Hydroxy - reluctant to use

[Deece]

Hi All.

I was diagnosed with ET Jak2 positive 10 years ago. I have plc ranging generally anywhere between 590 to 630, with occasional climbs up to 750.

More recently I have been experiencing increased joint pain, pins and needles in extremities, cramp and generally feeling tired under the weather. Following a range of blood tests, which have all come back in normal range, my consultant has suggested I start using 500mg hydroxy daily to see if reducing plc helps the issues.

I was a bit taken aback, as it has never been a consideration previously and if I am honest I am anxious about taking this drug and the potential side effects, so reluctant to take. Have felt fortunate only using aspirin for so long. My consultant played down the side effects a little I feel. Any advice?

Thanks Deece

[Jelbea]

Hi Deece, I note your reluctance to take hydroxyurea. It often gets a bad write up. However, I have been taking it since my diagnosis of Jak2 positive in May 2021. I take 500 mg. daily and my platelets readily came under control and blood levels are all very satisfactory at present. I can truthfully say the only side effect I have is tiredness and indeed this may not be due to the HU. I am 80 yo and also have low back trouble with sciatica and restless legs syndrome and I am lucky to get four hours sleep each night.

I also have to take a blood thinner as I have had a DVT and three small clots in my lungs before I was diagnosed. As I understand it you are at much less risk of a blood clot if your platelets are at a nice low level.

I know some folk on the site here have had a bad reaction to HU but mine has been positive. This is good for me because I usually take every known side effect from any drug I have had to take in the past!!!

Good luck with your decision.

[Deece in reply to Jelbea]

Thanks Jelbea, its reassuring to know that your having some success with hydroxy, particularly if you are prone to side effects! I suppose we do home in on the negatives first. Maybe its worth giving a try to see if it brings some improvement.

Take care

Deece

[katiewalsh]

Hi. I was so afraid to take Hydroxyurea in the beginning that I refused my doctors recommendation. Finally I got over my fear and got on it. That was in 2014 & I’ve been on it ever since. The only problem I’ve ever had were a few mouth sores. But I discovered if I drink liquid immediately before the pill, so my mouth was already moist, then quickly took the pill(s) & had more liquid, I didn’t get mouth sores. When I did have the sores a mouth rinse of salt and baking powder (or soda?) healed them right up. I literally have my pills in the cap of the jar before I drink the liquid. That way there’s no lag between the moistened mouth and the pill. And if for some reason you have any problems with it you can talk to your doc about trying something else. They usually start wit Hydroxyurea because it’s so well tolerated. Katie

[Deece in reply to katiewalsh]

HI Katie, thanks for your reply. This is really helpful advice, thankyou. 😊

[Mirror368 in reply to katiewalsh]

Many thanks for the moist mouth advice.

[Mirror368 in reply to katiewalsh]

I have been following your advice and it works, I swish it around my mouth before swallowing. I never even touch the HU capsule. I slide it out of the bottle onto another small lid so have ready right away, Also, make sure I drink minimum 64 ounces of fluid. daily, Thanks again for the great advice, Eileen

[katiewalsh in reply to Mirror368]

I’m glad it’s helped you. Katie

[Aldebaran25]

Hi Deece, I was also very hesitant to start with HU (500 mg) . That was eighteen months ago and HU has been good to me, only minor side effects (and not sure if due to HU) and a positive impact on my blood counts. After a few months the quality of my sleep improved after years of difficult nights. My routine is to take the capsule after dinner, with a large glass of water and then wash my hands immediately. Incidentally, recently I started with Pegasys and am transitioning from HU. I took this decision as my allele burden is very high and Peg is considered one of the best at improving this. n.b. the clinical nurse confirmed to me that HU is generally very well tolerated , don't be too anxious.

[Deece in reply to Aldebaran25]

Thankyou, this is very reassuring 😊

[catkinspolymer]

Hi Deece , I have been taking HU since 1996 and I live a normal life. It does make you a bit sensitive to sunlight. Now 77 and still moderately fit. It controls my platelets very well but do need venesections about every 3 months to reduce Packed cell volume. I have several accounts here if you look them up.

all the best Town Cryer.

[Deece in reply to catkinspolymer]

Thankyou, I will certainly take a look. Good to hear about long term use and its effects.

[ainslie]

most experts would not necessarily treat platelets at those levels unless you have other risk factors, most don’t treat unless over 1 million, I suppose you could try the meds and if it doesn’t sort your symptoms you may decide you don’t benefit and could stop

[Deece in reply to ainslie]

HI, yes this is my concern. My levels have crept up a little, but have been fairly stable over the years, so think that's what freaked me out! Your right, I suppose I could try them to see if they help symptoms and then stop if it's not helping. Thanks for your advice

[ainslie in reply to Deece]

most people with MPN will find their counts will creep up over time but no reason for alarm as long as not dangerously high

[Hopetohelp]

There are other options as well. I am on Pegasys and get on very well with it. Your consultant should have talked through all the choices you have. Might be worth looking into

[Deece in reply to Hopetohelp]

Thanks, I will add it to the list of questions for my next visit!

[Auggie17]

Hi Deece- I have been on Hydrea since January 2020. My platelets have never been above 680 before taking it but because of my age (68) my hematologist recommends it. I really have no bad symptoms, maybe just less energy. I have considered taking PEG but my doctor said the side effects are way worse. I have ET Jak2 as well and my platelets are now 340 with the Hydrea. Hope that helps!

[Deece in reply to Auggie17]

Thanks Auggie, yes that's super helpful, good to know that your not having side effects.

[Meatloaf9]

Hi, I am not a hematologist so I can only give my experience. I am now 73 PV, been on HU for about 18 months (9 caps / week). So far I have had zero problems with the drug and my blood counts are all within range, so far. Both of my hematologists keep insisting that HU is a good drug. My mpn specialist said that if I were his father he would still have me on HU. I would try besremi if I could afford it but in the US it is very expensive, at least for me. Just my experience, we are all different, this is not advice, just my experience. Best to you always.

[Deece in reply to Meatloaf9]

Hi, great to hear that you have no issues with HU, this is very reassuring. Thankyou so much for your advice and best wishes.

take care Deece

[Phantasia]

All you can do is try it and see. Unfortunately I ended up with peripheral neuropathy in my lower legs and feet so my haematologist took me off it. I only took it for 7 months. 8 months later I still have PN although it seems to be very slowly improving.

My reaction was a rare adverse side effect and most tolerate HU quite well.

Currently I am only on daily aspirin and have no intention of using HU again. I am JAK2 negative and asymptomatic though.

I note you are JAK2 positive and are experiencing symptoms so medication other than aspirin is probably warranted especially if you're over 60

Ultimately it has to be your decision.

Wishing you all the best.

[Deece in reply to Phantasia]

Hi Phantasia, thanks so much for responding. Sorry to hear that HU didnt work for you and caused you further problems - hope this improves fully for you. I'm not quite 60 yet, so was just hoping to last out a bit longer before having to take any further medication., particularly with my plc being reasonably static.

Take care, Deece

[PVmom_79]

You are so lucky to have only needed aspirin for so long. I took Hydrea for over three years. I think it's fine to use, just start slower than one a day and take it at night to reduce side effects.

[Mirror368]

Hi Deece,

I was looking back at comments on Hydroxyurea. I was wondering if you decided to try HU and your experience with it.

I am 78 and was diagnosed in June 2022 with ET JAK2. My platelets had been rising for several years. When I reached 621 then I was referred to a hematologist. When I saw her my platelets had jumped to 735. I had extensive labs and bone marrow biopsy. She put me on 500 mg HU every day. I started getting daily headaches so she took me off it for a month. I started back on it taking 500 mg every other day. I just saw her yesterday….my platelets are now 434 so I can continue every other day.

Good luck with your journey, Eileen

[Deece in reply to Mirror368]

Hi Eileen, happy new year. Reluctantly I started the hydroxy and for the first few weeks I didn't feel great, with lots of headaches. However, these reduced and subsequently stopped thankfully. When I returned to the hospital my platelets were down to 450 and not much reduction in any other levels. The following month platelets down just a little bit more to 420 and other levels sustained. To be fair, I have been feeling much better than I have in a long time. I have agreed with consultant to continue for another two months to see how I get on.

Hope all goes well with you.

Denise 😊

[Mirror368 in reply to Deece]

Hi Denise, Glad to hear your platelets are so low. What dosage of Hydroxyurea are you taking? My hematologist said my goal was to maintain 450 or below so I am encouraged. Eileen

[Deece in reply to Mirror368]

I'm on 500mg daily