Covid vaccinations : Hi My mum is too... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Covid vaccinations

Ajack profile image
17 Replies

Hi

My mum is too nervous to have the vaccine due to the lack of information on this at the moment for people with scleroderma. She has limited cutaneous systemic scerlosis, pulmonary fibrosis and COPD and a very irregular heartbeat. Has anyone with similar condition/symptons to her had the jab (and which one) and were there any side effects after having this? She has had blood clots before so is very wary about the AZ.

Thanks appreciate any advice.

Alex

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Ajack
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17 Replies
JennerLayne profile image
JennerLayne

I took the Pfizer jabs just after learning I had Sine Scleroderma (affects mostly organs), Primary Biliary Sclerosis and Autoimmune Hepatitis. My Hepatologist and Rheumatologist suggested I get the shots prior to starting immunosuppresents AZA, Budesonide, and Ursodial. I also have GAVE Disease (gastric antral vascular ectasia) and came through with no side effects.

Best to you and your mum!

Ajack profile image
Ajack in reply to JennerLayne

Ah thank you very much for replying Jenner. She is maybe swaying more to having the Pfizer ahead of AZ but can find so little info on the risk of having it with scleroderma 👍

Most people I know from scleroderma and other autoimmune groups have had both vaccines and been absolutely fine.

Ajack profile image
Ajack in reply to

Thank you

pino99 profile image
pino99

Hi Ajack, I have scleroderma and interstitial lung disease and I had both doses of Astrazeneca with no problems other than a bit of a headache on the first day. That said, I've never had blood clots.

Pfizer seems a good way forward for your mum and the danger of getting covid with lung disease is hugely larger than the risk of an adverse reaction to the vaccine, so I hope she goes for it :)

Pino

LMB1366 profile image
LMB1366 in reply to pino99

Hi this is where I am now in hospital with Covid due to my lung disease I am here on steroids and oxygen. Very wise to have the vaccine. Hope she does.

Ajack profile image
Ajack in reply to LMB1366

Oh I wish you a speedy recovery and hopefully you will be out of Hospital as soon as possible x

Ajack profile image
Ajack in reply to pino99

Thanks for your message. She definitely seems to be thinking about going ahead with it more now after seeing people’s comments on here 👍

elprof57 profile image
elprof57

I subscribe to what 282523 has stated.

NSV69 profile image
NSV69

The chances of becoming seriously ill and ending up in hospital are a lot higher if you have not been jabbed if you already have serious underlying health conditions.

Redwine53 profile image
Redwine53

I have systemic sclerosis, lupus and myositis and have had both of my Pfizer vaccines in January/April. I seemed to ache and be tired more than usual for a couple of weeks after the second jab, but on the whole I was fine. Much better to have the vaccine than to have COVID. Good luck to your mum.

Ajack profile image
Ajack in reply to Redwine53

Thank you very much for advising 👍

LucyJean profile image
LucyJean

Dear Alex, It is not surprising that your Mum is frightened. I was terrified what type of reaction I would have and whether having the jab would make me worse. It is especially difficult when there has been so much more publicity about side effects. The best thing to do is for your Mum to have a conversation with her Consultant (or at least the one she sees most often) she probably has someone who deals with her lungs, and possibly someone who deals with her heart? They should know her state of health and be able to weight up the best course of action. It is very likely that they will advise her to have the jabs and hopefully hearing it from a medical professional that she trusts will persuade her to have it. It is easy for us all to say 'have it', but we don't know her state of health so really she should speak to people who do.

However, the risk of serious disease from getting Covid is probably always going to outweigh any side effects of the jab in most people, especially someone with lung and heart involvement.

There is not always a choice of the type of vaccine you get in some places, but Pfizer is probably the better option as it gives more global protection (at least according the Rheumatologists I know). If you do have a choice.

All my best

Lucy

Ajack profile image
Ajack in reply to LucyJean

Thanks Lucy, this is really helpful 👍

catkar profile image
catkar

Hi Ajack,

I am totally shocked at all the people on here who have had the vaccines ...... I have Crest, Sjorgrens, osteoarthritis, Hypertension and Glaucoma, I am NOT having any vaccine , I don't want to influence you in any way , but this is an experimental drug the results of which won't be known till 2023, there have been many many adverse reactions which have reported on the government 's own Yellow card scheme (the reporting site for adverse effects) . It is widely reported that only 7/10% of adverse effects are being reported ..... These vaccines have NOT been tested on people prior to release, in fact we are the guinea pigs ! There are lots of medical professionals who are speaking out about not having the vaccine but these are silenced and NEVER get air time on the main stream media ...Tried googling Dr Mike Yeadon who is the retired CEO of Pfizer and Dr Del Bigtree look into any information BEFORE taking this drug ....... I wish everyone well and am only concerned that people are taking this without investigating fully ....

Sending love Cat

Ajack profile image
Ajack in reply to catkar

Thanks Cat - really appreciate your comments. I think my mum has serious reservations about it like yourself. It is just really weighing up what is the biggest risk as she is just going to have to shield the rest of her life without it x

catkar profile image
catkar in reply to Ajack

If your mum has serious reservations then you should be cautious .... I cannot say enough this 'vaccine' is still in the experimental stage and the long term results are not known ..... I am sending lots of love to your mum and you , its a difficult time ...

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