Anyone who has had the vaccine and immunosuppressed?

NanaLyn, thank you for taking the trouble to post this.

I don't know if this tip will work with a Kindle. If I'm in bed, on GN and typing a post on my tablet, I press on the screen and get a message, which includes, select all, I do that and then choose copy. That way if I lose everything I have written, as I often do, it's save on the clipboard, I then choose paste and retrieve the lost message.

Good luck for next Thursday and please keep us updated.

My PC is so much easier to us, but I'm lying down when i read GN.

Morning Marydoll.

Thanks for the tip. I'll certainly try it.

I've booked my appointment for 10.50 on Thursday. I'll let you all know how I get on.

By the way, I have a phobia about needles!

Stay safe.

Oh dear! It will take seconds! No pain, no gain!!! ?

I have to inject my medication, hope you never need that one. Good luck for Thursday.

Funnily enough I can cope with my chemo infusions once they manage to get the cannula into my tiny wobbly veins. I have a list of "good" and "bad" chemo nurses - they know who they are!

The filgrastim injections I have to give myself most months are in prefilled self retracting needles which are very tiny and go on my fatty tum. They don't really hurt once you psych yourself up to stab yourself. It's the BIG (ugh) needles that they use to inject into muscle which I hate. I do wish they'd stop showing them so much on the television!

Morning all

Just having a coffee after returning home from having my Covid vaccination. ? Our GP practice was using the AZ vaccine today. The syringe and needle were very small, not like the ones they keep showing on the news. It didn't hurt at all and so far I feel fine.

Hope all of you anticipating receiving your vaccinations get them soon.

Good news indeed!!! X

My BIL is is immunosuppressed having a particularly vicious form of RA - he injects a powerful expensive drug each month dont know which one but he has had his vaccine and is fine and happy. DH has had his - he is immunocompromised not having a spleen and he is fine. I am immunocompromised and have CKD and I shall jump at the chance to have mine.

I had the AZ vaccination at my GP's yesterday - tiny needle and so far no side effects. I'm on the old school live biological Remicade and we timed the vaccination for halfway between infusions. Very glad to have received it.

I’m on biological treatment for inflammatory arthritis. As is usual with RA I have other autoimmune conditions, connective tissue disorder, sgojroens syndrome, Reynauds etc. I also have atrial fibrillation. I’m booked for my first Covid injection tomorrow. My specialist nurse confirmed it’s not a live vaccine

Great news Mamissimo!

Marydoll, I’d been injecting the Toculizimab for nearly a year when the first lockdown came. The doc at the hospital told me that they really only recommend that you take it for a year, but meantime, I’d just to reduce the injections to once a fortnight. She did also tell me about it being one of the drugs being used to treat Covid.
I would like a blood test just to check, but apparently that’s not happening.

Daddima, I have been told today that I will be on Toculizimab indefinitely and no stopping or reducing dosage before receiving the vaccine.
I think it depends on what condition it is prescribed for.

I hadd a further set of blood tests done today to check if there is any liver or kidney damage. The good news is that the bloods done in Coronary care the other week showed that my inflammatory markers had dropped due to the treatment, which is great news.

Delighted to hear it, Marydoll. I’m considering asking for bloods to be done, as they’ve only been done once in the last year, whereas before it was fortnightly. I’ve had to stop many drugs before because of kidneys being affected, and I had six days in hospital because I’d no white cells.
Ach well, just hang on in there!

Good idea Daddima. I don't trust my surgery anymore, although I previously had a great relationship with my GP.
I found out my RA consultant had contacted my GP last year to alert him that he had concerns about my heart. My GP did nothing and I ended up having a heart attack.
I have decided that I will be proactive from now on.

Sympathies to you all ladies, I know how you feel , for the last 10 months every call to my Rheumatology dept has been an answer phone message saying I shall be called back - I haven’t , not once

Nanna58

Do you have a named Rheumatology Consultant? If so, may I suggest you telephone his/her Secretary and have a word with them. I have done this in the past and found them really helpful.

Good luck!

Marydoll

Glad to hear about your blood test results.

I've had problems with my GP practice. It is now part of a much larger group of surgeries and at the moment there are 8 doctors on maternity leave, including my two preferred doctors who are absolutely brilliant. (My original named GP spent about 10 years denying I had Sjogren's. Arrogant man! )

I spoke to different GP last week concerning my vaccination and she promised to look into my query and get back to me before my vaccination last Thursday. Needless to say she didn't. Will ask to speak to a different doctor next time.

I have managed to change the telephone consultation with my Haematologist next Friday to a face to face, as suggested by the Haematology pharmacist. I hope she will be able to put my mind at ease.

Take care and stay safe.

I have Primary Sjogrens Syndrome and have been on Methotrexate for a very long time. My consultant and specialist nurses are fantastic.
A nurse called me as I emailed with a number of questions regarding the vaccine. She told me that the Oxford vaccine is best for me, but take whichever is offered. I asked whether to stop Methotrexate for a short time prior to vaccination to allow my immune system to recover somewhat and she told me the current advice is not to do this. However, interestingly, data is being collected as to whether this will be recommended in the future and she gave me the following website which is updated regularly for clinicians to keep abreast of findings.
This is htpp:/arma.uk.net/covid-19-vaccination-and-msk.

I'm off for my vaccination in an hours time. I'll still have to continue to shield, but it gives me hope that should I catch it, there wont be a poor outcome.

Marydoll I think we have discussed before that we have similar long term health conditions, I am going for my vaccination this afternoon and will post again later.

(For reasons best known to our local health board, my husband received notification of his appointment on the same day that I received mine, but his was for next week at a vaccination centre).

twinnytwin

Thanks for the link - Very interesting article. As my Haematology Pharmacist said, the recommendations seem to change on a daily basis for us immunocompromised people.

I had a dose of methotrexate with my 4 weekly chemo regime (Bendamustine and Obinutuzumab) for my Follicular Lymphoma. I'm on Hydroxychloroquine for my Sjogren's.

I had my last chemo cycle (of six) in November but am due to start Obinutuzumab Maintenance Therapy on 9 Feb. I need to talk to my Haematologist about the pros and cons of delaying the start of this treatment until after my second Covid vaccination because my neutrophil levels are so low. This Maintenance Therapy is given every 2 months for 2 years.

Good luck with your vaccination. I've had no after effects since my AZ jab last Thursday.

Thanks to all who have contributed to this thread. it's good to support each other.

There is message on our RA helpline saying that staff are swamped with phone calls and it can take a week to get back. The specialist nurse got back to me in a day, despite being very short staffed.
I too have often relied on the consultant's secretary, when I couldn't contact anyone. She has been known to run along the corrider to the ward to get me advice.

I was told yesterday to take whatever vaccine is offered, as my recent cardiac episode has rendered me even more vulnerable than I was. (I thought it couldn't get any worse!) and that the Versus Arthritis website have lots of valuable information.

My husband will get his vaccination done at a local hub on Thursday, but my RA specialist told me yesterday that they are about to send out appointments to shielders in Scotland this coming week.

We will get through this!

Marydoll. Just returned from vaccination. It was the AstraZeneca. The accompanying leaflet says “no data are currently available in individuals with a weakened immune system, or who are taking chronic treatment that suppresses or prevents immune responses”. Rather a clunky sentence, but really nothing that we didn’t know already. Nurse giving the injection she specifically pointed this out.

NannaLyn, they started me off with Hydroxychloroquine but it made me very unwell. Hence they put me on Methotrexate. I've been on it for around 10 years. If I spot that advice on the website alters, I'll flag it up on this thread.

I had my vaccine yesterday afternoon - the Pfizer one unfortunately as the Oxford was recommended for me, but needs must. I'm not complaining. Naughty I know, but I've decided to miss my weekly Methotrexate dose for a couple of weeks to allow my immune system to build up to hopefully make the most of the vaccine. If I had an infection and was put on antibiotics, the advice is to stop Methotrexate, so hopefully it will be okay.

twinnytwin

Glad you had your vaccination. Strange, isn't it, I was recommended to have the Pfizer vaccine and was given the AZ one and you were recommended the opposite! Still, as I think we were both told, the vaccine that you can get etc.

I think I would do the same as you regarding the Methotrexate, especially as you only seem to have it once a week.

I'm lucky that I haven't had any adverse effects with the HCQ. My Rheumatologist referred me to the Retinal Clinic at the Eye hospital for 6 monthly check ups because of the HCQ but at the last clinic just before Christmas, the Retinal Consultant and her team ran loads of tests and scans on my eyes and have now said I don't need to see them for 2 years, unless I have any problems with my eyes.

Stay safe and thanks for all the info.

I was put on Hydroxychloriquine when it first came out and the regulations concerning it were very strict, as it was a new drug. However, over the years the onitoring requirements weren't as rigorous.
I was taken off it by my cardiologist two years ago, as not suitable for people with my heart problem.
As well as biologics, I take the highest dose of Sulfasalzine. People with lung problems usually can't have Methotrexate either.