Covid-19 vaccination experiences

@Ravn I do have a GP appointment later today to discuss if I need to stop fludrocortisone before having the vaccine, but I have no confidence that they’d know anything about ME specific reactions to particular vaccines. It’s emotionally challenging to not have access to medical advice I trust over such a serious issue.

 

Difficult, isn't it.

I was a bit undecided early on, back when the vaccine still looked to prevent spread as well as serious infection. I rarely leave the house and I have a "wall of vaccination" around me so at that time the risk-benefit calculation wasn't clear. That changed with the delta variant. Putting my husband into quarantine after every time he left the house - daily - didn't seem all that practical in the long run.

I had no idea what to expect from the vaccine. The only other adult vaccine I've ever had was a tetanus one more than 30 years ago during a particularly mild ME period and that went fine. On the other hand my (now severe) ME started, and relapsed, after viral infections and my PEM symptoms in particular are very flu-like, plus I get flu-like symptoms with every coldsore reactivation, so my immune system does seem to be a tad touchy. Which made me nervous about the vaccine but even more nervous about catching the virus.

I made sure I was well rested and in the best possible condition before going for my shots. If that made any difference I've no idea but I had no problems with either Pfizer shot, in fact quite the opposite, I got a little boost from them.

I know others haven't been so lucky; crossing my fingers all goes well for you.

 

I had Pfizer yesterday afternoon so this is my initial feedback:

positives: it hasn’t caused an immediate ME flare, my viral/inflammation symptoms are better than average (my interpretation is my immune system is otherwise occupied and doesn’t have the resources for general autoimmune mischief). The staff were lovely, took time to check for interactions with medications I take, they let me have the injection lying down and were able to adjust their standard spiel to the situation that I might respond differently (I’d been upset by the GP appointment so this was in contrast).

Negatives: My body’s initial response was to start going into a paralysis episode when I tried to get up, so somewhat amusing trying to persuade them I was well enough to leave the hospital! Some of you might remember that I get paralysis episodes anyway and since covid I’ve been getting more obviously Orthostatic triggered ones that come on quickly (this was the first while on mestinon though). I feel wiped out like I did with long covid fatigue, to me this feels qualitatively different to my experience of ME. It’s not unpleasant, you just have to accept you can’t do anything. So I’ve mostly slept since getting home. My arm is sore but that’s not a major thing. I’m intending to stay in bed today.

It hasn’t been long enough to know if I’ll get PEM just from the activity of going there (usually that kicks in 24-48hrs for me) which is an added complication for us interpreting vaccine side effects. In summary though it’s flared the type of response I had to covid (except chest/coughing) rather than a typical ME flare, which does make some sense.

 

I'm now at the 6 month mark post the AZ vaccine. Just had the one shot. The head pain (with sound and noise intolerance) continues and is not controlled by migraine meds (so far. it's trial and error and more side effects on top of the initial problem).

I am much weaker and with a lower ceiling of PEM and a much longer recovery time. Plus more.

This has seriously impacted my already low quality of life and robbed me of more of the simple pleasures I could experience before.

There has been no interest in this with the ME charities, AZ, the Yellow card system. Some people are getting replies or been asked for their GP's address to get more info. Nothing apart from that I can see. Some people have been phoning to ask them to look into PWME and adverse reactions but only lip service I can see so far.

A couple of USA reports (I am trying to avoid the anti-vaxxer websites as much as I can) show that women with neurological side effects are being told in some cases that this is psycho-somatic or being dx'ed with FND.

At least that hasn't happened to me as yet.

 

I am very sorry to hear this and hope things improve for you.

 

Sorry to hear that you haven't yet recovered from the vaccine, @ukxmrv . I'm five months post first vaccine and two and a half months post second vaccine and I'm still not showing any signs of improvement either. My ME has always been mild/moderate, whereas now it is moderate, bordering on severe. The PEM is really bad now. In the past it would take several days of activity to set of my PEM, whereas now, just standing and cooking dinner is enough for PEM to be really bad the next day. In the 30 years that I've had ME this has never been an issue before.

Don't give up hope, though. I've heard of several people recovering after six months.

 

I'm not giving up hope. I know how it works with recovering.

After surviving a serious road traffic accident, moving home several times, cancer (with all the chemo which knocked me for years) and all the normal things that can happen in life I'm just pissed off that yet again it's another year out of my life that I will never get back again - spent with extra side effects on top of my ordinary ME.

 

I totally understand that. I've spent the past four years almost with one thing after another. I finally thought things were starting to get back to 'normal' when the vaccine took me down.

 

im reporting some limited info from close people here in germany:

A) female relative getting a rash around the eye in the vaccine-center (1st dose pfizer)

B) female friend from school, same age 56, working in public transport
1st pfizer jab: anyway high blood pressure now sky rocketing, she feels its an emergency. gets doubled dose meds prescribed.
2nd pfizer jab: after 6-7 days, the retina ruptures, she gets lasered. couple of weeks later, she has swollen lymph nodes, ear infection both ears, fever.

perhaps in both cases a herpes zoster reactivation?

 

I'm eight and a half months post v1 AZ and five and a half post v2. Most of my symptoms after v1 went at about the 11 week mark just in time for v2.

The most frightening symptom was the recurrent throat angioedema which meant I had to take antihistamines fast and sit with epipens in hand wondering if it would settle without A and E which it did. I can't now drink alcohol at all without triggering throat angioedema. Mast cell reactions are much worse overall.
Orthostatic intolerance with breathlessness is somewhat worse so I can't walk as many steps.
I still have a small pink patch of reddened skin on my face which was left after the initial flushing.
Joint pain is much more severe, not relieved by prescribed painkillers. I was diagnosed with h(EDS) two years ago but it's only recently that the pain has become severe.
(Whisper) Pem may be slightly better.

After all this, it was tough to find I hadn't made many antibodies nor had a definitive T cell response. This meant I would need a top up before the booster. Since I am in my 'golden years' (huh), I am currently back to almost shielding.



My issue now is v3, not a booster, but the 3rd primary level top up. There is a lot of confusion around this ( I have written to my CCG twice and NHS England to no avail) but I may finally have an appointment in a few days time to have Pf in a hospital setting because of a previous anaphylaxis. I 'll post later if it works and I get the jab. At least I intend to try and post- am finding writing very tiring for some reason, probably because I am exhausted overall after all of this and a number of hospital appointments, as well as the anxiety attached.

Best wishes to anyone else having a third v, and to all who have boosters.

 

Really sorry to hear all this, @Binkie4. Hope things improve soon.

 

@Binkie4 Sorry to hear that you also had such a bad time with the vaccines. I'm five and a half months post first vaccine, and three months post second vaccine and I'm still struggling to get through each day. The ME exhaustion is really bad at the moment and I find it hard doing much of anything. I've had ME for 30 years and I was always mild/moderate whereas now I'm moderate/severe. At times I find it hard walking, not because of the exhaustion, but because I really have to concentrate of moving each leg. I go to take a step and my leg will hesitate for a second so walking feels very awkward at times.

I'm actually considering trying Benadryl for a few days to see if it helps with the symptoms at all. Apparently Dr. Klimas recommends people with ME take this before and after having the vaccine.

I don't know if I will do another vaccine. It definitely won't be until I've recovered from these first two shots. I think it was a mistake on my part getting the second shot when I hadn't recovered from the first one yet. At the time I just wanted it over and done with.

Hope that you fully recover soon, Binkie.

 

Thank you @TigerLilea. I am very sorry you are so badly affected. Five and a half months is a long time to be so ill.

I had improved enough by 3 months to have the second. By then the nausea was gone, tinnitus gone, weakness improved although other symptoms still remaining. I had no severe symptoms after v2 and was back at new baseline within 2 weeks.

The worst thing was to find out I had gone through that for so little protection. I have to shield again etc and miss my family. It has also been extremely frustrating to find the top up advertised but no one seeming to know how to get it or getting it mixed up with the booster. Totally frustrating and stressful.

But I'm making progress and currently hope to get a Pf dose but I am extremely nervous. I hope I can go through with it- I just can't stand being so isolated from those who are important to me any longer. I have talked to my immunologist who advises I take it and am taking Dr Klimas type supplements in the hope that they help.

Good luck in making your decision about another v. It is a hard one. I know I have so little protection so it seems the better thing to do because I am fearful of covid. Fingers crossed I can go ahead.

eta: and thank you @MeSci

 

Have any of you had your covid booster jab yet?

 

So far they aren't doing boosters here in BC to the general public, however, immunocompromised people are getting a 3rd vaccine. I keep getting reminders to book my appointment for the 3rd vaccine but I'm not doing it. At least not until I recover from vaccines #1 and #2. They have now decided to give seniors a 3rd vaccine as they are starting to get really ill again from covid, and a senior's home close to me just had 10 residents die in the last week. And this is with having had two vaccines already.

 

Does anyone have concerns re having booster and flu jab together.
Potentially a big hit on immune system .

My stepmum has RA and colon cancer ( no chemo offered) and is to have both at the same time ( UK standard rollout for over 50s)

 

I personally wouldn't want to have them both on the same day. Perhaps i'm wrong but the 'one in each arm' scenario, seems to me be to be driven by convenience for those administering it rather than what's best for patients. Not suggesting they would do something that's harmful, but we cant be sure what the effect of giving the pfizer/moderna jabs at the same time as flu, is, because they are new types of vaccine. (my booster will be pfizer as i had az the first time)

I remember when i was 22 & going to south america for work, i had several jabs all on the same day & dont remember any ill effects at all, but i was fit & well then.

When i went to the surgery to get some stiches out 3wks ago they wanted to give me the flu jab there & then, but i refused (couldnt cope with a surgical wound plus jab side effects on top of ME all at same time) I booked mine & had it at Boots last thrusday (you can book an appointment online). I asked about covid booster & when i'd be 'called' forit (im over 50) & they said they were doing walk in booster jabs for those eligible (ie anyone over 50 who is at least 6mnths post second dose) & that i should just book/walk in as soon as i was ready for my booster.

So for your step mom none of it has to be done at the surgery, where i think expediency is the thing. She could just do them seperately at a pharmacy if she wants.

 

Hi all,

The day before my first vaccine az1 I was in clear remission in so many ways after some successful experiences with a protocol I am still on and was on then. It was night and day really. I went from feeling ...yes feeling healthy and feeling normal I mean emotionally and mentally without PEM or much else. To relapsing back into a worsened level of function which it took me about 2 months to pull out of.

Az2 was worse really as the immune system weakened quite considerably after that one. I ended up ill with some weird bacterial microbial bug that didn't shift for about 6 to 8 weeks. It felt like immune supression i guess. I keep getting periods where I'm convinced I have a bacterial or microbial bug because it goes on for a few weeks usually with urinary tract inflamation. But only ever occurs after a god damn vaccine!!

So that was my experience with the az vaccines. I'm really quite relieved that we don't have to get anymore az vaccines because if Cort Johnson's poll is anything to go by the effects of them were much worse.

Also moderna have just requested fast tracking for their half dose vaccine 25uq or something like that. Which I think everyone here would benefit from. I'm praying that this comes out way in the UK and we can access these low dose covid vaccines. I really don't think my body can take a 4th 5th and 6th booster. Nevermind a third!

My quandary now is the problem of getting a third too soon after my flu jab. Which has also caused perm lower level of function currently (but not severely). I'd really love to know why this happens to me because it's not the ingredients in the jab - I'm fine for 6 to 10 days. But the long term immune response that seems to mess me up.

As an aside the flu vaccine has reactivated my dust mite allergy. Which is really bad currently and very annoying. In fact my skin is just itchy lately. Heating isn't really on so can't be that.

Whilst it's nice to be in a relapse remitting state. I fear my body won't take sustained hits like this and I hate how much of this disease and it's meant subsets are a total enigma! In terms of concise diagnosis via diagnostics.