Hydroxyurea and Sun Exposure

Well, I'm a street photographer (avocation, not occupation. No one pays me except the Social Security Administration), so I do spend time in the sun (a couple of hours or so when the light is right for film noir silhouettes), but other than that, I'm not a sun whorshipper by any means. When my hematologist and I began the Hydroxyurea, I had a platelet count that was in the millions and ET that had been undiscovered and untreated for 10 years. So, I had quite a challenge in getting my platelet count down to the normal range. My hematologist had to tinker with the dosage to get it right, but he was impressed with my tolerance for the Hydroxyurea and it took months to find the right dosage for me. I'm taking 500mg daily, and we worked the dosage out to one per day for two days, then 2 doses for a day, then back to one for two days. So, my dosage is 1, then 1, then 2, then back to 1, and continues like that. This keeps my platelet count below 400,000, but I have had some foods that spike my platelet count, such as dairy foods, green leafy vegetables and fatty fish (salmon and tuna). Once I discovered this, I eliminated those foods from my diet and my platelet count then returned to normal. So, what I have learned is that we can't eat whatever we want to, even if it is foods recommended by doctors and nutritionists. Their recommendations are for the general population and for people with Essential Thrombocytopenia (low platlet count). Trying to find foods I can eat while maintaining a normal platelet count has been a problem. On the one hand, a high protein diet keeps type 2 diabetes away, but, according to doctors I've had, it is a burden upon my kidneys. Despite this, I have had NO symptoms of kidney disease at all, yet, these doctors (four of them, so far) keep telling me I have kidney disease. The only evidence they have for this is my eGFR, which started out at 2, back in 2009, rose to 3 by 2014, then 3a by 2017 and, according to doctor number four, is now "wavering" between 3a and 3b, although she told me, in 2024, that my eGFR had dropped from 3a back down to 2.

@jodyjazz Yep, I've been aware of sunscreen for decades, but I haven't tried it since having ET because I haven't been convinced that the rashes are from sun exposure. Prior to the pandemic, I had no rashes and my face wasn't turning red from being out in the sun. So, I assumed the rashes were "mask rash" from wearing the Covid masks. However, since that ended, the rashes are still there on my cheeks. If I do spend much time in the sun during the summer, my face does turn red and I feel lethargic. But this subsides after I'm indoors again, after a few hours. If, on the other hand, I am out in the morning when it's relatively cooler (in Seattle), I avoid the red face.

What I have read about ginger oil is that it is good for skin health in general. It's not a substitute for sunscreen, that I know of, and that's not why I want to use it. I want to see if it can eliminate the rashes on my face, though. I'll let you know if it works.

Please do! I use vitamin C religiously and believe it helps protect my face from sun--a bit. I also do not go out much after 10am and before 4pm............I hate the restrictions, but hate the red bumpy face too.

@garyr443 Sorry. I got you confused with someone who is newly diagnosed. Lotta traffic on this thread that has strayed from original topic. Not interested in alternative treatments discussed here, so will butt out of this convo. Best of luck to you!

No problem! Have a good one.

@janemc Thank You so much. I was taking 1 tablet once a day but that was not lowering it. The he had me take 2 tablets on Monday, Wednesday and Friday then 1 tablet the rest oh the days. It did not affect my white and Red blood readings. They are500mg.

@jodyjazz Getting back to Hydroxyurea and sun exposure, this sounds like yet another side effect of Hydroxyurea, to me, or at least it's a serious concern. One more reason to replace Hydroxyurea with foods that can lower platelet count. Afterall, that is the only reason for taking Hydroxyurea in the first place, i.e, to reduce platelet count. It doesn't do anything else that is necessary to anyone with ET. So, if it is causing an increased sensitivity to sunlight, better to ditch the HU for something benign, like food. All the more reason to use cranberry juice (assuming it is as effective at reducing platelet count as I have read it is, of course).

@garyr443
Well please let me know how that works for you over time. If cranberry juice can lower and keep down platelets, what a win!! Then you have to wonder how much juice is the correct amount and if heavy doses, one must investigate what the cranberry juice is doing. Near as I can tell there is "no free lunch". Everything causes something else.

@garyr443 While it’s noble that you’d like to replace medications for Essential Thrombocythemia with ‘benign’ treatments such as food and cranberry juice, for some people, that simply isn’t going to get the job done.

Essential thrombocythemia is a myeloproliferative disease with a high incidence of thrombotic (clotting) complications, especially cerebral, myocardial, and peripheral arterial thromboses. Abnormal platelet function may contribute to these complications. Often, initial treatments such as a daily baby aspirin are prescribed to help keep platelets from clumping together and forming clots. In some patients, with a high rate of proliferation of platelets, medications are necessary to keep that level stable. That’s where drugs like Hydroxyurea play an important roll. While some foods may help minimally to reduce platelets, people with myeloproliferative diseases, churning out excessive amounts of platelets or red blood cells, daily medications become valuable tools.

We’d all love to be able to just drink juice for our cures.
When I had AML (acute myeloid leukemia) I had a friend tell me all I needed was to drink raw asparagus juice daily. Right…well, my doctors called in the big guns from Big Pharma with intensive chemotherapy and a bone marrow transplant. Pretty sure the asparagus juice would have left me pushing up daisies from the underside for the past 7 years! Now I’m healthy, cancer free and here to be a mentor in the Blood Cancer support group.

We have to be very cautious when suggesting people ”ditch” the drugs their doctors have prescribed. That goes against the Community Guidelines of Connect. We are not medical professionals so we cannot diagnose or offer treatments. But we can use our personal experiences to share what has worked for us.

I wish you well with your cranberry juice experiment. But I do want to caution you that cranberries contain oxalates which can increase oxalate excretion in urine, potentially contributing to stone formation. For people with chronic kidney disease (CKD) such as yourself, cranberry juice might pose risks. Kidneys affected by CKD struggle to remove potassium from the blood, and high potassium levels can lead to serious heart and muscle problems.

You’ve made several comments about your 4 doctors informing you that you have kidney disease with a rating of 3B. But since you’re not having any symptoms, you really don’t believe them. They cautioned you about the amounts of protein in your blood from your Keto diet.

Kidney disease is referred to as the Silent Killer. For most people there are no symptoms as the loss of the filtering ability slowly develops over time. Until it’s too late and serious but irreversible damage has happened. According to the National Kidney Foundation patients with a 3B rating have ‘Moderate to severe loss of kidney function (that’s the ability to filter toxins) (eGFR 30-44 for 3 months or more).
https://www.kidney.org/kidney-topics/stage-3b-chronic-kidney-disease-ckd
So, we’ll all be curious to see how well your cranberry juice to lower platelets is working out for you. I hope you’re successful! If it doesn’t work what is your next option? Curious, what is your platelet level?

@jodyjazz My hematologist and I had the same problem with the Hydroxyurea: how much is enough and how much is too much? It took months to work it out by trial and error. We did work out a dosage that is 1 dose per day for two consecutive days, followed by 2 doses for one day, then back to 1, etc. It's cyclical. But, there were times when that didn't always work, especially if I was eating food that raises platelets, such as dairy, green leafy vegetables and fatty fish (salmon and tuna). You know, the foods doctors and nutritionists advise everyone to eat for their Omega 3 fatty acids, etc. One diet doesn't fit all. But, as I have pointed out here, several times, the reason I want to stop using Hydroxyurea, if I can, is because it causes my red blood cells to be too low. Then there is the side effect everyone here is talking about: oversensitivity to sunlight. If I can achieve the goal of keeping my platelet count normal without drugs, then my red cell count will be normal, my face won't be red, and that's the way it should be. If it doesn't work, then I'll continue the Hydroxyurea with all the problems it causes.