILD & immune suppressants - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Vaccine, ILD & immune suppressants


Hi, anyone any info on if ILD pushing us up the queue for vaccine? I’ve just read article we are 60% more likely to die from covid but yet still way down list particularly in Scotland.

Also any advice if it will even work with immune suppressants? I am on highest dose of mycophenolate.


25 Replies

Hi my rheumatologist said if I was in good health for my condition and was not unwell then it was up to me to get it. But my GP has said I am on the vulnerable list so I would be asked to come get it. I have never had a letter saying to shield ever.

momo17 in reply to Joan59

Hi Joan. Thanks for your reply. There seems to be so much different guidance! I was on the shielded list and constantly receive letters but no word of vaccine. Did your doctor mention the effectiveness if you are on immune suppressants?

Joan59 in reply to momo17

No he didn’t sorry. Unfortunately I had to come off all immunosuppressants because I had 5 bouts of chest infections in one year ending up with pneumonia a couple of times and hospitalised for it too. So she rheumatologist said they were preventing me from getting well each time I had an infection. X

momo17 in reply to Joan59

Oh gosh, that’s really unfortunate. Hopefully the vaccine will work well for you tho. Good luck with it. X

Joan59 in reply to momo17

You too x

I have had a letter from the government each time there is a lockdown telling me i am on the extremley clinically vulnerable list. The letter which i have just received has said that i will be prioritised for the vaccine. I take immunosuppresants and was told it was essential

momo17 in reply to pinkcat26

Many thanks for that. Sounding positive. 😀

I’m on the highest dose of mycophenolate with ILD.I am clinically extremely vulnerable.

Clinically extremely vulnerable people are 4th in line on the government charts.

1st NHS Carr home staff etc

2 over 85

3 over 80

4 over 75 and clinically extremely vulnerable.

Sorry this is from memory so the ages are approx.

My lung consultant told me last week by telephone consultation that I should be vaccinated during February.

It really makes little difference to me at the moment as I’ve been shielding since February and me and my family haven’t left home except for exercise from our front door in all that time. Our cars are off the road too.

Even when it is three weeks after my second jab I will not b able to suddenly start living as I could transmit it back at home to my husband and daughters, young adults who have sacrificed so much to keep me safe.

Stay safe and keep faith. Best wishes x

Many thanks for getting in touch. Did your lung consultant mention the effectiveness of the jab with being on immune suppressants? There is word they will lower the immune response of the vaccine and this is what worries me as I just wonder how much protection we will have n still be very high risk.

He never mentioned the vaccine efficiency with immunosuppressants but the gov website does say it is lower and therefore precautions should still be taken.Like you I’m on maximum dose of mycophenolate and have been since it became available. Following this I think if I’m out in public once the pandemic is over I will still wear a mask etc.

After both jabs I will continue to shield until my family are vaccinated and continue to be very cautious.

Good luck and stay safe x

Yes I know. Having read the statistics on mortality rates with ILD it’s very scary. Like you I’m thinking masks etc will be the way for a very long time.

I also know I’ve not had a cold or chest infection for 10 months due to Covid shielding, that means no scarring of the lungs and I don’t ever want to have another cold, so masks and caution. I’ve always had my flu jab and had my pneumonia jab, now I just want to stay safe for myself and my family x

The list has been re-done as of 30th December - see here

There is quite a lot of discussion relating to the choices - probably worth reading.

1 residents in a care home for older adults and their carers

2 all those 80 years of age and over and frontline health and social care workers

3 all those 75 years of age and over

4 all those 70 years of age and over and clinically extremely vulnerable individuals[footnote 1]

5 all those 65 years of age and over

6 all individuals aged 16 years[footnote 2] to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality[footnote 3]

7all those 60 years of age and over

8 all those 55 years of age and over

0 all those 50 years of age and over

It is estimated that taken together, these groups represent around 99% of preventable mortality from COVID-19.

momo17 in reply to Poppy221

Thank you!

momo17 in reply to Poppy221

Just read that over. Thats really helpful. Particularly the points on the immune suppressants. Glad they got a mention n hopefully they are working towards a solution for that category of individuals. Many thanks

Thank you I knew I’d seen it x

my doctor has adviced me not to take the vaccine because of crest. stick with vitamins right now. taking wild lettuce extract for pain works great. vit-c and zinc lots of it. eat a good diet also. hope that helps but listen to your doctor first.

Thanks for your reply. That’s interesting. What kind of lettuce extract do you take? I’ve tried everything for pain. Nothing works!

wild lettuce extract from ebay, mt rose herbs works great try it let me know i have tried pain meds now immune. so i tried the lettuce 10 drops bang pain gone. julie

Thanks. I’ll check it out x

/I am puzzled - why not take because of crest? I have crest (limited systemic sclerosis) and my rheumy says I should take it.

Hi, I had the Pfizer covid vaccine 9 days ago, I have CREST (limited systemic sclerosis) and work in face to face healthcare. Unfortunately no one knows how effective any vaccine will be in anybody as we will all react differently. If you are immunosuppressed then you may produce less antibodies than a ‘HEALTHY’ person but SOME protection is better than NO protection. My rheumatologist was very excited about the vaccine when I spoke to her in November and said that she couldn’t see a reason why the majority of people with autoimmune diseases shouldn’t have it.

momo17 in reply to Midgebite21

Thank you for that. That was my thinking. It’s got to be better than nothing! Glad you will now start to feel a bit safer in your work. Take care

My husband is on multiple immune suppressants (has scleraderma and fasciitis from graft vs host disease) and will not be getting the vaccine. His doctor says the vaccine will not make a difference because of his immune suppressants. He has also had multiple anaphylactic reactions to meds so he is safer not getting the vaccine. We are fine with this. Because of the experimental nature of the vaccine, we did not feel comfortable with it anyway.

momo17 in reply to Glees

Thanks for your reply. It would appear it’s very much based on the differing opinions of the doctor you have. I have tel consultation now with my rheumatologist on 26th so hope to get some more info then. Stay safe both of you

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