ET and Covid complications

[Emmyroos]

Has anyone's doctor specifically assessed their risk of Covid complications for a person with ET? I've read a few reports about blood clots being prevalent in healthy individuals that have complications from Covid. Since we ET'rs, have high platelet levels, one would think we'd be at an even higher risk of blood clots related to Covid. Has anyone read or have been told anything specific to our risks?

[Indigo42916]

No, because ET is such a rare disease, I presume it will be a long time before they have enough data to understand COVID and thrombosis complications. It will certainly be interesting to know more.

[Emmyroos in reply to Indigo42916]

I agree - it is so rare that any little data that could be collected would not be statistically significant to draw any sort of correlations between the 2 diseases. I was just wondering if someone's doctor has said anything about ET and covid. I'm guessing those of us with all those excess platelets cruising around with nothing to do will want to stay the heck away from a disease that causes spontaneous blood clotting in perfectly healthy folks. It just makes sense to me. I haven't had a doctor say anything to me - wondering if anyone has.

[Hemaeohisto13]

Before I had Covid I noticed my platelets were stable around 700-800 for years. They increased to 1 million at my last visit a month ago. I had Covid in July. I have been suffering long term side effects since shortness of breath and cough. The hematologist was concerned and had ordered a CT scan and sent me to a pulmonologist because he was concerned about PE. Everything was normal. Pulmonologist stated I’m one of those long haulers. I’m now put on hydroxyurea 500 mg. I just picked up the medication today and haven’t started. I’m a little nervous. Not sure if there would be a correlation between the Covid illness and increase in count. I was hoping I wouldn’t have to deal with this at 35 and could get by with aspirin but unfortunately not the case. No explanation from any physicians and it’s very frustrating.

[Emmyroos in reply to Hemaeohisto13]

I'm so sorry to hear you're still suffering the effects of Covid. I'm very glad that you did not have a PE. Here's hoping that your platelet levels go back down after all the Covid (and the aftermath) works its way out of your body. Perhaps your count will decrease and you will be able to get off the hydroxyurea? I'm not sure how that all works. I was also diagnosed with ET in my 30's, while I was pregnant. My platelet count has been increasing steadily since I had my baby a year ago which is worrying, approaching the 1M mark. Wishing you the best!! Good luck with the new medication and a full recovery!

[Hemaeohisto13 in reply to Emmyroos]

My doctor said I will be on the Hydrea indefinitely. The platelets just keep increasing. He told me he was trying to avoid the hydrea and we were able to for years due to my age and overall being healthy. Speaking of pregnancy, I didn’t get diagnosed till one year after I had her. I always questioned if it was due to blood loss during the labor and emergency c-section. I lost so much blood and they almost had to do a transfusion. Always wondered if it put my body into overdrive. I even lost so much blood weeks after. The hematologist assured me that wasn’t the case but I’m still curious to know if there are some studies that show anything related trauma and ET. Many doctors want to call it a disorder but is has so many characteristics of a cancer as well as an autoimmune disease.

[Emmyroos in reply to Hemaeohisto13]

In response to your comment about trauma initiating ET - I also had a post-natal experience with my first born that left me wondering if that lead to the "genetic insult" triggering over production of platelets. Childbirth etc is all a physiological traumatic event. I think your questioning of your experience during and post labor being related to ET is entirely reasonable.

[yarrowleaf in reply to Hemaeohisto13]

Hey Hemaeohisto13 !!

It is interesting, your bleeding, cause I too was sent to the cancer unit because of mad mad bleedings. I got into menopause whan not more than 40 and then when 58 I suddenly started bleeding again. I did not think much about it, but it got worse and worse. At last I had to wear baby nappies to keep the flow in.

I was scanned and fiddled with in any way, they settled on wanting to remove my uterus. But then I went furious,and demanded a test, and there it was. After the first Pegasys jab, the bleedings stopped, but surely they they have had something to do with my ET. OK-- whether I started bleeding because of too high number of bloodplatelets or the cancer was "shocked into start" as with you, I still do not know. Docs up here are very stingy about info.

Greetings

Yarrowleaf

[ts75 in reply to Hemaeohisto13]

Why were you put on hydroxy? Because platelets were 1 mil? I’m around 1.1 myself and not until 1.5 medicin should be necessary (in the Danish system at least) if you’re otherwise young and healthy. I’ve heard hydroxy might have som long-term effects which is why one should be careful with it if you are young. I know it’s standard treatment in the US but I would make sure to ask a few more questions as to why you should go on it now! Just my thoughts but for me personally, I don’t have any ET related symptoms and am only on aspirin so don’t want to risk side effects if it’s not for any good reason.

[Hemaeohisto13 in reply to ts75]

Yes, I agree with you. I have been very skeptical about the whole thing. I am very aware of the long term effects. I’ve been having symptoms related to my ET and they had already been concerned about me having a superficial clot. I thought that a DVT would be more justifiable for putting me on HU. He just kept saying that he was very concerned about my platelets jumping so quickly in 3 months from 700 and I went back in another 3 months later and they increased another 100. When I went in to follow up with shortness of breath and dry cough following Covid he immediately sent me for CT to r/o PE which there were no findings. I had long term complications with my asthma and Covid for months. I’m not sure if this had any to do with it. I’m very frustrated with lack of answers both with Covid and with this ET that I’ve had for years. I have been on the aspirin since 2014 and he has had me on it since but this last visit he sounded concerned. He told me before putting me on daily aspirin that I would probably never have to take HU since I’m young and healthy but 6 years later things have changed. I honestly don’t even know what to ask because I don’t fully understand this condition other than my bone marrow makes too many platelets. And the JAK2 mutation was not even found in my bone marrow biopsy back in 2014

[ts75 in reply to Hemaeohisto13]

I guess if you had a blood clot previously, that immediately put you in a higher risk group and, hence, medicine is a good idea. Are you in the US? I would definitely try and push for Interferon because of your young age, but I think in the US that is very hard to get! How about Anagrelid? That's another option for us in Denmark (where I'm from) if you are young.

[Hemaeohisto13 in reply to ts75]

Yes, I’m in the US. I will discuss with my doctor if there are other options but I’m sure unless I report side effects they won’t initiate another more expensive medication because of insurance coverage. A prior authorization would be needed and they would want justification as to why a more expensive medication is necessary

[Emmyroos in reply to Hemaeohisto13]

I'm in the US also. I lived 5 years in Australia and this type of insurance stuff was NEVER an issue. I felt decisions were made in the best interest of the patient. Period. Here in the States, we have to question everything. It's so sad.

[yarrowleaf in reply to ts75]

Hey ts75!

There was a discussion in here years ago about USA and Pegasys. I think the lack of Pegasys users were caused by the horrible price. Later I spoke with a doctor and he agreed that if 2 persons both wanted Pegasys, but could not afford it, he would give the injections and such see to that these 2 persons could share a dose ( which is, I think, 165ml, and we only need 45ml (normal dose) each person.

I know it worked, but I have forgotten the names of the persons.

Yarrowleaf

[Hemaeohisto13 in reply to yarrowleaf]

To go to such lengths for medication is unacceptable. I am a medical assistant and histotech in the medical field for so many years and I cannot tell you how furious I am with the industry in general! Doctors treat patients like customers. It doesn’t matter if you go to a small business or a corporation. The small businesses are competing because they are trying to survive and don’t want to be swallowed by the whale and the corporations treat you like you don’t exist. They are all fake and only in it for the money.

[yarrowleaf in reply to Hemaeohisto13]

Agree fully, Hemaeohisto13. It is not only USA, though. Something strange is on its way (call it greed unlimited ) . There are so mush doublestandard everywhere. We (in DK) have state pension, but as soon as you're pensioned off, you turn into a second class human and you're forced to thankful for everything all of the time. To get bad conscience, just because you live on. Hospitals are worst. University Hospitals double worse !! People act like they were rats and not higly advanced creatures.

[hunter5582 in reply to Hemaeohisto13]

The fact that cost drive drug formularies is a reality nearly everywhere. Here in the USA we run into it all the time. People in the NHS in the UK, Canada and other countries run into he same thing - particularly if you are over age 60 in some countries/programs. The cost of PEG-IFN is about 60x or more - so it makes sense from a bean counter's perspective. The efficacy of treatment and potential side effects are a concern that the patient may have to fight to have considered.

In the USA, HU and PEG-IFN are both off-label for treating ET. There are no drugs approved for treating ET in the USA. HU = approx $70/month. Pegasys = approx $4,400/month. It is much easier to get HU approved in nearly every formulary. It can require considerable extra work by both the doc and the patient to get Pegasys approved.

Reading through the post a couple of things occurred. ET is classified as a neoplasm (cancer) - thus the "N" in MPN. Many of us call it a cancer with a little "c" rather than a big "C." It appears some docs did not get the memo when WHO reclassified MPDs as MPNs in 2008. I did not see reference to whether they ever find a driver mutation other than an initial negative on JAK2. Did they every find one (JAK2 v617f, JAK2 exon 12, CALR, MPL)? Did they ever check for non-driver mutations?

Reading over the profile you describe I can understand the concern about needing cytoreduction even though you are in your 30s. The doc should have reviewed all of your options as well as the risk/benefit profile of each choice. Those would be: Hydroxyurea, Pegasys, and as second tier choices Anagrelide and Jakafi. Simply giving you hydroxyurea without reviewing other options would not be making a fully informed decision. The review perhaps should have also included only changing the blood thinning prescription (something other than one low-dose aspirin/day).

I imagine by now you have reviewed the literature regarding hydroxyurea so you know how it works, what the benefits and risks are. I hope you were given proper handling instructions since HU is a toxin and it is important to protect others in your household from inadvertent exposure. There are specific precautions that are needed if you are sexually active as well.

You are the only one who can make a decision about whether HU is the right decision for you. If you have any questions or concerns, suggest you consult with a MPN Specialist for a second opinion. Here is a list just in case you have not seen it. mpnforum.com/list-hem./ .

Hope that helps.

[Hemaeohisto13 in reply to hunter5582]

This is another thing that pisses me off...I am still capable of reproduction and that alone should automatically make me qualified for drugs that are more “expensive” especially if it will be safer. I am also on hormonal contraceptives but I have found out through another of my providers that two of my medications decrease the effectiveness so then what?!...this specialist prescribing the Hydrea should have already known better.

[hunter5582 in reply to Hemaeohisto13]

I actually think we should all qualify for the drug that best suits our needs and preferences - not just whatever is cheapest. The decision should be made y the physician and patient based on the patient's profile/needs, desired treatment outcome, risk-tolerance, and patient preference. The latter is just as important as all of the other parameters for making the treatment decision.

Even narrowing the question to just hydroxyurea and Pegasys, there are advantages and disadvantages to each choice. That is a decision for the physician and patent to make together - not the health system bean counters. I would note that it is often possible to access the medication of choice is the patient is assertive enough and the physician is willing to do the extra work involved in accessing a more expensive medication. Self-advocacy goes a long way to accessing better medical care.

[Emmyroos]

I've actually just found this information in case anyone was interested.

patientpower.info/myeloprol...

[yarrowleaf in reply to Emmyroos]

Thanks loads, Emmyroosky <3