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Anyone who has had the vaccine and immunosuppressed?

(81 Posts)
Marydoll Tue 19-Jan-21 15:13:08

I am deemed extremely clinically vulnerable, due to multiple comorbidities and also immunosuppressed, as a result of injecting biologics. I also have a number of severe allergies to medication into the bargain.
I wondered if anyone in this position has had the vaccine yet.
I am finding it difficult to get any advice from my clinicians, in fact I'm finding it difficult to get anyone to return my call at all!

Marydoll Wed 17-Feb-21 13:25:51

Glad to hear better news from you NannaLyn onward and upward. I'm on Day 7 and still taking anti nausea pills, but definitely improving. Thank goodness!

NannaLyn Wed 17-Feb-21 10:39:13

Firstly, Marydoll - I hope you are starting to recover from your nasty side effects of your vaccination. flowers.

I had more blood tests yesterday - they checked absolutely everything. I've just had my Haematologist on the phone and my neutrophils are now above 1.0 (whoopee!) and all my other blood counts were normal, so I can start my Maintenance Therapy on Friday. What a relief!

(She did think that my Covid vaccination might not have given me much protection because of the low neutrophils count but said any level of protection, however small, is better than none.)

To try to boost my neutrophils, I have been taking extra vitamin C and zinc and having a daily pot of Actimel before breakfast, as well as eating lots of walnuts and almonds. Don't know whether any of this helped.

Hope all of my fellow immunosuppressers (good word, Marydoll) have had their first jab 💉 and are not experiencing too many problems.

Take care and stay safe. 😷

NannaLyn Mon 15-Feb-21 18:41:43

I don't sleep very well. 4 hours is fairly common. Tried reading GN in the night but it keeps me awake even more and before you know it, an hour had passed and I still don't feel sleepy! As for not stressing......

I always fall asleep watching tv in the evening though.

BlueSky Mon 15-Feb-21 18:24:49

NannaLyn
“While side effects show your immune system is reacting to the virus, the absence of such signs doesn’t mean the jab has failed to work. Even with the second dose, only half the people in the UK study had a sore arm and one in five had a broader effect like fever.”
Thank you for this NannaLyn! I’ve been trying to find out whether this was the case or not. No reactions/side effects for me after the first Oxford AZ.

Marydoll Mon 15-Feb-21 18:16:52

I have no problem at all with your post and what you are saying, NanaLyn. A lot of it is common sense.
Unfortunately, for some of us, it's not very easy to fulfil. The spirit it is extremely willing, but the body is useless.

NannaLyn Mon 15-Feb-21 18:01:38

Marydoll

I'm so sorry that you have had such horrible reactions to your vaccination. Sending you flowers

To all of you who are immunosuppressed, I thought you might be interested in the following.

I have been looking through my husband's New Scientist over the weekend and this week's is called a Coronavirus Special and there are a couple of very interesting articles in this week's edition. (13 February 2021.)

The first is “How to give your vaccine a boost.”

(I cannot manage to supply a link because it requires you to log in to your account but I’ll quote parts and then paraphrase the main points.)

“Simple behaviour changes could improve how your body responds to a covid-19 vaccination and the speed at which you are protected from the coronavirus…
These factors could be so important that some scientists believe that ignoring them could reduce the overall success of the covid-19 vaccine roll out….
Although the majority (of people vaccinated) will build immunity over the following weeks, a small percentage of people won’t become immune at all.”

To improve your body’s response they suggest that:

You try not to stress, because stress impacts the immune system.

You need to sleep at least 6 (preferably 7) hours beforehand as people who had fewer hours sleep for several consecutive nights prior to some vaccinations had a lower antibody response.

If you live with others, a few extra hugs might not go amiss. Extra video catch-ups and talking to your family can help make you feel supported, reduce your stress and improve how you sleep at night.

Exercising for 45 minutes beforehand might give you a higher antibody response later.

Apparently women tend to have a higher antibody response to most vaccines than men and vaccine responses diminish in older people, whose antibodies also wane more rapidly after vaccination.

The makeup of your gut bacteria could play a role in one’s response. Prebiotics and probiotics might improve your response to the vaccination. (This has not been proven.)

The second article is “How to tell if your vaccine worked”

“To tackle the covid-19 pandemic, we need the most effective vaccines we can get. But even the best vaccines don’t work in everybody…. All the vaccines in use against coronavirus can cause side effects, including a sore arm, fever, chills, headache and nausea, usually in the first two days after a jab.”

“While side effects show your immune system is reacting to the virus, the absence of such signs doesn’t mean the jab has failed to work. Even with the second dose, only half the people in the UK study had a sore arm and one in five had a broader effect like fever.”

(There are actually five pages about coronavirus in the magazine.)

Although I had my AZ vaccination on 28 January, I haven't had any reactions to it. I know my immune system is compromised. As I said on an earlier post, my neutrophil levels are 0.74 (They should be about 2) I'm hoping that when I have my next blood test tomorrow they may have improved. I still don't know whether I can continue with my treatment if they are too low but I have another telephone consultation with my Haematologist on Wednesday morning. Still, I'll have my second vaccination when it's offered and hope for the best.

If any of you do not agree with what I have copied out, please note it is not my personal opinion, so please don't shoot the messenger!

Stay safe everyone. smile

Marydoll Mon 15-Feb-21 17:42:56

Just back from hospital and it appears that a few of the immunosuppressed on biologics have had similar reactions.

BlueSky Mon 15-Feb-21 12:17:19

Marydoll I would have thought the opposite, immunosuppressed people having less if no reaction? But it sounds good even if you don’t think so at the moment!

Marydoll Mon 15-Feb-21 12:08:18

I've been shielding too and you are correct, Karia, it's better than catching Covid.
However, after three days of vomiting, I did have second thoughts. wink My GP did say this morning that some immunosuppressed patients were having severe side effects.

Kari4 Mon 15-Feb-21 12:03:29

My daughter is immunosuppressed. She had the AstraZeneca jab just over a week ago. Her arm was painful with a red swollen lump for 6 days. Her doctor said that was her body developing antibodies. Preferable to getting Covid as she’s been shielding since March last year!

Marydoll Mon 15-Feb-21 11:55:55

Good morning all fellow immunosupressees! I just wondered how you were all faring after getting the vaccine.

I have had a severe reaction and five days later have had to contact my GP for help. It has been quite brutal, but I know it will be worth it in the long run.
I registered all the reactions on the Yellow Card site, in the hope that someone might take notice and it would inform further research.

It has made me a little wary of the next dose, to say the least. However, I AM NOT A WIMP and will meet it headlong.

NannaLyn Thu 11-Feb-21 09:55:53

Good morning Marydoll

Very glad that you have had your vaccination. Hope you had a good night with no ill effects. Pleased to hear you had the Oxford-AZ one as I had read that it was the best for people taking biologics. (I must admit I had no knowledge of biologics before reading this thread.)

Like you, I had 2 hospital appointments in 2 days. A trip out! It was lovely to see different faces and to talk to different people face to face.

I'm still thinking about my neutrophils. Might start a new post later in case anybody else has any bright ideas.

Take care and stay safe. smile

Yiayia4 Wed 10-Feb-21 20:16:21

Well done Marydoll

Marydoll Wed 10-Feb-21 18:44:48

Thanks folks. I am back and all is well, so far. However, I only had it an hour ago!
It was the Oxford one. Done nothing for a year and three medical appointments in two days! Exciting stuff.

NannaLyn Wed 10-Feb-21 17:41:14

Grandmajet

Yes, I've had the filgrastim injections after my last 2 or 3 chemo sessions. I thought they might give me some more to bring home yesterday but the nurse said that they are given to use after a cycle of treatment, not before.

One of my chemo nurses is Italian and she said that in Italy they advise you to eat mackerel. I tried this a couple of cycles ago but it didn't seem to make any difference. I read somewhere that walnuts helped so I now add a few to my breakfast each morning.

Callistemon

(Predictive text tried to change you to Valuation!)

Glad you received your vaccination without any adverse effects. I take a Sainsbury's A-Z multivitamin and mineral tablet each day. I checked with my GP first and she said it wouldn't do any harm.

I was wondering whether the Covid jab might have affected the levels but think it's more likely that the low neutrophils might make the vaccination less effective instead! (Perhaps that's why I didn't have any after effects at all - not even a sore arm.)

grandmajet Wed 10-Feb-21 17:01:06

NannaLyn, a couple of times I’ve been given filgrastim injections to administer at home between chemo treatments which boost my immune system.
Good luck with your vaccination this evening Marydoll.

Callistemon Wed 10-Feb-21 16:43:59

Anybody know how to increase neutrophils?
NannaLyn - I wish I knew! Apparently they increase if you are trying to fight off an infection, said He-Who-Knows last time I spoke to him, but I wouldn't recommend that.
I've taken Vit D, Vit C etc but it seems to make no difference. As they were 1.8 last time (a few weeks ago) He-Who-Knows said go ahead so I had the Pfizer vaccine at the weekend, have a sore arm and a bit of a headache but didn't feel particularly tired until today when I keep nodding off, but that could be a coincidence.
Still 🤞🤞 for you NannaLyn and others on the thread

Marydoll I hope you get on ok this evening, let us know how it goes.
😂 at your last paragraph!

NannaLyn Wed 10-Feb-21 16:29:47

Marydoll

That's the sort of thing that I do! grin

Good luck this evening - hope you get the vaccine that you want.
flowers shamrock

Yiayia4 Wed 10-Feb-21 15:17:55

I had the jab last week.I have Psoriatic arthritis a autoimmune disease.I had the Pfizer apart from a sore arm and slight headache I was fine.

Marydoll Wed 10-Feb-21 14:59:20

NannaLyn , I hope there is an improvemnet very soon.

At last I am going for mine tonight, fingers crossed, it's been an eventful week, healthwise!

This may make you smile. I saw this thread come up on the active list and wondered why I hadn't noticed it before.
Then I checked and saw that I had started it! grin. My brain is mush!!

NannaLyn Wed 10-Feb-21 14:53:43

Callistemon and Marydoll

I hope you have both had your vaccinations without any ill effects.

Was supposed to start my lymphoma Maintenance Therapy yesterday but my neutrophil levels were too low (0.74) and at my blood test of Monday they forgot to take a sample for my LFT.

After 3 attempts the nurse managed to get some blood but I have to go back for more blood tests next Tuesday followed by another phone call appointment with my Haematologist on Wednesday. If my neutrophils have increased, I might be able to start treatment next Friday.

Very disappointed as it's 12 weeks since my last chemo session so levels should have recovered. Just have 2 very bruised arms now!

Anybody know how to increase neutrophils?

Callistemon Tue 02-Feb-21 20:27:41

Thank you NannaLyn - I only just saw your post. I will be going at the weekend.

Marydoll Tue 02-Feb-21 20:26:24

Hejira, thanks for posting the link. There more info we have the better.

Hejira Tue 02-Feb-21 18:09:27

This is the latest release from Crohn's & Colitis UK dated 31 January 2021.

It's worth reading the whole thing even if you have a different auto immune condition or your immuno-suppression is caused by something else as there is some very helpful general information.

www.crohnsandcolitis.org.uk/news/latest-coronavirus-vaccine-for-people-with-crohns-or-colitis#preferred

NannaLyn Mon 01-Feb-21 00:26:34

Callistemon

If you look on sps.nhs.uk one of the sections is:

"Advising individuals with allergies on their suitability for Pfizer-BioNTech COVID-19 Vaccine"

(It also gives advice on the AZ vaccine too.)

When I had my vaccination, I wrongly assumed they would be using the Pfizer vaccine because that it what they gave my husband a few days before. We weren't told which vaccine it was until after we had had it!

When I enquired about allergies, they were only concerned if the allergy had caused the individual to suffer an anaphylactic shock.

Good luck - I hope you don't have a wasted journey. shamrock