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| No, it's not Hydrea, it's a hydrangea, which is prettier, though Hydrea capsules are also sometimes pink and blue. |
The Mayo Clinic lists side effects of Hydrea here. But a Web site called Ask a Patient collects comments from patients themselves about how they've responded to various drugs, including Hydrea, and I'm sharing what I got from that site in this post.
To put info together, I looked only at ET patients (not those with other MPNs or sickle cell anemia), since people with other diseases might respond differently to Hydrea. I also looked only at patients who have been taking Hydrea for more than three months, about the time it takes for the drug to work and for side effects to settle down.
And here are a bunch of qualifiers, caveats, and blah blah to think about.
First is that some of the side effects that patients reported are actually symptoms of ET, such as dizziness and fatigue. So disease or drug? Not clear.
Second is that Hydrea doesn't affect everybody the same way or with the same intensity; length of time on the drug and dosage may make a difference.
Third, women on Hydrea outnumbered men by about five to one, and most people were middle-aged (between age 40 and 67). So hair thinning and skin problems? Maybe a function of age as much as meds. (Ladies, once we get to a Certain Age, waking up one morning to find you suddenly look like your mother's older sister is not that uncommon now, is it?)
So, all that said, here's what I found out:
On a scale of 1-5 (five being most effective and helpful), patients gave Hydrea a score of about 3.7. That means that, for most people, Hydrea is pretty effective and its side effects manageable. Most common side effects on Ask a Patient for ET patients:
Fatigue. A little over 50 percent of the ET patients reported they had fatigue, sometimes with fuzzy thinking or forgetfulness. Most indicated that the fatigue was intermittent.
Skin problems. About 30 percent of patients reported a variety of skin problems, most commonly itchy or dry/flaking skin, sagging/aging of the skin, or redness or other discoloration of the skin around hands and ankles.
Hair loss. Hair loss (about 30 percent of patients) was usually reported as slight, though one or two patients reported some patchy baldness.
Digestive upsets. Most digestive upsets seemed to go away after patients got used to the Hydrea. Nausea was most common (25 percent), often with diarrhea (20 percent). Only a couple of patients reported constipation or stomach problems like ulcers.
Mouth problems. About 20 percent of patients reported some type of mouth sores (most common), with sore throat, hoarseness, or thrush reported less often.
Dizziness. Just under 20 percent of patients reported dizziness. Dizziness, again, is also a symptom of ET itself.
Based on the info I saw at Ask a Patient, here are some things I will ask my doc if Hydrea is prescribed for me:
1. What are the possible side effects I should report to you ASAP? Are there any side effects that would constitute a trip to the emergency room?
2. What are some common symptoms that don't need to be reported? Can you give me a prescription to ease those symptoms if necessary? What over-the-counter preparations would be OK?
3. Is medical marijuana OK to use for nausea? (Maybe this isn't something you would contemplate, but it's legal in many states, and at least one person at Ask a Patient suggested it.)
4. Am I on a high dose that could be reduced if I get really bad side effects?
5. How long will it take for the Hydrea to take down my platelet count? What happens if it doesn't?
Be well! And remember: Some people have been on Hydrea for years without any side effects at all. You could be one of the lucky ones.
I am newly diagnosed with ET, and I need a new hip. Doc says I need to get the platelet count down before surgery. I do not want to go on Hydrea, so am just using an aspirin, which has not reduced the count but is holding things steady. I also was diagnosed by a naturopath with a high blood level of lead, and am undergoing a detox treatment for that. He thinks this may have caused the ET. He also thinks my count should go down after the two-month treatment. We shall see. It's worth a try, right? No one seems to know what causes this disorder, in my case the Jak2 mutation, but I did read somewhere that stress and EMF waves may be to blame. We are all surrounded by both these days! I also ordered a CD off Amazon that is a guided "bone-breathing" meditation. Also worth a try. My hubby thinks I'm a weirdo but I believe some of this stuff can work. What is there to lose (maybe a little $$)?
ReplyDeleteStress can indeed run up platelet counts. My dad's lowered when he went on hospice because he was much less beset with stressful doctor visits and tests. His ET did not go away, however. I don't know what's in your detox treatment, so couldn't say if it's a good idea. I hear about a lot of things people are trying as alternatives, but I don't give medical advice or validation because I'm not an expert. I do think it's a good idea to tell your doc if you're trying alternative treatments just to make sure there are no interactions with regular meds you're taking. I try to maximize my general health to give my body the best chance possible to cope with a chronic disease. My platelets are on the rise and I will want more info if/when Hydrea is recommended.
ReplyDeleteI am sorry your husband thinks you're a weirdo. Most people have a hard time empathizing with ET patients because we don't look or act sick. They don't understand that it is scary and upsetting to be monitored all the time, that we're often bone tired, and that sometimes low-level pain and depression are part of the package.
Check in anytime and let us know how you're doing!
Actually, my husband is a kind and understanding man, but he does think my refusal (so far) to take HU is going too far. He sees me limping around in pain, and wishes I'd just take the HU so I can have my hip replaced. I may have no choice.
DeleteHello, I was diagnosed with ET a year ago and have been on a regiment of baby aspirin and Hydroxyurea, 3 tablets daily (500 mg). I have experienced increased pain in my joints and especially my hips. I am an avid golfer and I've noticed much more joint pain and less energy. Trying to play 36 holes is more of a challenge but I'm also in my late 50's. How I take the dosage does make a difference and I'm changing my regiment to 1 tablet every 8 hours to minimize the effect which are increased headaches and joint pain.
ReplyDeleteI've been searching for a natural remedy and a way to get off these meds as its only a matter of time before, I believe, they adversely impact my health. Of course age plays a large part in this but I keep what I believe to be a healthy lifestyle, reduced carbs, large amounts vegetables, fruits and fish and chicken. Once in a while red meat. I live in California so I do like my wine but have moved to reduce consumption there as well. My Fitbit tells me that I often reach 10K steps a day between work, golf and simple walking.
I do have a fair amount of stress where I work but that has lessened with new management.
My question is: Has anyone come up with a natural remedy yet?
Hi, Dana!
DeleteThe short answer is no.
However, I would call the doc it you're having increased bone pain. It may be that your dose can be reduced.
Also talk to your doctor about a "Hydrea vacation." An MPN specialist I spoke with back in March said that he has a patient whose platelets are well controlled who wanted to try some time off the med. He agreed as long as she would continue close monitoring. She has been off Hydrea for several months, just on the aspirin and her platelets have stayed within acceptable limits.
Very little is known about ET and whether we might have periods of remission and progression. It seems to be different for everyone.
Much as a "natural cure"--hot mocha with heavy cream!--would be great, such a thing isn't on the horizon. ET is a persistent cancer that makes your platelets go haywire, and it takes strong medication like Hydrea to fight the effects of the mutation or like Jakafi to turn off the switch in the mutation that causes the platelet cells to go wild.
Jakafi seems to come with fewer side effects, so you might want to discuss with your doc.
Finally, Hydrea and other chemos fight your chances of complications like von Willebrands and Budd-Chiari. It also reduces your risk of stroke.
Kudos to you for staying as active as you can!
Hi there,
ReplyDeleteMy wife has just been diagnosed with ET with the JAK2 mutation.
She is only 43, the fittest person i know and right now is just devastated. She has no symptoms at all for ET and onlyfound out about as she had a miscarriage 5 weeks ago and it was picked up in her blood test then. She swears to never take this Hydrea pill even though the 2 specialists she has seen have told her that she should. Her platelet count is extremely high....it was 1530 4 weeks ago but her reading last week had come down to 1320. I know this is still high. She is on a complete detox right now and is taking ginseng, raw garlic, pomegrantite, fish oil and a few other things that slip my mind right now. Im just wondering if anyone else out there has seen a count so high and also in anyone as young as she is. Any other advice would be amazing. Thanks. Doug
I apologize for posting this just now; I must have missed my alert. Sadly, as noted on our FB page, none of these self-treatments will work. There is anagrelide (Agrylin) or peg Interferon, which may be advisable for women who want to have children. But your wife has a rare disease that needs treatment beyond diet and fitness. I wish it weren't so.
DeleteHello-
DeleteI had counts very similar to your wife. Mine were nearly 1.6 million. Be careful...there are some that have had strokes or heart attacks at those levels. No one wants to take Hydrea, myself included, but it's way better than stroke, heart attack, or something worse.
Hi Doug, My count has been over 1600. I am in my mid 50s, but I've lived a healthy lifestyle, exercising, healthy eating and I've always watched my weight. I was surprised and disappointed too, diagnosed at age 50. My numbers dropped slightly when I began concentrating on clean eating, but not enough. I agree with Jean. There is no natural alternative treatment. They are researching meditation and yoga. I don't think either of those will cure it, but they might slow it down. I also wish there were something I could do to help it.
ReplyDeleteI was diagnosed last May. I was put on very high doses of hydrea and didn't cope with it at all. I ran myself ragged trying to find alternative treatments. Things would work for a short period of time and then my platelets would head back up to, on average,1600...at one stage, a bone marrow transplant was suggested and this was what eventually coaxed me back into the medical system. After several conversations with both my gp and oncology specialist, we made a joint decision that I would try the hydra at a much lower dose. I'm on half a gram a day and my platelets are down to 700. I HATED the thought of being on chemo and have to admit, I was highly belligerent when this all started. I'm on the hydra, I have a wonderful herbalist who has made a brilliant blend for me, which takes care of my liver and spleen,and I actually have now, a quality of life I haven't had in at least three years. I feel amazing after feeling so bad for so long. And its working for me at this stage....doesn't mean I'm going to stop looking for alternatives tho :-)
ReplyDeleteYour comment raises so many issues about how ET patients need better care. Many hemo's just throw people on HU bases on weight and platelet levels and forget about them. Hemo's ignore side effects of medication. And they also ignore diet and exercise advice that could improve quality of life. Patients are left uninformed, sick wit chemo side effects, and looking for alternatives and empathy. I am glad you've found a combo of conventional and alternative meds. I have found that a better diet, exercise, and a dose of fresh air helps me a lot. I tolerate the HU okay, but I went off all my vitamin supplements because I didn't want to deal with too many meds. I felt unexpectedly better! Thanks for weighing in.
DeleteHas anyone had vertigo since starting hydrea? I started on hydrea in June 2016, and 4 months later October 2016, got severe positional vertigo. Have had it now 3 times lasting for weeks. I am 64, female in good health other than ET, also taking a baby aspirin daily and have no symptoms. Did not want to start taking hydrea because of all the side effects, I always feel like I'm in a fog. Other than the vertigo, does anyone know, can you stop taking hydrea if platelets come down? Thanks
ReplyDeleteMany apologies for the delay in posting your comment! I've been away. Platelets usually go right back up if you stop HU. I have heard of HU "vacatiins," but it means more monitoring. A good source of info on documented side effects like vertigo is your pharmacist. I would check with my doc. The dizziness sounds very debilitating. You might start with your GO to make sure it isn't something else. Vertigo is, sadly, pretty common for people in our age group. Let us know what you find out.
Delete1.5 million platelet level 4 months on hydroxyuria 480k platelet level ...miracle drug...love it...no side effects...stop feeling sorry for yourself and live life..high platelets almost killed me..feel much better now...i take 1500mg each night at 10pm..and i dont think about until 10pm the next night..dont feel sorry for myself one bit..life is to short..again in love hydroxy...
ReplyDeleteGlad it worked well for you! It has not worked as well or as fast for me, but I have no side effects. Everyone is different, and some people cannot tolerate HU. I don't assume people are drama queens just because they didn't have my experience with ET.
DeleteI too diagnosed with ET, 1.3 million Platelets at the age 24 years. I am taking hydroxyurea from 6 years, with minimal side effects like hair loss, nail discoloration. However, I love my life and believe to live it fullest. Take the meds every night and live until next night, thats what I do. I am trying to get pregnant, but don't know where it will take me. I hope, future will not bring many surprises to me because of this condition and medications.
ReplyDeleteHydroxyurea may be unsafe for fetal life. Interferon/Pegasys is safe. Please talk to your doctor before trying to get pregnant. It could save you much heartache down the road.
DeleteHere is more info: https://ethrombo.blogspot.com/2019/03/et-and-pregnancy.html
DeleteDiagnosed with ET/CALR mutation Oct 2019, 860 platelet count which has been to 1.2M, pattern is on 500mg hydroxy platelets increase, double dose brings it down to 600. Mid 70's, experienced thinning hair, loss of energy, a stage 1 melanoma and several ketosis spots, heightened sensitivity to sun. Immediately went plant based diet, cut out alcohol and lost 10% of body weight, 5+ hrs vigorous excercise weekly, which hasn't impacted ET. I see two hematologists (seasonal moves) who don't seem terribly concerned. I count my blessings seeing patients in infusion rooms.
ReplyDelete