ET and Hydrea issues along with covid shot.

[MDI55]

I am a 65 year old male and was diagnosed with ET at 50. Up until know I have been only taking a baby aspirin but my platelets won’t from 400 to 700 over the past few years so I was directed to start taking Hydrea. Started 3 months ago with one pill every other day and went down to 520 with no side effects. I went to every day and side effects were still slight with fatigue as my biggest factor but platelets only dropped to 510 so my doctor pushed up to twice a day. After staring twice a day I have been very sick with fatigue and muscle pain. I stopped taking the Hydrea several days ago but my condition has not changed but gotten worse. I now have needle like feelings on my arms , legs and feet. I don’t know of there is any correlation but I received my Covid Booster shot a few weeks ago and it seems to have really escalated since then. Any insights would be appreciated.

[Swede]

Hi, I am not your doctor but I know it takes a while before Hydroxycarbamide makes any difference. My doctor said it could...take up to 4 weeks. I have all sorts of things going on now and then, it changes and sometimes I don't have any! Cn you maybe ring your doctor for aleast a chat on the phone? Take care

[hunter5582]

It sounds like there may be a combination of things going on. Some part of it sounds like adverse effects from the hydroxycarbamide (hydroxyurea). Fatigue is a common adverse effect of HU. Joint pain and edema can also occur. Paresthesia (pins and needles) can occur as a symptom of ET. Maybe the vaccine could contribute, but I really do not know.

Suggest that you review you concerns with a MPN Specialist and discuss an appropriate treatment plan. this should include appropriate target levels for cytoreduction. Note the ET treatment is more about symptoms control and risk reduction than normalizing platelet levels. There is not particular value to having your platelet levels "normal." Some doctors are now using 600 as a target number when a number is used.

silvermpncenter.weill.corne...

Do also be aware the hydroxycarbamide is only one of your treatment options. The other first-line treatment option is PEGylated Interferon. Some of use respond better to one rather than the other. There is also anagrelide and Jakavi as second-line treatment options. We are each different in how we respond to these medications. We each need an individualized treatment approach. Here are a couple of resources on this.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

Please do be sure to follow up with a MPN Specialist ASAP. Hope you get relief and answers soon.

[MDI55 in reply to hunter5582]

Thanks so much for the help and advise. I have never been a big “take a pill person” and believed diet and exercise are the main tool to combat illness but three doctors advised I go on Hydroxy at my age and platelet progression. I have always been hyper sensitive to medicine or had the reverse effect. NyQuil keeps me up and ant-depressants send me into a bad depression. I was also worried that the booster dose may have played a roll but checked on Israel where they have been giving the booster for a while and it seems to have worked there without side effects. I don’t know if the timing of the booster and the Hydroxy worked against me? I went back to one pill a day staring yesterday and actually am feeling much better and made t trough an entire day without crashing at 1 pm for 4 hours . My biggest worry is what my family doctor and I talked about were does the quality of life outweigh the risk of the drug. I have never been as sick as I was last week and it has given me a whole new compassion and respect for people who are on harder forms of Chemo / radiation. I have messaged my doctors at Mayo but due to the holiday have not heard back yet. I was also told before by my old Oncologist that retired not to worry about Platelets at 500 as 450 is now considered the new normal but all of the doctors I have gone to since want my count down below 400 due to age being a risk factor. I can’t help but think about what people have advised me of years ago to retire early as they have seen to many people wait to long and they can’t enjoy any of their retirement years due to health issues. This last bout gave me a real push to retire at 66 this year.

[hunter5582 in reply to MDI55]

The need to balance hoped for benefits of HU with its adverse effects can take some trial and error. We each respond differently to it. Hopefully you will get it figured out ASAP. the good news is that there are other options if you cannot tolerate it. This is something to address with a MPN Specialist (not just a regular hematologist).

Here is some information on HU that may be of assistance.

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

[Wyebird]

Oh dear please don’t stop taking your meds without your doctor’s approval even if it’s going back to the dose you can cope with until you are sorted. Contact your heamo straight away. We all respond to meds differently.

[MDI55 in reply to Wyebird]

Thanks so much for the reply. I did stop for three days while I was so sick but started back up yesterday and actually felt better after taking one dose again. Waiting for a reply from Mayo and hope to get some clarification today . I did not know of anyone on this site might of had their booster shot while stalking Hydroxy and if they had any negative effects. With my first two shots of Vsizer I had no or little reaction but that was before started Hydroxy. The last shot I got sick 12 hours later for about 12 hours but the doctors say that is a good sign as it shows my body is reacting to the vaccine .

[Wyebird]

Hopefully it’s the Covid shot that’s messed with your meds- good luck

[EPguy]

I had a similar experience, started on two HU per day (1000 total) and blood numbers responded quickly (went too far actually) and tingling stopped. But side effects were unbearable after a few months so I went to 500mg/day. Better side effects but then tingling started again. I tried 500/day with 1000/day every third day and it's a better balance of effects.

So it could be there is a compromise dose that will work better for you.

I hope we can advance to Ropeg when it is approved and get off this 1800's drug.

[MDI55 in reply to EPguy]

I checked on the Ropeg and it seems to be right around the corner and testing great fir ET and PV. Sounds like its already approved in Europe. Checking on it as the company web site for the drug was saying approval expected 2021 .

[EPguy in reply to MDI55]

EU approved in 2019. US FDA action is scheduled for Nov 13 this year. They had a rejection March '21 bec FDA can't visit Taiwan, where it's made. We hope Delta didn't put it off again.

I am not aware of test results for ET, do you have a link?

The phase 3 trial and approval in EU was for PV to my knowledge, the company has ET phase 3 trial going on now. I'd guess it could be given off label at least for JAK2+ ET, but that will be Dr and insurance decisions.

[MDI55 in reply to EPguy]

It talks a lot about ET on their web site but I will check with my doc at Mayo to see where its at.

[EPguy in reply to MDI55]

Mayo is a top leader in MPN, it will be interesting to hear your Dr opinion.

[Borage]

My brother slipped on the ice whilst directing traffic at the vaccination centre. It was the same day he had his first dose of Pfizer. He hurts his arms and had a lot of pain which took several weeks to ease.

With the second vaccination the pain flared up again so badly that he phoned 111 for emergency advice and was told to go to A&E. He was diagnosed with Polymyalgia Rheumatica and started on steroids.

These have been reduced now and he is a lot better.

It might have been unfortunate timing that your vaccination coincided with inflammation and made it worse.

I have ET, he has Idiopathic Thrombocytopoenia Purpura, as did Mum.

[Cja1956]

Hello, we are somewhat similar. I am also 65 and was diagnosed with ET at age 52. But a few years ago, I progressed to MF. I had my third Covid vaccine 2 weeks ago and I had my worst reaction yet. The following day I had fever, nausea and I was achy all over. It took about 3 days to feel better. Several other friends who have had it also reported bad reactions. But I’m still glad I had it because I’d rather be sick for a few days than end up in the hospital with Covid.