UKC

Are there any long-Covid sufferers on here who have had both the Covid & Flu vaccines at the same time? How were the side effects? My wife has had Long Covid since June 2020 and is booked in for both vaccines on Monday. She's now worrying about the consequences! There is no reliable information on the long-Covid blogs and forums she follows so I was hoping UKC would come up trumps...

Its different for everyone, I have long covid and had both jabs about a month ago, zero side effects. The Mrs doesn't have long covid and had her jabs at the same time and was quite ill for 3 days but she is always ill from the flu jab, nowhere near as ill as the time she got the flu though. 

Don't I know it - my better half's long-Covid symptoms improved after her 1st & 3rd Covid vaccinations and got worse after her 2nd. Everything returned to her normal level of awfulness after a week or two. I've only had a tender arm for a couple of days.

Thanks for taking the trouble to respond!

Here's my personal experience. In early March 2021 I had my first covid jab (AZ). I was working in retail with possibly quite a high probability of contracting covid. That winter (20/21) I'd only experienced the 'usual' winter symptoms that plague most people (occasional sniffle, sneeze etc) but none of the classic symptoms of covid given at the time. Two days after the jab I was noticeably fatigued so that I had to cut short a walk after just a few miles. I put it down to a normal reaction to any vaccination and hoped that it would wear off in a short time. It didn't. The fatigue has stayed with me ever since. I have relatively mild symptoms of long covid compared to some others but I can't do anything like I could in the past. I've heard that the vaccine can't give you covid. If that is so, then two other possibilities exist as far as I can tell - one, the vaccine caused my long covid fatigue and brain fog or two, I unknowingly had covid in the run-up to the first vaccine.

The two subsequent boosters didn't noticeably affect me in terms of my symptoms. I carried on working but reduced my hours. Earlier this year I stopped working and tried to increase my outdoor activities. I have had some limited success but definitely nowhere near anything I could have managed pre-covid times. Once, I would cheerfully have marched up any mountain you'd point me at, now I have to consider routes and objectives very carefully and limit myself.

I had the flu and fourth covid booster in mid-October separated by a couple of days. Since then, I feel like I've been taken back to how I felt right at the start of my fatigue experience. This made me realise that I must have had some limited improvement during the 18 months. I'm hoping that time will improve things and that some treatments for long covid will become available. The amount of help given to me by the NHS has basically amounted to a few tests (blood and x-ray to check for other causes) and one zoom session with a physiotherapist who basically told me that what I was already doing (don't overdo it, get enough sleep, eat sensibly etc).

Would I get the two flu/covid jabs? Probably yes, since the consequences of catching either or both together could be pretty serious. It's like a rock and a hard place situation.

Its interesting what you say about being knocked back after the 4th booster in October. My breathing problems that the doc has put down to long covid has been particularly bad for the last month. I just checked and my booster was on the 8th of October.

Could be anything but you have to wonder if there is a correlation. 

I've got LC and had no side effects from the flu jab. The first and third covid jabs were both quite unpleasant.

If the option had been given to me I'd have happy had both jabs together. It wasn't, so I didn't.

Yes. It's unwise to jump to 'obvious' conclusions but, after my recent experience with the flu/booster it's hard not to. I'm thinking I might get in touch with my GP again (if only to remind them that I still exist). 

My wife has been very persistent in trying to get help / treatment from her GP. She has had no luck in being taken seriously - her GP told her she had the wrong "attitude" when she kept trying to get help. In Lancashire the long-Covid clinics are led by occupational therapists who deliver their "pacing" schtick then want to sign-off patients as not their problem anymore. There is no hope of a cure - she is effectively an invalid but can't get a blue badge as long-Covid doesn't qualify. She can't walk more than a few hundred yards on the flat - uphill is a no-no. This is someone who exercised for at least a couple of hours every day, went to the gym 3-4 times a week before Covid.

Pretty much my experience. I received a 'letter' months after my one zoom session. It seemed to be a computer-generated piece of nonsense cobbled together from responses I gave to questions asked during my session ('How do you rate your fatigue on a scale 1 to 5 ... ?' etc). As soon as I read it I knew I was being fobbed off and being taken off the list as 'cured'.

That's really sad to read. By comparison there's not much wrong with me. My own approach has always been to try and maintain a positive mindset and do what I can. I've decided that long covid is like an early introduction to getting old. Just a bit earlier than I thought.

Sorry to hear this and sounds very similar to our experience. My partner has LC (potentially pots disease) her 02 drops by 9% just from simply going from a lying down position to sitting up! Local GP didn’t take it seriously but (in Scotland) there’s only one specialist who has got us hospital appointments, scans etc. 

so from our experience I’d suggest a few things, low histamine diet has been useful/beneficial, anti histamines, various supplements, get a second opinion (GP) but also look at private practice specialists, LC specific podcasts, vet a few LC fb groups but if you find one that’s trustworthy that can be useful for a support network etc. to give to a glimmer of light my partner has gone from either crawling to the bathroom or using a porta potti in the bedroom and severely depressed/little to no sleep to now making good progress, 5-6hrs sleep, walking unaided, able to converse and less light/sound sensitive.

The scariest thing is/was the no data/not knowing if/when recovery would start and at what pace. I’ll try and get some more info to you if you think it’ll help. 

best of luck 

Sorry to be the bearer of bad news, but I had my covid booster yesterday and was up all night with a raging temperature. However when shivering at 2am I reminded myself that this is how I felt with covid and it's worth suffering a few vaccine side effects if it avoids me catching it again. Hubby had his at the same time and has just a headache and sore arm. 

It looks like I've got my vaccine thanks to the long covid clinic, as I'm not in an elligable group but got an email inviting me to book. As others have said support from the long covid clinic has been disappointing, so good to finally get something out of them.

Given the range of side-effects suffered by many, why have a covid jab?

Because the side effects are nothing compared to how ill I felt with an active covid infection.

I had mine on Thursday and felt fine by Saturday. Just a little tired and washed out afterwards. So clearly a very variable experience.

You can get a blue badge with long covid if your walking ability is sufficiently limited that you meet the criteria (I think less than 200m). Although probably she is in the same position as me in that she is too ill to live a normal life, but not ill enough to count as disabled.

I'd recommend your wife looks into the nuffield health long covid recovery program, it's free and very much focused on functional mobility rather than exercise - I'm week four and so far it's going well. They are not pushing us to overdo it and a lot of the exercises are seated, so not too fatiguing.

It sounds like your partner is taking a similar approach to my wife - she has to be on a low histamine diet and is also now gluten free. My wife has serious post-exertion malaise (PEM) which is being helped by a vagus nerve stimulator. We had lunch at our daughters today and the 3 grandkids were full-on. Normally my wife would have had a PEM crash after this experience but she used the stimulator when we got home - did a lot of yawning - and feels better. This is something she picked up from one of the LC blogs.

Interrupted sleep is a big problem, my wife hasn't had a whole night's sleep since she had Covid in 2020. She has dimmed lights and no screen time for a couple of hours before bed and relaxation music, breathing exercises and CBD oil when she gets into bed. This helps her get to sleep, but she usually only gets a maximum of 4 hrs before she is awake again. If she has a couple of nights with no sleep she takes sleeping tablets prescribed by her GP.

Selected LC FB groups & blogs have been very useful. Interestingly, the LC Support Group FB group refused to post her question about having flu & covid vaccines together - which prompted me to post on here!

I do hope your partner continues to make progress!

I'm booked in for both jabs tomorrow evening (same time as my wife) and am booked in for a session at the climbing wall on Tuesday morning... It could be more embarrassing than usual!

I had Covid just after my wife in 2020 - it was awful - I was hallucinating! I got it again in August this year - I was ill for a week!

Based on your recommendation my wife has looked up the nuffield program - looks really interesting! Thank you!

Thanks to everyone who has taken the time to respond to my original question and have shared their experiences of long-Covid.

24 hrs post vaccine temperature stabilised and 48hrs post vaccine and I'm pretty much back to normal. Very achy, but headache has gone and I feel able to do things with the day 

As I said before, 48hrs of post vaccine symptoms is a price in happy to pay to reduce the chance of catching covid again.

Reckon symptoms were more dramatic but sorter lasting than with my Pfizer booster.

I had the flu and COVID (4th) vaccines at the same visit, both in my left arm in late Sep. No major issues other than feeling a little shivery that same evening.

If anyone is having trouble accessing services via their GP - which is very patchy - then this document might help outline what they can/should offer:

https://www.bmj.com/content/378/bmj-2022-072117

If any long covid sufferers are in the Sheffield or Derby area the universities are currently recruiting volunteers for an observational research programme. 

16 weeks, with fortnightly check-ins to monitor changes in our symptoms over the period. Just done my first one and lots of questions on health, tests on lung function and some light activity (walking). 

Message me direct and I can send more info by email.

I had think I had covid back March 2020, it lingered and probably turned into long covid. Ended up getting diagnosed as fibromyalgia as I'd suffered some of the symptoms on and off for years, but was in a sustained period of remission with a full and active life. COVID certainly supercharged whatever was going on and led to period (6 months) where I couldn't do much at all.

I don't qualify for a 4th jab and just caught COVID again (bounced back after a fortnight). I should probably consider paying for a flu jab but a little concerned that it will bring on a fibro flare for another fortnight, month, whatever..

NHS is rubbish at treating stuff like this but at least with a diagnosis of some kind you've got something for your employer, family and friends when you fail to show up yet again. My last run in with the pain clinic was a series of webinars going over 101 of health & wellbeing, patronising quite frankly

I had covid back in April and thought I'd recovered. Suddenly in mid Sept, I got hit by crippling fatigue and was off work and in bed for 4 weeks. Found out about the Mast cell activation aspect of long covid and linked feeling awful to stopping my antihistamines for hay-fever in Sept! Started taking them again and feeling better after a month. Back to work this week and managing 2/3 days. Haven't dared go to the gym yet but hopefully next week. So.. antihistamines definitely worth a go! Cheap and low side effect. Gp didn't want to know though, just referred me to the common sense clinic..

Interesting - the timing corresponds with my wife being contacted by one of our GP practice's pharmacists!

Had a booster a year ago simultaneously with flu jab, zero side effects. Had the latest booster six weeks ago, the new one that’s said to be configured for the most recent Covid variant; also with flu jab. Zero side effects.

However I hear about people being quite unwell in a flu-ey, virussy way for a couple of days, unable to do anything much. 

Lots of claims of anti antihistamines and low histamine diets being beneficial to LC sufferers. However my LC clinic does not recommend them and given that personally I found that my hayfever allergies have been far milder since covid I am sceptical.

Youre right to be sceptical, theres no evidence! I'm not claiming to be a randomised clinical trial, but as an n=1 case report, they work for me. Stopping them again as a test was like stepping back into the fire.  Also, there's a plausible mechanism through h1 inhi ition of peripheral mast cells. Easy enough to try and with minimal risks (OTC med). There are plenty of RCTs showing h1 second gen antihistamines are safe in long term use. Otherwise I wouldn't have posted.

As I say a lot of sufferers are reporting similar to yourself and if it helps that's brilliant as they are cheap and usually safe to use long term.

For the last month or so my LC has really kicked up a gear to where I'm struggling to do my job. I didn't realise until it was mentioned on here but my decline corresponds with me stopping the a it hystermines. Might be a coincidence, who knows.

I started taking them again yesterday so it will be interesting to see what happens. 

My wife has been histamine intolerant since she had Covid - can't eat mushrooms, tomatoes, red meat, mature cheese, strawberries, alcohol... it's a long list! She takes over-the-counter histamines daily and DAO tablets if she is eating out and can't be certain of the ingredients.

I haven't had long covid but I did have covid back in March and was just a bit iffy for a few days. Prior to that I'd had the two initial covid vaccinations plus the booster, with no effects except a sore arm. I also had a flu vaccination last autumn, again with no significant effects.

This year I had the covid booster and flu vaccinations together about ten days ago and felt pretty lousy for about 36 hours: headache and achey limbs mostly, and I slept quite a lot. I suspect this was a consequence of having both at the same time, and I'd probably avoid that in the future by leaving a week between doses. But that's just a personal decision, and I absolutely will continue to be vaccinated for both conditions in the future.

Just a data point, obviously.

I thought I would revisit this thread with an update. I got back on my antihistamines on Sunday and what a difference.

I can breath again and I have energy again, still have long covid and run out of steam very fast but I now have steam again to run out of so as long as I'm careful I can make that steam last all day. 

I have had long Covid since April this year with sore weak muscles.

Eventually the weakness and pain subsided at the start of October.

Then I had the Covid and Flu vaccines on the same day at the start of November and my muscle pain returned within days.

This may be a coincidence but for the pain/weakness to rerun within days has me thinking there is a link.

Edit

All four Covid vaccines Pfizer

Just ploughed through this discussion and anti histamine is mentioned a few times.

Do these over the counter meds have a positive effect on the symptoms of LC?

Your experience has similarities to mine. No pain but fatigue. I only realised that I'd had some recovery when the fourth booster seemed to knock me back to square one. I'm wondering about antihistamines too. Never needed them in the past.

Just reading this BHF site and the comments on antihistamine. I shall be speaking to my Pharmacist and GP about this. However I shall break out my over-the-counter antihistamine meds and see what happens.

https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/coron...

Third jab reactivated a lot of my initial covid symptoms, but they did ease back to pre-vaccination long covid levels after a couple of weeks. 

Feels similar with forth jab, although so far it looks like a bigger reaction and quicker recovery.

Lack of scientific evidence (as with pretty much everything long covid related), but enough anecdotal reports within the community that it might be worth giving them a go. I have seen a small number of people say they felt worse, but an appreciably larger number say it made a significant improvement.

The long covid clinic and my doctor however both say no to trying them, as it's unproven and therefore not recommended by the NHS.

It took three months for my doctor to even consider the idea of Long Covid and that is only because I kept bringing the subject up once a month.

Must admit mine was very good with diagnosis and refering to a long covid clinic - but then didn't want to know me.

Long covid is only diagnosed 12 weeks (three long months) after the initial infection, so for the first few months it is just slow recovery. By the time in the pandemic you had it I'd have hoped that doctors were on the ball with regards awareness and diagnosis, even if they still don't have a clue how to treat.

Well we’re talking about clinics which give long covid patients mental health care and a little bit of physio (very little). So whatever guys, come back when you can actually do something rather than work for a joke outfit.  
 

Fwiw I’ve found loratadine a bit useless but Benadryl very good for improving sleep and calming my nervous system. Cheap and OTC.

My let's call it a flare up of long covid has been getting gradually worse for a couple of months. Probably for a month before jab 4 {phizer, 1st 2 were zenika and 1st booster modernna) then got really bad a couple of weeks after jab 4.

I just put it down to overwork and maybe a bug but this thread got me thinking about time linesh when someone mentioned antihistamines and I definitely stopped taking them around the time of the start of the decline. 

4 days back on them, massive improvement. Not GP prescribed, just a year's worth from Amazon for a couple of quid. 

I only have a few hours of tests. This morning sore aching muscles. Took the dog to the park, still with aching muscles and read this discussion while sat on a bench.

I went home and popped an antihistamine and gradually noticed that my aching muscle discomfort subsided.

I still have a night shift ahead of me so we'll see how I get on. It may be coincidence with wanting something positive to happen and me taking an over the counter med but I feel a bit more confident about doing my first night shift in many many months.

Hope the night shift went okay. 

I shall be taking at least a few more antihistamine tablets as the results have been like night and day. This was the only change I made to my daily meds routine.

Im one happy camper.

👍👍

Interesting posts about anti-histamine. Has anyone tried Chinese medecine, seems to get good results for immune system issues? Lions mane powder - increase your Qi  

Good observational study here that confirms the experience of my wife and other long-Covid sufferers - https://jim.bmj.com/content/70/1/61

You go first...

My wife takes cetirizine - cheap generic over the counter packs of 30

So we both had both Covid & Flu vaccines on Monday evening.

My wife - the LC sufferer - has had no ill effects at all so far!

Me - apparently healthy - mega sore arm the next morning (both jabs same arm) - felt fluey in the afternoon - OK on Wednesday

No negative comment intended with respect to anti-histamine. I've no experience with Chinese medicine, but have friends who've reported good results with it for issues that Western medicine struggles with - for example eczema. I kinda share your attitude but would give it a go if circumstances dictated.

Husband has just returned from New York with strong 'flu symptoms, neg on LFT (symptoms began on Thursday). As he's most likely got 'flu now,  is it still worth him having the annual 'flu vaccine this year, once recovered?

Would you mind telling me a bit more please? Which antihistamine have you been taking? Do they make you drowsy? What time of day do you take them?

I've been suffering with muscular pain/discomfort since about April. Its not earth shatteringly painful. Just imagine doing a really long day's walk that you are used to and remember that warm ache in your large leg muscles including your BUTTocks.

Now imagine that ache and pain when you wake up, or go up and down the stairs a couple of times, walk to the shops or drive your car for half an hour. And then that ache gets painful the more you stay on your feet doing simple stuff like that and all you can do is rest for days or even weeks till it settles down.

That's what I've had for about six months. This all happened after I got Covid in February and it took many months before my GP accepted that this was a form of Long Covid.

Around the beginning of October things had settled down that I thought I was over this problem. And then I had my Covid Vaccine at the start of November. A couple of days later I felt like I was back to square one with the pain/discomfort in the same areas.

About a week ago, I found this very discussion and somebody mentioned antihistamines. At first I thought, what a load of codswallop. And then I thought "what do I have to lose" taking a simple over the counter hay-fever tablet.

I was very careful in how I went about this experiment. Last week I went back to work and for two days I just observed how I got on, and how much discomfort I was in simply sitting at a desk reading emails and catching up on stuff. On the third day, when I was back on the road working and half way through my shift, I took only one antihistamine and simple pain relief. It was Piriton. After less than an hour the pain subsided quite considerably in my muscles. The change was quite impressive.

I kept up with taking one Piriton a day. Yesterday I spoke to my local Pharmacist about other forms of antihistamine, She had never heard of Long Covid and the effects of antihistamines but she was open to my personal account and said that I would not be causing any harm to myself taking them.

The Pharmacist said that Piriton was just a brand name for Chlorpheniramine which should be taken 3 times a day and it was the Hinze 57 variety of antihistamine. She mentioned that there were newer products on the market which lasted 24 hours so why not experiment with them and see which works best for me.

Loratidine (?) and Cetirizine (?)

I am a test subject of one, and neither my Pharmacist or GP have heard of such effects on Long Covid and muscle pain/weakness but its having a big impact on me.

I will NOT be having any more Covid Vaccines.

Thanks Lemming.

You are most welcome. I hope it was useful.