Hydroxy effectiveness

[Oscarsboy]

Hi everyone, I was hoping I would never have to write and ask this question. Have been on Hydroxy since August, 9 tablets a week and have been fine, felt fine, no real side effects up until about two weeks ago. All my pre medication symptoms are now back. Headaches, tingling, pins and needles, etc etc, Has anyone else experienced this? Do we know if this means it has stopped being effective? I do not have a blood test due until later in the month, and all contacts at hospital still off until Tuesday earliest. This is giving me huge anxiety now as I am beginning to think I am back to square one and going to have to start from scratch once again. I will contact the haemo nurse with all the info by Tuesday but wondered whether anyone out there can offer any comments/advice. Many thanks.

[hunter5582]

It is difficult to tell exactly what is gong on in what you describe. What is a return to symptom vs what is a potential side effect from the hydroxyurea. Headaches can result either from the ET or from the HU. The tingling/pins & needles is one of the common ET symptoms. All of what you are describing are all potential microvascular issues associated with ET.

I would not look at this as being back to square one. All of the MPNs are emerging disorders that change over time. Your response to HU or any other treatment option can also change over time. HU is a medication that is known to have specific issues associated with long-term use. It may well be that you simply need a change in treatment plan to address the current situation. This is simply one of the things we all deal with in managing MPNs.

I just recently re-watched this presentation that you may find helpful.

youtube.com/watch?v=CGuRhJK...(Not working as expected?)

Bear in mind what Thomas Edison said about the lightbulb. "I did not fail. I discovered 10,000 ways that did not work." If it turns out that HU is not going to be viable for you, there are other options. It is just a matter of finding the right treatment option for your presentation of ET. It can certainly be done.

By all means follow up with your care team. This is one of the times where specific consultation with a MPN Specialist is so helpful. Please be confident that you will get this sorted out.

All the best.

[Oscarsboy in reply to hunter5582]

Thank you Hunter. I have listened to the whole of the video. ( I cannot pretend I understand all of it!) but have certainly learned from it. I had a one off consultation with Professor Harrison at Guy's a couple of months back when all was running well, but one of her mentor consultants who put me forward for this is at the hospital I am under, so am hopeful that via the Specialist Nurse, it will refer back to him for guidance. Thank you for your reassurance. When you are feeling rough and low it is sometimes difficult to see the positives. You always help us to see a light at the end of the tunnel.

[Trocken]

Everything you describe as return symptoms are also symptoms of a B12 deficency, have you had a full blood count done recently? I would be contacting your GP and ask that your vitamin levels be checked. We have to be mindful that not all our symptoms are related to our MPN as we run the risk of missing other underlying problems. I hope your feeling better very soon xx

[Oscarsboy in reply to Trocken]

Hi Trocken, I have a full count due to be done at the hospital on 14th January, so thank you for that . I presume the B12 will be checked in the full count. Thank you so much for your reply.

[Mostew in reply to Oscarsboy]

I would ask if b12 is included in blood tests. I've learnt NOT to assume anything !!!

[Oscarsboy in reply to Mostew]

Thank you I will check it out.

[Jennytheb]

Hi Oscarsboy, hunter5582 has some very helpful posts and always worth a look. However, I really think you need to contact your medical team and hopefully they will come up with some good help for you. If not I would go back again. I feel we cannot manage this ourselves. Wishing you well.

[Oscarsboy in reply to Jennytheb]

Thank you. x

[Ebot]

Hi there. It can take a while to establish the most effective dose of Hydroxy and since you’ve only been on it since August it’s still relatively early days. It’ll be interesting to see what your bloods are doing and how this might correlate with the symptoms you are experiencing. I certainly wouldn’t despair! I recall it taking quite a few months of adjusting my dose of Hydroxy to stabilise my bloods. And nothing is ever written in stone when it comes to MPNs! Let us know how you get on.

[Oscarsboy in reply to Ebot]

Thank you. I will update after next full count to see where we are.

[catkinspolymer]

I have been taking HU for 25 years and no significant side effects except a dry skin and some sensitivity to sunlight , for me it works,

yours Town crier

[Oscarsboy in reply to catkinspolymer]

That's great to know. It may just need some readjustment. My main concern is that it may have ceased working as have been absolutely fine up until about 2 weeks ago when all the symptoms I had before I started hydroxy have come back.

[CraftySpider in reply to catkinspolymer]

Hi Catkinspolymer…your comment is reassuring to me too…I have been taking HU for MF for 18 years and now starting to get some stomach issues, ..so wondering whether I had been on it for too long ! ( I also have EDS so that can cause similar symptoms.)

[dancingfiend]

I am 71 yr old female, prescribed Hydroxycarbamide in trial doses since June 2021. Rest assured that the drug will continue to be effective. I suppose it is possible that the haematologist may want to adjust the dose slightly when you have hospital contact tomorrow. Unfortunately, however, the condition (mine is ET + JAK 2) creates intermittent symptoms. Imagine you have already phoned 111 to talk those over. There is nothing worse than lying awake at night in terror. I know!

[Oscarsboy in reply to dancingfiend]

Hi dancingfiend. I am 73 female and also ET+JAK2. I should have put that in the heading shouldn't I!! Thank you for the helpful info that it can create intermittent symptoms. I have'nt phoned 111 as I have an email ready to send to the specialist nurse team who should be back tomorrow ( I hope)!! If I do not get a response within the next two days I will telephone and leave a message. Anxiety doesn't help either does it!

[Cakeface]

Hi, I recently saw my consultant re my symptoms and he felt that it is probably side effects from the HU but is ruling out other possibilities before changing the meds as my HCT was raised because the clinic nurse had reduced HU to see if it helped my very low ferritin! My b12 and other bloods he checked were all normal. I'm currently waiting for a ultrasound. I've been on HU 4 1/2 years. I've never been free of all the symptoms of PV that I had pre medication but it has kept my HCT and platelets stable.Hope you get sorted soon

[Oscarsboy in reply to Cakeface]

Thank you for your reply. Good to see the positivies.

[Wyebird]

Hi, I started on 14 tablets a week at the start of diagnosis. When my platelets dropped the meds were reduced to 12. I felt much better with normal platelets level. At every appointment I could tell if my platelets went up. All my symptoms would return. Feeling sluggish and lethargic. Yes, anxiety and depression would kick in. More so when meds were increased.Maybe you are similar. Only the medics can confirm this.

Can you email your nurse or advise? Maybe she will request your GP to give you a blood test or an earlier appointment.

Good luck and happy new year.

PS- I can only talk about ET. If that’s your MPN fear not in my eyes 9 tablets is a low dose.

[Oscarsboy in reply to Wyebird]

Thank you Wyebird that's reassuring. Yes I can email her and have one ready to send today as they do not work Weekends and Bank Holidays so hopefully it will get picked up in the next couple of days. Happy New Year to you too. Yes the MPN is ET. Sorry I should have added that in the title!! (Brain fog)!!

[Wyebird]

How I love ‘brain fog’ I now have an excuse for being dipsy and forgetful. Something I’ve always suffered from 🤣

[Oscarsboy in reply to Wyebird]

🤣

[Cja1956]

Hi, Oscarsboy, I’ve been on hydroxyurea on and off since 2008. I was originally diagnosed with Et jak 2, but I progressed to MF a few years ago. Currently, I take 2 hydroxyurea/day. I don’t know what your numbers are but it seems that 9 pills a week is a pretty low dosage. Maybe your doctor needs to increase it.

I hope you get everything worked out soon.

[Oscarsboy in reply to Cja1956]

Thank you. I have emailed this morning in the hope that when they re open tomorrow it may get looked at.

[Annula]

Hi Oscarsboy - try not to panic! Have you added any other meds to the Hydroxy as it may be that causing increase in platelets. -as the hydroxy may not be absorbed in your system as effectively. Take a look at the bigger picture & it's a good idea to speak to your Specialist nurse - but keep an open mind. It's unlikely the Hydroxy alone is less effective. Good luck -keep me posted & Happy New Year.

[Oscarsboy in reply to Annula]

Thank you , will do. I have not added any other meds since starting.

[DnH211252]

Be very surprised if hydroxi hasn't been effective, I have been on it for 8 years, it works I was diagnosed first at a platelet level of 1750, hydroxi brought it down rapidly it is the first choice.Pretty sure it will do the business.

All the best

Dave

[Oscarsboy in reply to DnH211252]

Thank you. Slight improvement today as have also upped my aspirin to two instead of one a day. I had been told to increase it should I feel it necessary so took the bull by the horns and did so. Maybe this will help too.

[Plavers]

Hi Oscarsboy, sorry to hear about your symptoms. I just wonder as this has all happened in the last two weeks whether, because of the season, there has been a big change in your diet or liquid intake? Maybe you could look at that and make a list of any changes ready to have for your doctor. I’m 71 with ET Jak 2

[Oscarsboy in reply to Plavers]

Hi Plavers, I think it is probably not so much change in diet and liquid intake, it is more the amount I have been doing over the last few weeks. I have been exceptionally busy over the Christmas period with grandchildren staying etc and a much larger workload, with very little rest so may have pushed myself a bit beyond the limit!! One day I will learn eh!!🙄

[EPguy]

I needed at least 6 months to get to know HU. Currently I'm taking close to your dose. When I get the tingling etc, it's usually a sign to take the double pill that day. But I don't get the headaches on that schedule.

[Oscarsboy in reply to EPguy]

Headaches still on and off during the day, but thankfully not as bad as yesterday so hoping the raised aspirin to two per day may now also help. Thank you for your reply.

[Ladygolf]

I doubt that you have become resistant to HU after only 6 months but I guess it is possible. I was on HU for 12 years taking 14-21 per day and slowly my platelets started creeping up while other counts were decreasing. Specialist switched me to Anagrelide and it worked well for two years but the side effects were frightening and I had poor QOL. My specialist thought the two year break might be enough to make HU start working again so I went on 14 per week for the last year. For 6 months it was working but then then I could see my numbers going in the wrong direction again. I have an appt. with specialist on the 12th and don’t know what he will suggest. I am 68 and platelets at one million. Peginterferon is a lengthy process to get approved for government funding where I live in Ontario, Canada but I may have to go back to the horrid Anagrelide until I can get approved for Peg because a million is too hig at my age. Unfortunate part is I feel great right now. I am triple negative.

[Oscarsboy in reply to Ladygolf]

Thank you for all your information. What a tricky situation it is having to juggle things around and tring to find what suits when other things either stop working or make you feel gross. Let's hope they will review peg for you.