essential thrombocytosis

[Preacherswife]

Thank you for allowing me to join this group. I was diagnosed with JAK @ and essential thrombocytosis this past August. I have been taking Hydrea 500 mg on MWF I was having no problems with this dosage and my platelets were staying in a good range.

This past month I started having trouble with my vision, very dry skin and sores in my mouth. I went for my regular eye exam and told him my vision had changed, He looked in my eyes an said are you taking any new meds since our last visit. I told him yes I was taking Hydrea. He immediately looked it up and asked me did I have dry skin and sores in my mouth. Which my answer was yes to all 3. Before he examined me he thought that it was my retina but it was not, He said my cornea was swollen, He gave me steroid drop and it is a lot better.

I called my hematologist that afternoon and they called back and said that I was having a reaction to the hydrea and to stop taking it. He called me in a Rx for Anagralide 1 mg 2x's a day. I took 1 on Saturday afternoon and about 6 hours later I had a lot of nervousness in my chest. I did not take this on Sunday because I had to go out of town. I did take a dose Monday morning and no side effects, That evening I took on and had the same nervousness in my chest.

I have stopped taking it and am now taking 25 mg of CBD and 81mg baby aspirin,

Has anyone else tried CBD? Or had side effects from Hydrea or Anagralie?

[hunter5582]

Anagrelide can cause a number of heart issues including arrhythmia, torsades de pointes, ventricular tachycardia, and palpitations.

Anagrelide comes with this warning.

Call your doctor at once if you have:

chest pain or pressure; fast or pounding heartbeats, fluttering in your chest, and sudden dizziness (like you might pass out) epocrates.com/online/drugs/...

Suggest that an urgent call to your hematologist is indicated. This is not a situation where you want to take chances even if this is not a cardiac issue. Suggest that you not refer to the possible cardiac symptom as "nervousness in the chest." Tachycardias are disproportionately misdiagnosed as anxiety in female patients. Be very precise in describing the symptom you experience after taking anagrelide.

Like you, I was hydroxyurea-intolerant. I did much better on the interferons, Pegasys/Besremi. Note that we are all different in how we respond to these medications. Pegasys is recognized as a preferred treatment option in the NCCN Guidelines. nccn.org/patients/guideline...

You do still have other options to pursue. Wishing you success in identifying the appropriate treatment option for your situation.

[bruddery]

hello there. I was on hydroxyurea for quite a time but started getting sores in the mouth, culminating in my tongue swelling preventing me from being able to eat normally. I was referred to the dental hospital to see whether anything could be done to ease the problems. They gave me a steroid mouth wash which helped a little, but the tongue swelling was continuing. I was then given Anagralide, I had a most dreadful reaction. I had a constant whooshing noise in the ears - it actually felt like a train was going through at a phenomenal speed, my heart was constantly racing and I felt dreadful. My haematologist took me off it immediately. I was lucky enough to be given ruxilitinib (that was about eight years ago) and I’ve been fine since. (thank God) I was PV but I am now myelofibrosis…. Hope you get sorted out soon. Best wishes. Janice

[Mostew]

I’ve t aken CBD Oil 10 ,4 drops a day since starting Hydroxy. Also take turkey tail mushroom powder which studies have shown can help with chemo side effects.

Don’t know if they have helped.

Do hope you find something suitable for you

[Mishie14]

yes, I also had the same reactions and more as you note. I was on HU for 4 months, however, before stopping. Next was Anagrelide which started OK but cardio side effects started when dose was increased. Immediately saw cardio who gave me several tests and who had me wear a monitor for several days and then questioned continuing with that drug. Then came 2+ months of no ET drug but for low dose aspirin and vitamins. It took time for residual traces of both drugs to end. I started #3 drug peginterferon which has made all the positive difference. Slow, low and steady was a conscious decision due to reactions to previous drugs. Nearly a year later and am very happy with platelets dropping and minimal side effects. It also increased liver enzymes as the other drugs did but this time taking milk thistle extract as found on this site has significantly helped. These ET drugs have possible serious side effects that may or may not result as we all react differently. Please speak up about anagrelide cardio and don’t worry about changing again. Thankfully there are more treatment options and more coming in the pipeline. Good luck.

[Cja1956]

I was taking hydroxyurea from 2019 to June, 2023. During the second half of that period, I was hospitalized with pneumonia, got diagnosed with COPD (I never smoked), sleep apnea and a chronic cough. I also developed mouth sores and very dry skin. My hematologist didn’t want to change me because I had already been on Jakafi and Anagrelide earlier in my disease. Anagrelide had caused similar symptoms that you described and Jakafi had caused anemia. However, I was finally taken off HU last June when I became pre-transplant ( I have post ET MF) and started Jakafi again and all my lung issues went away. Unfortunately, there is no “magic pill” we can take that won’t have side effects or that will cure us. We have to do the best we can with what’s available.

All the best,

Cindy

[30371madison]

Good morning, i have been on Hydrea for 9 months. I have the same side effects with the mouth, headaches daily and body fatigue. My doctor said the hydrea has the least amount of side effects

Good luck with the CBD

[Preacherswife]

Well the CBD did not help. I cannot take Hydrea or Anagralide..... What's next???????

[hunter5582 in reply to Preacherswife]

The logical next step for cytoreduction is Pegasys, which is the other first-line treatment option for ET. Note that anagrelide is considered a second-line treatment option due to its side effect profile. See the NCCN guidelines. the other options to opt out of cytoreduction if you feel that is in your best interests. Suggest reviewing you options with a MPN Specialist. mpnforum.com/list-hem./