Does Covid help the autoimmunes?

[WendyWoo50]

I finally succumbed to Covid. I was unwell, exhausted and prepared. It hasn’t been too bad. But a very strange thing occurred.

You May remember in Feb we had a terrible house fire and are in a temporary rented house that is totally unsuitable for my mobility needs.

My son even set up a camping loo in the cupboard under the stairs as I struggled so much on the stairs and we obtained a commode for my bedroom as I struggled with the 4 steps to the bathroom from there in the night.

Almost as soon as the Covid symptoms started a strange thing occurred. I could walk. I could walk down stairs, even run up and down. I was able to walk too, with no stick. I visited my sons farm (we all had covid st the same time) and had a lovely walk. I’ve been on top of the world. Enjoying every pain free covid moment.

Sadly… Today I noticed my hips hurting again. I just had my second negative LFT but I am aware of the pain and stiffness in the muscles in my legs coming back too. So much so I had to get up early as I couldn’t lay any more.

This has been a welcome break. Amazing. It reminded myself and my family who I really am. I had prayed so hard that Covid had cited me and was so positive!

Has anyone else had this strange phenomenon?

I have APS, Sjogrens, Lupus, Fibromyalgia 💋 x

[lupus-support1 Administrator]

Strange things can happen to our bodies for inexplicable medical reasons.

But no, covid isn’t good for autoimmune diseases. It can be fatal!

Happy you have fully recovered.

There is now treatment for those like me who have zero autoantibodies, despite 4 covid injections, but will inject me with covid antibodies.

With good wishes,

Ros

[WendyWoo50 in reply to lupus-support1]

Yes very strange. I have hidden away for all this time and when I finally got it it cured all my pains. Obvious I’m vaccinated.It was as though my immune system left my muscles etc alone and fought the covid.

Now that fight is over it has reverted back to attack the muscles etc

I followed the covid plan I had with my consultant: stop immunosuppressive drugs and double the steroids. As I still have a chest infection I’m still following that regime so that’s not the cause of sudden return of pain. X

[lupus-support1 Administrator in reply to WendyWoo50]

Be well & look after yourself!

[HollyHeski Administrator in reply to WendyWoo50]

Sounds strange but interesting you got a break from pain - if only .....Keep well Wendy xx

[Ray46 in reply to WendyWoo50]

If you've had a medication change as well as the virus then both should be looked at as possible triggers. Effects of meds changes can be almost instant, or not, they can outlast the change or revert to previous before meds are changed back.

At one stage I was struggling to do stairs at all then one morning I suddenly found I could run up two at a time. I had no idea why until afternoon meds time when I found I had forgotten all the morning meds. Obviously I caught up the meds, but walking took a while to deteriorate back to where it was. I think it took a couple of months of patient trial-and-error detective work (in conjunction with doctors) to work out which of the drugs was responsible - but that is what it turned out to be (swapped for another drug in the same class and solved problem).

[KellyInTexas Administrator in reply to lupus-support1]

Ros, I had the Evusheld injections last week.

( strangest thing- two nurses each give one shot in upper hip simultaneously!)

[lupus-support1 Administrator in reply to KellyInTexas]

It looks like I will have to have this said my rheumatologist as it gives the autoantibodies.We are debating whether to have the Rituximab before or after we go to the UK in August.

OTOH, I needed it 6 months ago but my rheumatologist felt it was too risky; or after I come back. When I see my haematologist, we will decide. I think it will be after because of the risk of getting covid!

We have friends who went away to Cyprus & returned with covid!

[Dot69]

I did that so interesting Wendy I hope you’re doing better nowI have had my 4 Covid jabs now which can only be Pfizer has anyone else been given this for there’s ?

[KellyInTexas Administrator in reply to Dot69]

Yes- had fourth in Feb, and just had Evusheld this past week. ( those who are severely immune compromised)

[LindaMorrell in reply to Dot69]

yes

[GinaD]

Very strange indeed! I would hope that doctors could explore your bloods and... Just think! ... find a biochemical that could be activated or negated to control autoimmunity!? Sorry the pain is returning. And I hope that it never returns with as much bite as it had before!

[WendyWoo50 in reply to GinaD]

I know exciting. I’m writing to my GP, consultant, Prof D’Cruz and Prof. Hughes. You never know. Research has to come from something x

[KellyInTexas Administrator in reply to WendyWoo50]

Truly would be a miracle ! Thank you for doing that Wendy.

I’m very intrigued.

My hunch is you may have dumped some massive (?cortisol ) levels to cope. “Fight or flight.”

Maybe because you are hyper immune responsive your body “over responded” by balancing things correctly for once!

I know if I didn’t miscarry ( which was seemingly constant- we worked out that I was almost always either pregnant, trying to get pregnant, or recovering from miscarriage, or nursing from age 23-33. )

or lodge a baby in a Fallopian tube… I felt fantastic during pregnancy !

My husband always commented that I was never healthier than when I was successfully pregnant, and he was right.

[MaryF Administrator in reply to WendyWoo50]

Well done, glad you noticed the various changes, positive/negative etc MaryF

[Jess237]

Glad you had a break. I’ve experienced that as well when on steroids. I expect the extra steroids cut inflammation and gave you more energy. Have you talked to your doctor about what happened?

[WendyWoo50 in reply to Jess237]

I’m writing to those who care for me. The difference occurred as soon as I was I’ll with Covid. And stopped as soon as covid went. I’m still on the higher dose of steroids. So in this case it’s not linked to steroids.

[GinaD]

A friend calls these "god- incidenses," but look at what showed up in my usually political news feed today, scitechdaily.com/scientists...

[StriatedCaracara]

Maybe some pathway got switched.

Amazing story Wendy. Make sure you share with the medics as widely as you can. Maybe write something like you have done here - going into as much depth as possible on how symptoms changed.

Did you have bloods done around that time?

Find the ones that are closest before and after.

I found when I had covid March 2020 that my Full Blood Count profile was affected. I think there are typical changes...you could see how you compared with others in how FBC changed.

Look at complement, the works.

I think covid affects goblet cells and mucin production..with me airways, gut and eyes were really dry after covid. I think this was because goblet cells had been damaged...

Maybe there needs to be a balance and your body found that...

Amazing - thanks for sharing, please continue to tell people...

[WendyWoo50 in reply to StriatedCaracara]

Thank u. I fully intend to shout about it. As I said earlier research needs to be done!I feel quite excited for us all as there’s hope there, for us all. I’ve written out the story. In full. Can email it to anyone interested. Just send me email address. 💋 x

[StriatedCaracara]

covid19-recovery.org/storie...

Is a good place to share stories, they are really varied.

I believe also the intention was to make this available to researchers.

I think now updates are also going on Twitter..again you can make yourself anonymous by giving yourself another name.

[FTSP]

Not while having Covid, but before I developed symptoms I had a couple of days of extra energy, and this fits a pattern I've had since my early twenties: If I had one of those days where I woke up feeling great, started thinking about starting a new exercise programme etc it usually ended in me going down with a cold or similar.

Since being more obviously symptomatic for autoimmune diseases the pattern is the same, although the waking up feeling great is more muted - but basically half a day of feeling almost normal means I'm going down with something.

I think I got more time with covid because I'd had the 4 jabs, so my immune system was busy for longer before the symptoms broke through.

What I think is going on is that basically my immune system is so busy fighting a new infection it leaves me alone for a bit - then the infection becomes obvious and I feel rotten again anyway. But those hours/days when I'm fighting something other than me are lovely, and I wish medicine would find some way of reproducing that effect.

I've wondered if other people with autoimmune diseases have noticed the same thing - I guess this is the place to ask!

[WendyWoo50 in reply to FTSP]

Thank u so much for sharing that. It certainly goes along with what I experienced as well as what I am thinking.

Once I was negative I had a really bad day but the next day and those following have been good. Like a miracle, which I am accepting extatically while it lasts 💋 x