Hydroxycarbamide side effects.

[10061950]

I’ve just seen my haematologist today, and she has said that she will send me for a brain scan, and a camera for my stomach. Reasons I’ve had a few really bad headaches , and have been sick a few times. Is this normal? I am on Hidroxycarbamide 2 for 4 days and 3 for 3 days. also 1 clopidogrel a day.my bloods at the start was 1.000 and now are 217 .

[EPguy]

By Bloods I think you mean platelets (PLT) from the numbers you have. That is a large reduction and in the normal range. How long have you been taking HC? And did you try lower dosages before increasing it to your current dosing? If so did your new ailments start after the time of starting HC or after it was increased?

When I was on 2/day my PLT was reduced to 245 after about 4 months but I felt terrible. (headaches, stomach nausea etc) With just over 1HC/day my PLT is higher but I feel better if not great.

Your Dr likely has good reasons to order the tests. But you may also ask you Dr about reducing your dose as I asked mine, if you have not already tried lower dosing before.

[hunter5582]

Headaches and stomach issues are common adverse effects of hydroxycarbamide (hydroxyurea) .online.epocrates.com/drugs/...

The thing to understand about Hydroxy is that it is "a highly toxic drug with a low therapeutic index." There is no question that is is an effective cytoreductive agent. However, not everyone can tolerate it,

drugs.com/monograph/hydroxy...

Many people find, as ETguy suggests, that they can tolerate a lower dose. The good news is that you are well below the cytoreduction target recommended by many MPN Specialists for ET of 600K.

silvermpncenter.weill.corne...

While many people can benefit from Hydroxy and tolerate it, not everyone can. The good news is that if you cannot tolerate hydroxy, there are other options. PEGylated Interferon is the other first-line treatment option. There are also second line options like Jakavi and Anagrelide.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

]If you are not already consulting with a MPN Specialist, it is important to do so. Most hematologists lack the KSAs to provide optimal MPN treatment due to their rarity. Here is a list of MPN Specialists.

mpnforum.com/list-hem./

I hope you get this all sorted out ASAP. Please know that there are options and solutions.

All the best.

[10061950 in reply to hunter5582]

Thank you Hunter, I asked my dr if I could reduce my dosage, and she did by 1 tablet a week surely that won’t make a big difference. I have an appointment to see professor Tim (Somervaille ) at the Christie’s in Manchester next month. Thanks to you advising me a while ago. Hopefully he can explain things to me about my diagnosis/ situation I’m in. Ps my haematologist actually said yesterday that she hasn’t got all the answers when I was explaining how I’ve been recently.

[hunter5582 in reply to 10061950]

You are correct. Dropping by 1 cap will not make much difference. While you certainly should consult with your doc, you do not need permission to reduce your dose. That is your decision. I do not recall what symptoms you were having nor why your doc would want to have you take so much HU that it drops you platelets that low. Note that your platelets are not too low based on the normal range, just lower than they need to be to achieve a therapeutic benefit (reference the SilverMPN link above).

The question for your doc is why force the platelets this low when you are having significant known adverse effects of HU? What is the therapeutic value of having your platelets at 245 vs 445 or 545. What evidence is there in the literature that there is a concommit reduction in risk that justifies the additional toxicity of the higher dose of HU? These are core questions that any doctor managing your treatment should be able to answer.

I hope you get answers soon.

[10061950 in reply to hunter5582]

Hi Hunter, I tried to tell her that I thought I should have my tablets reduced and she really wasn’t budging on the amount. Luckily I am seeing the specialist at Christie’s in Manchester next month so 🤞he will advise me. Thanks again for your response .

[Ebot]

That seems a pretty high dose and a very long drop! Certainly my experience is that I was started on Hydroxy deliberately low and cautious. My platelets were in the 1700 range and I began on one a day. When my platelets plateaued around 600 after a few months I was upped to two on two days. They are now about 450 - I’ve been on Hydroxy for a few years. I’ve never had any problem with the meds. I’m up at Guy’s. You don’t say how long you’ve been on Hydroxy.

These do seem quite dramatic doses, drops and responses. Are you under the care of an MPN specialist? Have they tried reducing the dose to see if your symptoms improve? I’ve certainly had one brain scan ordered but that was because I’d had an ‘odd couple of hours’ when I’d felt out of it and the consultant insisted on an investigation when she found out (I was fine!).

Otherwise from anecdotes on this Forum the experience appears to be that being super cautious with the dosing of Hydroxy minimises the risks of side effects and alleviates them when they do occur. Wishing you well.

[10061950 in reply to Ebot]

Thank you for your response , I’m seeing a specialist next month so hopefully he will put me on the right path. Also just had phone call to say that the hospital has had a cancellation for tomorrow for my brain scan . I’m really scared 😟 but hopefully I will be okay.

[Solyesh]

God you have scheduled to speak with the MPN specialist. It would seem that the HU is definitely doing its job if it has dropped your platelets form 1.000 to 217..but the key metric should be how you are feeling. Since it seems to be working effectively hopefully they can cut back a little and perhaps that will help. I got up to 21 pills a week (3x day/every day) and unfortunately never saw such effectiveness.

[10061950 in reply to Solyesh]

Hi solyesh, sorry to hear that you haven’t had much luck with the tablets.do you have any side effects with taking them?

[Solyesh in reply to 10061950]

I actually switched to Pegasys about 5 months ago as I did have significant side effects on the HU and given that I was already at such a high dose and the results were OK (but nothing like your great results) - my MPN specialist agreed with me that we should try a different course.At first I had absolutely no issues on the HU (at 500mg/day) but as we kept increasing the dose I started experiencing shortness of breath; discoloration of my nails (turned almost completely black); severe hives (to the point I could not sleep at all due to the itching) on my arms and some thinning hair...in all honesty I could have dealt with the nails and hair if the medicine had been really working for me but the shortness of breath was negatively impacting my day-to-day and when the hives appeared (they were "only" there for about 2 weeks after we raised the dosage to 1,500mg/day) - I said we need to change...luckily all have reversed as I came off the HU (the nails are still growing out but almost back to normal).

Every medicine has potential drawbacks along with its benefits..the good news is that these days we have options and we should work with out MPN specialists to determine the best course for us individually (and yes it does take some trial and error to get to the right combination).

[10061950 in reply to Solyesh]

Hi solyesh, I’m going to ask if I can try something else,is Pegasy a tablet or injection? . I may not be able to though because I have only been on Hydroxycarbamide since August last year that’s when I was diagnosed with ET MPL.

My platelets at the start was 1.000 and now are 217 which I know is really good .but it’s the side effects that I find difficult.

[Solyesh in reply to 10061950]

Pegasys is an injection and usually is prescribed in doses from 45mg/week to 90 mg/week. At one of my first appointments with my MPN specialist after official diagnosis, I made it very clear that my goal would be to get everything to normal ranges but always having overall quality of life and how I was feeling as paramount. He agreed and said that target numbers are just that, targets but it is the underlying, in the case of ET, risk of thrombosis and progression that he was more concerned about. He also sated that it is not just the number of platelets but also how they act that was important - he would be fine with any number under 600 (would prefer an under 450) as long as the other risk factors were low/under control.

You are making the right move by going to see an MPN specialist. Most hematologists do not have the expertise to effectively deal with MPNs and it is understandable when they therefore rely solely, or for the most part, on clinical metrics like a target platelet count. Hopefully the expert at Christie's will help you get things sorted!

[10061950 in reply to Solyesh]

Hi Solyesh,I think I will ask my specialist at Christie’s next month if I can try Pegasus , I just can’t carry on feeling like this. Thanks again for your response.

[Solyesh in reply to 10061950]

Best of luck! Let us know how it goes!!

[10061950 in reply to Solyesh]

Thank you will do.

[Cja1956]

I agree with the others. That is a pretty high dosage and a big drop in platelets. I’ve been on hydroxyurea for years. Currently I take 2/day but my platelets stubbornly stay in the 700’s and 800’s. I’m very sensitive to the side effects of medications and I’d rather have quality of life than feeling awful due to the chemo pills. My doctor recently suggested increasing the dosage but I said no for now.

If I were you, I would first insist on decreasing your dosage and see how you feel. I would also try to get a second opinion from an mpn specialist. You need to be your own advocate. There are several ways to treat this disease. You need to find the one that works for you.

I wish you the best.

[10061950 in reply to Cja1956]

Thank you for your response, I’ve told my doctor I wanted to take less tablets, and she said I could drop 2 tablet which I think is absolutely mad. I am seeing a mpn specialist next month 🤞hopefully he will put me on the right path.

[EPguy]

Wishing you well on your tests.

I understand you have MPL ET. From:

nature.com/articles/s41408-...

<<Phenotypically, older age and lower hemoglobin levels have been remarked in MPL-mutated vs unmutated ET cohort>>

HC tends to reduce blood counts, so if you already had low Hgb it might be making that worse. Do you have blood count test results, (HCT, Hgb, WBC etc?) PLT is only one of the counts that we MPNs need to care about.

[Whitehair51]

I also was on 1500 HU a day for 4 months and had headaches, fatigue, nausea and hair loss. My platelets were down to 200,000 so I asked my doctor if I could reduce my dose. Over 6 months, I reduced my dose to 500 a day and I feel good, just some fatigue. My platelets are now at 310,000.

[10061950 in reply to Whitehair51]

Thanks for your response, I have been trying to get my tablets reduced but my dr has only reduced it by 1 . My platelets when I started was 1.000 that was August last year now they stand at 217 , but still she said only to drop by 1 . Luckily I am seeing a mpn specialist next month, hopefully 🙏 he will sort me out.