Essential Thrombocythemia Jak2

[Gillyfran]

Hi to you,

I’m here because my husband has this disease. He is 82 and taking Hydroxycarbomide (I think that’s how it is spelt). This all began to rear it head about April 23 but was finally confirmed September 23. He gets blurry eyes and on occasions a dizzy head. He lost about a stone in weight but that has stabilised. Does anyone else get the dizzy spells and when they occur is it something we need to report to the doctor. I hope my question doesn’t seem trivial.

Kind Regards

Gill

[Cat1001954]

hi I would defo tell doctor it doesn’t hurt to ask x

[Bazzak]

I had exactly the same not lasting too long and happening once or twice a day, put on hydroxy and when my platelets dropped to near normal I have had no more problems.

[Spanelmad]

No question is ever silly!! I would mention to.your heam keep a record of when and how long it lasts.Could be he's not hydrating enough.

[saltmarsh]

Dizziness is a side effect of this health issue and the hydroxyurea. I'm 77 and have been dealing with pv for over 4 years. Initially the dizziness for me was quite bothersome but I finally realized that I wasn't drinking enough water, particularly in the morning. For the last year I make it a point to drink 12 ounces when I first get up, another 12 with breakfast and then as needed throughout the day. I've also cut back on alcohol - a diuretic. For me that solved the problem, and I have virtually no dizziness. I will tell you that prior to this change I thought I was drinking enough water but I was very wrong. Good luck and hopefully more water helps.

[RedCardRob]

Questions on here I treat as educational for MFN's because we're all in this. As saltmarsh stated alcohol reduction is good and fairly doable in UK as the exchequer uses it as a stealth tax! I found the dizziness and eye fuzz go when I started treatment but any recurring times have occurred when not having rehydrated more than the normal 2.5 litres a day after exercise or during a hot day.You should definitely let his doctor and his heamotology care team know any increase or new symptoms.

[HoundSept2022]

Dear Gill

I was getting dizzy spells 5-6 months after I started taking Hydroxycarbamide. Every time the dose was increased, I seemed to get an interesting and bothersome side-effect. All of these settled down after a few months. I think the dizzy spells lasted three months and then went away. But get your husband to speak to his medical team.

I hope his side-effects/symptoms settle down.

[hunter5582]

Hello and welcome. You are asking a very reasonable question that definitely needs to be reviewed with his hematologist. Blurred vision can occur for a number of reasons which may of may not be related to the MPN. The dizziness is a known symptom of MPNs and can als be a side effect from hydroxycarbamide. Sometimes the only way to tell the difference is when the dizziness began, before or after the hydroxycarbamide.

Hopefully, your husband is already seeing a MPN Specialist rather than a regular hematologist. MPNs are rare disorders and most doctors have little experience with them. Here is a list. mpnforum.com/tsr-the-list/

WIshing you both all the best.

[ALlady]

I urge you to consult with his physicians. Hydroxyurea caused my hemoglobin to decrease to the point of anemia and I was experiencing lightheadedness. An adjustment of med dose took care of the issue. I started at 1000 a day and now take 500 M -W-F and blood numbers are perfect. It’s ttial and error for a while.

[Exeter21]

I changed from Hydroxy to Peg Interferon because of similar side effects & gastric issues. It went once on the Interferon injections. Really important to tell haematologist as I do feel as we get older we get dumped on the back burner. So time to speak out & ask for alternative. Julia 👌

[Tipsy2023]

Gill not Trivial at all the dizzyness has been a real problem for me too and is quite debilitating.Prochlorperazine a prescription medication has helped when the feeling has persisted . But I don’t take all the time . I have also recently tried the pressure point wrist bands for travel sickness which t think does help . Easy to try boots sell them .. good luck these conditions have so many apparent random symptoms which I discover on this site are commonly experienced. My doctors tend to tell me not related but I believe they are so always best to ask. L