Anyone who has had the vaccine and immunosuppressed?

Oh, Marydoll I feel your concern over this and sincerely hope that someone can come up with a safe answer x

Marydoll I feel your pain! I have been able to establish that it would be better for me to have the AstraZeneca jab but my gut instinct is that I will need to have it timed between infusions to get the most benefit from it. No one seems to know so I'm approaching the manufacturer of my biological to ask them. The pharmacist at your hospital may be able to help too.

Marydoll could you ask your kindly retired specialist by email for his thoughts? His secretary would supply the user name if you don’t already have it.

I can understand your concern and the need for information. Good luck. x

Thanks, Urmston I have already left messages. Everything is going to voicemail. It seems they are overwhelmed.
What I have managed to learn is that therapy may need to be paused for four weeks after receiving the vaccine or efficacy may be reduced. Another thing to deal with.

I have just found out that people with blood cancer can have the vaccine, I was worried I couldn't. According to the information I was given if you are on chemotherapy or immunosuppressed it may not give you the same level of antibodies but some are better than none! I am still trawling through the information so if I find anything else out I will let you know Marydoll. Good luck with getting an answer from the doctors, my consultant hasn't got back to me either! I got the info from a friend who is a doctor. He isn't a specialist but sent me his latest information.

Marydoll

I'm in the same situation as you and had considered posting this question too. I only saw your post late last night so am posting now to try to get this moved up the GN page.

I am currently doing a bit of research but need to get on the laptop instead of my kindle. I've seen something on the ITV news website but don't seem able to be able to copy it. I took a couple of screen shots and will try to.make sense of it later on.

NannaLyn, I got a call yesterday from the hospital to say my rheumatologist had looked at my notes and decided in the light of my heart attack few weeks ago, I was at even greater risk of dying of Covid!

He decided that the risks of getting Covid, outweighed the risks of the vaccine, so I should have it.
I also asked if I had to stop the biologics, as some research had suggested, but the answer was keep taking them. I did read that biologics can reduce the efficacy of the vaccine, but more research is needed.
The only positive note is that the biologic I take is Tocilizamub, which is being used in Covid ICU to help critically ill patients. Swings and roundabouts.

A poster messaged me to say that quite a few of the blood cancer sites have information, so this may help your research.

Please come back and let us know what you find. I will have a look at the ITV website too.

My Rheumatology Dept nurses team sent me the following , hope you find it informative if you haven't already seen it. I know you are not on Methotrexate, but I am and have had the Oxford vaccination. They warned me that the immunity gained might not be great, but if I catch the virus I should be less ill.
www.versusarthritis.org/covid-19-updates/vaccines-for-covid-19-your-questions-answered/

shysal, thank you so much for that. I hope to have the vaccine in the next three weeks.

Following with interest
Best wishes to Mary, Lyn, Sal and everyone else in this situation.
Thank you for your research

My RA team informed me I should check it is not a live vaccine before I have it but am still waiting for the call,
told to carry on as normal with my injections.

I read that the Pfizer is a dead virus, and Astrazeneca is live but modified so that is cannot do any harm in the body. However, I did hear an 'expert' on TV advising against anyone immunosuppressed receiving the AZ. Apart from her everyone else is saying either will be safe.

I've just found this on the MS Society website.
Are the Pfizer-BioNTech and Oxford-AstraZeneca coronavirus vaccines ‘live’ vaccines?

The approved Pfizer-BioNTech and Oxford-AstraZeneca coronavirus vaccines are not ‘live’ vaccines. Neither is the third vaccine that’s approved, made by Moderna.

A ‘live’ vaccine contains a weak version of the virus or bacteria they prevent. Many neurologists would suggest you avoid 'live' vaccines if you’ve recently taken certain DMTs or high-dose steroids. This is because although the virus or bacteria that the vaccine contains is weakened, there is still a small chance that it can cause disease in people with immune systems that have been weakened by DMTs.

The approved vaccines for COVID-19 work in a different way.

Certain drugs eg protein inhibitors, have been researched as possible treatments for Covid, but the research was not undertaken to any great depth, so I understand.
If anyone is taking these drugs I did wonder if they may dampen down the effects of the vaccine and it may not work as well as it should.
Does anyone know?

Quick update.

Having read the replies, I googled "Covid vaccine and non hodgkin lymphoma". There was NEW info on the Lymphoma Action website. (lymphoma-action.org.uk/covid-19-vaccine) It's the page that gives Q&As from the DHSC.

The question, quite near the end, is:-

Q. What about people who are immunocompromised who can't benefit from a vaccine?

A. (Briefly,) there is an antibody treatment being developed by AS which combines 2 monoclonal antibodies.

This is basically what I read on the ITV news website.

I'm 73 and I have Sjogren's Syndrome, an autoimmune condition. My Rheumatologist prescribed me Hydroxychloroquine. Sjogren's made me more susceptible to Non Hodgkins lymphoma.

I have had 3 episodes of Follicular Lymphoma in the last 2 1/2 years. The first (in my neck) resolved itself spontaneously without treatment. The second, in my groin and lower abdomen, was treated with R-CVP chemo but when the treatment was cut short last March, I had another PET scan which showed it had spread to my stomach and was put on a more aggressive chemo regime.

I have recently finished 6 months of Bendamustine and Obinutuzumab. The last scan showed I was in remission and I am now due to start 2 years of Obinutuzumab maintenance therapy at 2 monthly intervals.

Trouble is, these last drugs caused my neutrophil levels to drop below 1 and I have to inject myself with filgrastim to stimulate my white blood cell production after each infusion. My platelet levels also drop too, so I'm severely immunocompromised! I also have to take Acyclovir for the rest of my life to prevent me getting shingles again and whilst I'm having Obinutuzumab, I have to take antibiotics on Mondays, Wednesdays and Fridays.

My next Haematology Consultant's appointment is due but I think, as someone else suggested, I'll try to contact the Haematology Pharmacist for advice about the vaccine.

My partner is currently having chemotherapy for bladder cancer and is also temporarily taking prednisolone (a steroid). His oncologist told him yesterday that there will be no problematic interraction between any of the vaccines and his current treatment, so he should be vaccinated as soon as possible.

The difficulty is that we can only offer general advice on this thread, everyone of us is different, with different needs.
I only got a definitive answer yesterday because my consultant, who is new and doesn't know me, read through my record and made a decision based on my comorbidities and medication.
It is certainly not easy!

Marydoll

Hope you are recovering well from your heart attack. What a nightmare for you.

I think we should all keep researching and post any new findings. There doesn't seem to have been that much research into people who have compromised immune systems yet.

There are so many cancers, both conventional and blood, which require different treatments so what might be ok for one of us might not suit another.

Stay safe everyone.

NananLyn, thank for your good wishes. Not exactly the best time to have a heart attack and be admitted to a hospital bursting at the seams with Covid patients and being unable to shield.

I too have Sjogrens and was on Hydroxchloriquine for about twenty years until my heart condition was diagnosed a couple of years ago and the cardiologist stopped it. I have multiple comorbidities and fulfil three different criteria for shielding, which makes a decision about the vaccine so much more difficult.

My main concern is about the impact of my medication on the efficacy of the vaccine, but some protection is better than no protection.
We have made it this far, so not much longer now. Keep well fellow immunosuppressees! (I made that word up! ?)

Hello again

This lunchtime I had a text from my GP surgery offering me a Covid vaccination next Thursday, 28 January. My dh had his last week and they were using the Pfizer one, so I assume this is still the case, although I will check up on this.

Following Mamissimo's advice, I have just managed to speak to my Haematology Pharmacist. She told me that the guidelines are changing daily but at the moment they recommend the Pfizer vaccine. (She said the current thinking is that there is a possibility that one could actually catch a cold after the AZ one!)

Because I had a bad reaction to a Tetanus vaccination several years ago she is going to speak to one of the Haematology doctors to see if they think it is ok for me to go ahead with the Pfizer vaccination. She hopes to call me back later today. I told her I also had reactions to medicines in tablet form but she wasn't concerned about these.

Will update when I hear back from her.

NanaLyn, good news. However, we shouldn't have to be chasing up clinicians for advice, they should be contacting us.

It is all a bit confusing. I have had Hodgkin Lymphoma,no longer on any treatment but told I needed to shield from the beginning of the pandemic.
Both on the Lymphoma web site and the Blood Cancer uk web site the advice seems to be that both the vaccines in use at the moment and the Moderna one when it arrives are safe for patients who have had a blood cancer as none of them contain live vaccine.
If you are still having active treatment that might complicate things.
I’m hoping to get the vaccine soon though things are very slow in my area and even after the vaccine I won’t be going anywhere in a hurry.

I’ve just spent 45 minutes typing this update on my Amazon Fire and instead of hitting “post” I hit “search” at it wiped everything I’d typed. I’m now on my laptop and will save this before I post it.

Latest update.

The Haematology Pharmacist phoned me back just before 5pm. She had spoken to her colleagues and to several Haematology doctors as they all work together in the Bristol Haematology and Oncology Centre. (BHOC)

The general consensus of opinion was that I should preferably have the Pfizer vaccine, rather than wait for a more suitable treatment, like the one currently being developed by AZ, to be approved. However, if my GP Practice was now issuing the AZ vaccine, I should go ahead and have that one. (She confirmed that the AZ virus isn’t live.) She said that I might not have such an effective response to either vaccine because I am immunocompromised, but that it was better to have either vaccine than to contact Covid, especially as today Sir Patrick Vallance has stated that there is some evidence that the new strain is more deadly.

She thought that as it is 11 weeks today since my last 2 chemo sessions my neutrophil levels should have improved. My Obinutuzumab Maintenance Therapy is due to start on 9 February but that can be delayed if necessary.

I am to mention to my GP the reaction I had to my Tetanus vaccine several years ago but in the opinion of the clinicians at the BHOC there shouldn’t be a problem as I didn’t have an anaphylactic shock.

Marydoll. The reason that I contacted the Haematology Pharmacist was because she can access details of all the treatment I am receiving over several departments in the BRI as well as all my current medication, which she could check for contraindications. I hadn’t thought about the pharmacists until I read Mamissimo’s thread. I agree we shouldn’t have to chase up this information but the advice about the vaccines seems to alter on a daily basis. The trouble is that those of us who have suppressed immune systems are in a minority.

I guess I’d better go online and actually book my appointment for next Thursday. I hope that all of you who are waiting for your vaccines get your invitations soon.

Take care and stay safe.

NanaLyn I have pmd you.