covid and ‘the itch’

[S031251]

I posted a few months ago that my itch had returned. I didn’t think at the time to say I had just recovered from covid - so - two weeks after testing positive the itch returned but 6 weeks later the itch had gone. I am just assuming that covid messed with something because I am fine. So pleased rux is still working well.

Anna

[hunter5582]

You will find multiple references to this issue with COVID in the literature. Here is one sample.

health.com/condition/infect...

Given that we have MPNs with the proclivity to increased cytokine activity, mast cell activity and hence itchy skin - it seems quite reasonable to think that COVID could trigger the return of the dreaded itch. Glad to hear that it resolved.

I hope you let your MPN care team know so they can be informed for future reference. Thanks for letting us know. Thankfully, many of us, myself included, do not encounter the itch with COVID. Thank goodness!. COVID is bad enough as it is.

All the best tto you.

[S031251]

Thanks for your response Hunter. I did inform my care team at my last appointment. Itch is such a lame word for what those of us unfortunate enough to have experience of it. I’m just thankful I don’t have it now thanks to Rux.

Anna

[JP1952 in reply to S031251]

Am so pleased for you that the itch has gone

Like you my itch has stopped since taking Rux, I live in dread that it will return and totally agree with you that itch doesn't nearly cover a description of what it's like.

[ainslie]

that’s interesting, I haven’t has Covid, but I noticed increased itch after vaccines, discussed it with expert Haem who said he noticed same with other patients, for me the increase lasted a few months

[Steve_Essex in reply to ainslie]

Exact same thing happened to me, after my booster last year within a few days I had terrible itching after showering… worst thing I’ve ever experienced.

I managed to find taking beta alanine 30 mins before a shower worked and stopped the itching completely to the point I just took as part of my morning routine as didn’t want to risk the itching coming back.. and didn’t stop taking for a few months… when I did, the post shower itching had stopped too.

To this day I’m pretty convinced it was linked to the vaccine… also get mild itching before I come down with a cold… potentially the cytokines and white blood cell response triggering it..

Have mentioned to specialist, but seemed a bit dismissive.. now I’ve read this post will mention again so it’s recorded and hopefully linked to other cases… the more data we can provide the better!

[ainslie in reply to Steve_Essex]

Can I ask you how much beta alinine you took, I tried 800mg and it made me very tingly for a few hours.

[EPguy in reply to ainslie]

Good coincidence, in another thread I posted this:

"Some people have reported tingling of the skin after taking large doses of beta-alanine."

webmd.com/vitamins-and-supp...

If one can stop the painful itch and have a reasonable level of tingling instead, could be a good trade off, it if actually cuts the itch. It seems the dose level makes a difference., but they don't define large. Your experience suggests 800mg might be "large".

[ainslie in reply to EPguy]

I agree I would rather have the tingling than the full blown itch attack I used to get pre Rux and UVB, these days I only get slight itch post shower so thought the BA worth trying but for me now the tingling was more than the itch, maybe a lower dose is worth a try.

[Steve_Essex in reply to ainslie]

I went in quite large.. 2g.. after some research, it seemed safe even at those levels so I figured If that dose can’t initially knock it on the head, then it won’t work…

Should also add, im 6ft 4, 95kg so can tolerate higher doses.. if you weigh around 50kg, I wouldn’t recommend 2g!, 800mg - 1g should be more than enough

[EPguy in reply to Steve_Essex]

Interesting note on the weight vs dose. Another current thread has discussion of this for IFN doses, where weight is not conventionally considered, but Dr Harrison apparently does consider it.

[BlushNoisette]

Hi, I have PV and I'm taking 15 mgs ruxolitinib morning and evening. I came down with covid in early October. I had a bad cough for a few days and then after that just continued to feel like I had the flu. It took 10days before I tested negative. Although the dreaded itch didn't make an appearance in the first 5 or 6 days of covid but then it kicked off and became as bad as I ever experienced before I began taking rux. So painful .... stinging and pricking like being stung by a swarm of bees. I contacted my haem team and asked if the rux dose could be increased. I had to go to Oxford for blood tests and a consultation with my consultant. I explained that I had a similar experience with pruritus after a bad dose of flu in 2018. At the time I was participating in the Majic Study and so the rux dose was increased by 5mgs for am and pm. My consultant made the same decision again. I have been on 20mgs Rux twice per day for the last 10 days. The pruritus is much better now but it has been slow to reduce and I'm still reluctant to shower but hopefully that will change in the next few days . My husband came down with covid about 24hrs after me. He didn't have the cough but experienced much worse congestion than I did . But we're both still suffering fatigue . This is very unusual for Steve, he usually bounces back from a cold bug after about 2 days . We keep saying that we could sleep for England . I'm finding that I get "falling down" tired doing very little . I hope that this info is helpful to others.

I have had 4 covid Jabs and will get a 5th in a few weeks. Steve has just had 3 jabs and will get his 4th in late Nov.

Best Wishes