Those who have Essential Thrombocythemia

[lindabomba]

Hi, I am wondering those who have Essential Thromboycthemia (ET) if you have chills as a symptom? I was diagnosed with ET in November 2021 and at that time did not have chills. I was on Hydrea for a month and starting getting them so I assumed it was a side effect of the drug. I recently went off the Hydrea for 6 weeks and continued to get chills. So now it looks like they may be symptom of the ET itself and I am wondering if anyone else here has the same experience? Thanks.

[WileyFrench]

I have ET and have been taking hydroxyurea since 2017, and have not experienced chills as a side effect. I don’t think I’ve seen that listed as a side effect but I suppose it’s possible. I’d suggest checking that with your doctor.

[EPguy]

I have ET/PV and also have not had chills when I took HU nor when I didn't. Plenty of other effects on the menu however.

Interferon can cause some chills esp early in the therapy, but you're not taking that.

[Gaithersburg]

I have never had chills and had ET 27 years!

[Conneryfan]

Hi. I have chills when taking and also when not taking hydroxy. I am normally someone with a warm body temperature. Over time I have worked out that for me it is connected to really bad fatigue. The more tired I am, the colder I feel even as far as chattering teeth!!

[lindabomba in reply to Conneryfan]

I have fatigue too as well as chills I believe both for me are symptoms and side effects of Hydrea

[Conneryfan in reply to lindabomba]

It is such a variable illness with many different symptoms, never mind side effects of medication. The chills and fatigue were two of the things going weird with my body that led me to my GP and eventually to diagnosis.

[lindabomba in reply to Conneryfan]

I have both fatigue and chills as symptoms and now there worse as side effects of hydrea

[Uzza]

Hi...I don't have the chills, I actually get quite hot and warm when others don't. I can go out in the cold with a t-shirt while others have to wear sweaters. I am also no longer on Hydrea.

[Inverter]

I have ET and I also have chills, my body temperature is always lower then most people, 35.9-36.1 and when I get 36.7 I already feel symptoms of fever .

In the past I wasn’t like that , in the past my body temperature was something like 36.4-36.5 and fever symptoms was only over 37.5

I believe my low temperature body was affected by ET, and low temperature body made me feel chills very often.

Since I eat more healthy and aspirin, my blood become more fluid and also with more exercise, all those action improved my blood flow and I don’t have anymore chills .

My body temperature didn’t change I’m still on 35.9 but I don’t have anymore chills since I improved my blood flow

[lindabomba in reply to Inverter]

Can you tell me more about what you did to increase your blood flow? Have you had any fatigue? Thanks

[Inverter in reply to lindabomba]

In my case I add chilli and black pepper almost every meal , eat more food rich of omega.

Aspirin one time a day , I eat more fruit and drink more.

And exercise, I usually do 45 minutes cycling in the morning and 45 minutes in the evening.

Doing all those things together made my blood become more fluid. By the way if I stop keep this good behaviour, blood flow get affected again.

Basically after doing exercise I feel like the blood flow improve for 3-4-5 hours , that’s why I spread between morning and night , to cover an extended range of hours . And also morning and night are the critical time because is when the body is stop for many hours .

I was having problems of tiredness and fatigue , but in around 2 months I imported a lot my condition . Now I can walk 1 km and run 5 km and walk another 0.5 km in 45 minutes. While 2 months ago only jump 3 times in the garbage made my legs tired for 3 days like if I did a marathon.

Keep doing exercise, still have kind of feeling of tired legs , especially in the morning , but after little exercise that tired go away . Also my general condition I feel much better , still I have short breath when I walk in the stairs for over 1 floor , but 2 months ago I had short breath for every movement.

Basically between exercise 2 times a day , drink more , eat more fruit and more spicy , I’m kind of managing the situation quite well at the moment. But like I said it’s enough one day skip and feel again lot of numbness , this make clearly feel doing those things have a huge good impact in my health and I cannot give up

[lindabomba in reply to Inverter]

Wow I think that is amazing thanks for sharing it. I can see how increasing your blood flood would help. Thanks again for sharing.

[nightshadow]

I was diagnosed in 2020 and I haven't had chills as a side effect of either HU or ET either.

[Hazelnut2020]

I was diagnosed in 2003 and was put on HU for 3 months. Didn’t experience any chills. Since then was just on a baby aspirin daily. I don’t believe if I ever had chills it was related to ET or side effects of HU.

[Exeter21]

Definitely the HU. I was on it & cold shivers Always cold . Now off it & body normal again . Probably doseage wrong but I was on lowest Julia UK

[lindabomba in reply to Exeter21]

I am on the lowest dose I did go off for 6 weeks and continue after that still having the chills but not as bad so at this point both the fatigue and chills are a symptom for me of ET and a side effect of the Hydrea just trying to find some ways to deal with as my oncologist is helping me at all with it. Thanks for your time.

[kitttycat]

Hello, I get chills and need at to wear a big winter sweater to bed at times or around. Once they lasted for almost a week ( my temperature at that time once went below 35 when I checked it) and now I get chilled just now and then, I never know when. I was wondering if it was the hydroxyurea, because I never had this before. I have been taking it for 1 1/2 years. I also thought maybe it was something to do with the immune system. My nose has been very cold a few times also when I have been sleeping at night. When I visited the walk in clinic, the doctor told me it was a chemical inbalance although I never received an explanation , I hope you find out what this is. The very best to you.

[lindabomba in reply to kitttycat]

Thanks for sharing. Before I started taking the hydrea I did not have chills...I was on it for about a month and starting getting them. I went off for 6 weeks at the end of April and now get chills although they were not as often or as intense comparing to when I was on it. I did go back on the Hydrea on 6/17 and the chills are worst and so is the fatigue. For me the fatigue and chills are both a symptom of ET and a side effect of the hydrea. Just trying to find some things to deal with it.

[Scrollernut]

Have ET for 3 years and Hydrea but no chills. In fact I can’t the heat like I use to. Makes me dizzy and almost sick. And that’s bad as we’re having a heat wave here in Chicago. Been staying in a lot🥺

[KentBee]

I have the opposite and suddenly come over so hot and my blood feels like it is boiling, not menopausal as well over that age.