Prescription changed?

[Angelinagaffer]

Has anyone on hydroxy carbamide ever had their prescription abruptly halved?My consultant of ten years left and has been replaced by a locum.

I had a telephone conversation consultation , it went ok

I received a letter which said I was on a high dosage and was only to take 500mg daily and I had a agreed to an alternative? I hadn't agreed to anything. I don't understand why she would do that when I am so well.

Surely abruptly halving a toxic medicine is dangerous.

Anyone experienced anything similar?

[hunter5582]

It sounds like there are a number of issues to address.

Unclear communication with the locum hematologist. You would need a clear understanding of the reason for the dose reduction and consent to it. If an alternative is referenced, what is it? Do you agree?

You are correct that hydroxyurea is a toxic medication. Reducing the medication would reduce the potential toxicity and potential adverse effects. The doctor may have concerns about the inherent risks of long-term use of hydroxycarbamide. If so, this should have been a very specific conversation about the risks. The doctor would also have been considering any adverse effects you have experienced

Reducing the dose would also reduce the degree of cytoreduction. This may or may not be an issue for you. There is no particular benefit to making the platelets < 450 in terms of thrombosis risk for people with thrombocytosis. Goals need to be individualized. There certainly is a benefit to reaching the goal for HCT if you have PV. A discussion about what your goal should be would also be a part of the decision regarding dosing.

Dropping the dose from 1000mg to 500mg/day would likely result in a gradual increase in blood cell numbers and possibly a reduction in any adverse effects you may have experienced. When I dropped from 500mg/day to 500mg every other day, I did not experience any change any change in the adverse effects. The toxicity continued until several months after I completely discontinued. The blood cell numbers did increase back to baseline in several months as well. Note that is how I reacted. your reaction may be different.

For what it is worth, I did much better on Pegasys. It was both more effective and easier for me to tolerate. That does not predict how you would respond however. If you are satisfied with your response to hydroxycarbamide (benefits/tolerance), then there is no apparent reason to change your treatment plan. Any change would definitely need to be part of a plan that you agreed to.

Suggest a call back to the doctor is in order. You require clarity before moving forward with a change to your treatment plan.

[Angelinagaffer in reply to hunter5582]

Thank you HunterI have written to the haematology team

Hopefully I will get a reply soon.

From the replies I've received it seems quite common that medication is altered with a New consultant. Interesting 🤔

[Wyebird]

Wow if you were on 2 tablets a day I don’t consider it high. A letter without consultation seems abrupt. Maybe your blood shows the need to do it. How long before your next appointment?

I hope you can get answers soon

[Angelinagaffer in reply to Wyebird]

Thank you Wyebird, My thoughts exactly I didn't think it a high dosage either.

I've written to the haematology team, hopefully get a reply soon.

My next appointment is March so not too long.

[Bridie123]

Have them double check it's you. Where I go there is another lady with exactly the same name and similar age,!

[Angelinagaffer in reply to Bridie123]

Thanks Bridie, I put that in my letter

Hopefully I won't wait long

[RazB]

I’m on a much higher dose of Hydroxy and it’s never been halved (sadly!). Def bottom this out with call to your haematology team. X

[Angelinagaffer in reply to RazB]

Thanks Raz,I didn't think I was on a high dose

I've written to the haematology team

[Longy1]

Hi - I'm 6 months into diagnosis - started on 1000mg daily and weekly phlebotomy but developed mouth ulcers - reduced to 500mg and mouth ulcers stopped and had one phlebotomy since with no adverse effects

[Angelinagaffer in reply to Longy1]

Thanks Longy how are you doing? Keep a tube of bongella for those mouth ulcers, I find they come and go as they please, strange little things 🤔

[DougyW]

As you are in the UK I assume you gave a McMillan support nurse. I'd call them and ask for advice/ follow up with a different Haemotologist. Best of luck

[Angelinagaffer in reply to DougyW]

Thanks DougyI've written the haematology team.

[saltmarsh]

I agree with all the comments posted here. Important that you clarify all the issues raised.

I changed doctors 18 months ago when I was taking 1000mg/day HU for PV. My new doctor stopped all the phlebotomies and decreased my dosage to 500mg/1000mg every other day - not quite in half. Blood numbers have been stable and all remain in the acceptable range. I also take a supplemental iron pill every other day. This has worked for me.

My own experience is that many doctors tend to overprescribe. My current doctor is very much of the opinion that drug prescriptions need to be tailored to the individual and, as has often been stated in this forum, this disease manifests itself in a myriad of ways.

Good luck moving forward. You are absolutely correct to question this.

[Angelinagaffer in reply to saltmarsh]

Thank you Saltmarsh,I have written to the haematology team hopefully I will get a reply soon

[Scottishterrier]

I had mine cut from one a day and two at weekend to one on a Monday I think consultants do this when they have your platelets at a steady level and over period of time it stays the same but I have a GP practice that every time I ask for repeat prescription of hu i only get four tabletsStay safe

Scottish terrier

[Angelinagaffer in reply to Scottishterrier]

Thanks Scottish terrier, I have written a letter to the haematology team.

What are they like? Thankfully

I get my tablets from the hospital , I usually get 6months supply.

Would it be easier for you to get prescription from the hospital

[PifflyGibbon]

My new consultant prescribed Hydroxycarbamide at half my previous dose without first discussing a reduction. I asked the hospital pharmacist to phone and check the dosage with her and he was assured it was correct. It later transpired she’d misread my medication notes and a new prescription for the higher dosage was issued. Mistakes are easily made when your case is passed to a new clinician.

[Angelinagaffer in reply to PifflyGibbon]

Thank you PifflyGibbonI have written a letter to the haematology team

[BloodZero]

No. I havnt.

[JustKeepSw1mming]

I hadine dropped from a 1000 to 500, as my platelets reduced and I had side effects. However, my hematologist discussed it with me. I was happy to have less of it in my body.

Unfortunately, the platelets have now gone up on the lower dose.

Good luck and hope things get clarified and sorted for you.

[Angelinagaffer in reply to JustKeepSw1mming]

Thank you JustKeepSw1mmingI have written a letter to the haematology team.

That is my worry too that all the good work on a 1000g is wasted by going to 500 when it clearly didn't work in the first time around🥴

[JustKeepSw1mming in reply to Angelinagaffer]

Hope the will figire it out and keep you involved in the decisions.

Take care

[Scottishterrier]

I have but it was not my consultant fault I used to get them from my hospital pharmacist but consultant said you know that your GP can prescribe them so now I get them from them I am on one a week so all I get prescribed four tables every time I request so I have to request them every two weeks to make sure don't run out I see consultant in April so will tell her about the problem I am havingStay safe

Scottish terrier

[Angelinagaffer in reply to Scottishterrier]

Ask the consultant if you can have 2months extra. My last consultant gave me 2months extra just in case he had to put dosage up. I have over the years found that re -assuring and it came in very handy during the pandemic when my platelets went biserk.You would think the GP would give you 2months prescription. What happens if you drop one down the sink😲 I've done that before and dropped on floor then stood on it🤭

Good luck

Best Wishes 🙏