Connect
Hydroxyurea and Sun Exposure
I recently started taking Hydroxyurea (for ET) with seemingly minimal side effects if any. However, I've been reading about having to avoid the sun rays when taking the drug because of potential photosensitivity, rashes, sunburn and even skin cancer. I love the sun and planning on a getaway to the Caribbean armed with SPF 30 sunscreen. How paranoid should I be in spending time in the sun?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
@loribmt Well, first of all, I'm not suggesting cranberry juice will work for everyone. If it works for me, great. I cured (that means it's gone and doesn't return) Type 2 Diabetes in five months by eating a paleo diet. As long as I continue to eat that diet, I have no worries about diabetes anymore. That experience, i.e, using a simple dietary change to correct a problem without resorting to a (shortened) lifetime of dangerous drugs is what we should all be looking into. Food is not a dangerous drug and our ancestors knew this, long before Big Pharma began making billions while killing millions. And don't give me that crap about how everyone died at 30 before the twentieth century. I'm a genealogist and I know how how long my ancestors lived, which, in most cases, was just as long as people are living today.
Only one of the four doctors I mentioned said my eGFR is "wavering between 3a and 3b." I have never been at 3b. She also told me (you ignored this) that in 2024, my eGFR fell from 3a back 2, where it was in 2009. She had no explanation for this. Another thing, in 2009, when I was first disgnosed with kidney disease, the only criterion for that diagnosis was my GFR. Two or three years later, they began calling it the "eGFR," or estimated glomeruler filtration rate. Why is it only being "estimated" now? Still, I haven't had one symptom of the disease.
Yes, I'm aware of the potential negative effects of cranberry juice. I have carefully studied this and other non-pharmaceutical options. I am willing to accept the risks and I am not promoting this as something for everyone. I'm very much aware that we all have different stories. Congratulations on yours, by the way.
My latest platelet count is 301,000. Normal, in other words. It will be tested again this Friday and whatever it is will be the baseline I'll be comparing my results from the cranberry juice with during my one month trial of the juice. My hematologist backs my decision on this. We've known each other for 12 years and he has a very good understanding of me as his patient.
@garyr443
Its a damn dilemma, isn't it?? Please keep us posted on your progress.
@garyr443
I have nothing but good wishes for you, Gary.
Please give careful consideration to Lori's wise words. She's lived through a lot and has invaluable knowledge.
My husband also has no symptoms from his chronic kidney disease. But if he ignores the diagnosis, he will soon be on dialysis.
Speaking for myself, sensitivity to sunlight is a small price to pay for the multiple benefits of HU:
- easing of the terrible headaches of ET
- relief from the exhaustion of ET
- knowing I'm shoring up my bone marrow against progression.
I'll close by thanking Lori once again for being our angelic monitor.
-
Like -
Helpful -
Hug
2 ReactionsWell, for me, the only side effect I've had from Hydroxyurea is low red blood cell count. I had attributed the occasional effects I've had from the sunlight to other things until I started reading people's comments on a connection to Hydroxyurea. Now that I think about it, the red face and lethargy I sometimes feel from being out in the sun has happened since about 2017, three years after I began using Hydroxyurea. So, until now, I had no explanation for it. But, that said, my question is whether these effects are from my CALR Exon 9 mutation or from the Hydroxyurea. Given that I had the mutation as early as age 52 and didn't know about it until ten years later when my bloodwork showed a platelet count in the millions, I'm thinking the red face and lethargy must be effects of the Hydroxyurea because I never experienced this until after I began taking it. I vividly recall getting on a bus around 2017 or so and wondering why everyone was laughing at me. When I got home, I looked in the mirror and saw that my face was bright red all over.
@jodyjazz Yep, it certainly is a dilemma. For me, the real dilemma is in trying to find out what I can safely eat. I know my paleo diet I've eaten since 2007 works at keeping my A1c normal, but then I'm told that the high protein has been causing kidney disease since 2009. Never mind that I have no symptoms of kidney disease and I feel fine. I keep searching for foods that won't raise my platelet count, but I find conflicting information on this. Last night, I read two websites that each recommended foods for people using Hydroxyurea. There was some agreement between the two sources, but then the foods recommened or discouraged conflicted with each other. Who do I trust? I found out the advice to eat salmon and tuna (which I did for over a month) resulted in a rise in platelet count that subsided after I quit eating salmon and tuna.
@janemc two months ago, for about a month, I did have headaches every day that were confined to the right side of my head. They seemed to be worse at night. I was taking two 325 mg aspirin before bed, which barely helped. But then, the headaches went away after a month or so and haven't returned. Now, this was all highly unusual for me. Until then, I hadn't had headaches for many years. It was just something I never had a problem with. Whenever I was asked if I have any headaches, I'd say, "No, I never get headaches." For me, it's the same with nausea and vomiting. I have not had nausea or vomited since two days in 1996, after eating food at a Chinese buffet for lunch one day. I was running to the toilet every five minutes to vomit for two days. Then it stopped. So, food poisoning. But I haven't been nauseous since then and haven't vomited since then, either. Prior to that epidode, I hadn't vomited in 12 years. I enjoyed the episode of "Seinfeld" in which Jerry says exactly the same thing about himself.
@janemc Well, about the kidney disease that I have never had any symptoms of in the 17 years I've supposedly had this disease, I remain skeptical. I have never heard of a disease that no one has symptoms of. It just doesn't happen. At what point would I have any need for dyalisis and how would I know if I'm still asymptomatic?
@garyr443
Wow it seems you work much harder at this than I do. All the things I love: sun, salmon, red wine---seem to be best avoided. I say that there is something to said for moderation and joy!!
@garyr443
You're a great advocate for your health, Gary. Hooray if that works for you!
My husband's older brother laughed off his chronic kidney disease. Sadly, it ended up killing him. That kinda got our attention.
We each must find our way forward.
@janemc First, sorry to hear about your husband's brother. Was he asymptomatic, like me?
Well, I did have a small kidney stone that painfully got my attention in 2009. I went to the E.R., not knowing what the source of pain was. I had thought it might be something else. When, after three hours of waiting in agony to see a doctor, he asked me what my symptoms were and I told him. He said, "You've got a kidney stone," gave me a packet of chewable pain reliever and sent me home with a prescription for Metformin. As soon as I got home, I looked up Metformin, read that it is known to cause FATAL lactic acidosis, then crumpled up the prescription and threw it in the trash. I then looked up "natural cures for kidney stones." The first thing I found was baking soda, i.e, sodium bicarbonate. I had been using it as a substitute for mouthwash and toothpaste for a year by then (still do), so I put a spoonful of it in a glass of water and drank it. An hour later, the pain had begun to subside, so I repeated this and went to bed. When I awoke, the pain was entirely gone and never returned. After that experience, I began a once weekly regimen of baking soda and water, just to ensure that no new stones would form. They haven't.