Change of treatment!

[Cokopops]

Hello again. Last time I wrote, I was about to start hydroxy. Started with 500mg a day, Monday to Friday for 4 weeks and then every day. To start with I didn’t have too many side effects but after 7 weeks things got worse. Not only the hot flushes increased drastically, I had mouth ulcers, itchy scalp, pains in my legs, nausea and the worse part, I could not sleep! My GP gave me zopiclone but even with those I could only sleep for a couple of hours. I felt very unwell. So the haematologist said to stop taking them and wait a few weeks to see if symptoms would go away. They did, except for hot flushes. My GP agreed with haematologist to put me back on HRT that I had stopped a year ago. This made a big difference., still get hot but nothing like before.

This morning I had an appointment with haematologist. The platelets are going up again, 667. He would like to try another treatment called anagrelide but before I need to have my heart tested. Or he said I could try interferon. I asked about ruxolitinib but I was told that this drug is not licensed in the UK.

My question is, has anyone had adverse symptoms with anagrelide or interferon? And what were they.?

I apologise for the long post but would appreciate your thoughts

Thank you for being there xxx

[hunter5582]

Like you I was unable to tolerate HU due to its toxicity. I am now using PEGylated Interferon to treat my PV (with thrombocytosis). PEG-IFN is the other first-line treatment consideration for ET. mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

All of the medications used to treat MPNs come with a risk/benefit profile. We all respond differently to each of these medications. Many of us tolerate PEG-IFN better than HU, but not all do. For some it is precisely the opposite. Others tolerate anagrelide better, though it is considered a second-line treatment due to its side effect [profile.

I am tolerating PEG-IFN well so far. I have been taking 45mcg/week for about 7 weeks now. It is controlling platelets and HCT and no adverse effects. It certainly is an option worth trying.

Hope things go well for you with your next stage of your MPN journey.

[Cokopops in reply to hunter5582]

Thank you for replying Hunter and your good wishes. Keep well

[skipperL]

I am in the UK and have been on Ruxolitinib for two years - under a central London hospital- so it is definitely licenced here. SkipperL

[Cokopops in reply to skipperL]

Why would my haematologist say it’s not licensed? I thought the tone of his voice was different when he said quickly “ not licensed here”! Thank you for your reply and keep well

[skipperL in reply to Cokopops]

I would imagine because it is so expensive! SkipperL

[Wyebird]

Hi I went onto anagrelide 1 a day whilst Bering weaned of hydroxi. This wa in the hope my heamoglobin would go up. All ok so increased to 2 a day things started happening I was light headed. I had to go back down to one a day along with bydroxi. All good then platelets started to rise so went up to 10 anagrelide plus hydroxi. Platelets good but felt spaced out so dropped one anagrelide and increase one hydroci. This made a huge difference. All was good for about 2 years. Only last week interferon was introduced. I’ve had two jabs now. So I’ve been taken of anagrelide and hydroxi reduced.

If you’ve been offered interferon I’d take the chance. Good luck

[Cokopops in reply to Wyebird]

Thank you for your reply. Have a nice week end and stay safe!

[Hopetohelp]

All good on Pegysus.

[Cokopops in reply to Hopetohelp]

👍

[katerogers1]

Ruxolitinib is licenced in the UK- I have been taking it for years!

[piggie50]

I could be wrong, but I thought I read somewhere that it is only available to those with MF?

[Wyebird in reply to piggie50]

I thought that too.

[Ratton726]

I had to take Anagrelide as an alternative to Hydroxy(affected me- severe skin allergy)!Have been on Anag 2 years ? Seem to be okay on them. (I also take aspirin).Have E. T-

platelets have dropped - told bloods normal (319 platelets count) in June!

We are all different- Good Luck

[Arknj]

My husband was diagnosed with primary myelofibrosis with mpl mutation in May 2019. He was immediately put on ruxolitinib and it was a wonder drug for him. It stopped the itching, reduced his spleen size and helped raise his red blood cells , which in turn helped with his fatigue. He had an unrelated stem cell transplant in January 2020 and is doing really well. He was given 18 months to 2 years to live at diagnosis ,so for him, it was the right decision. We are in Scotland.I know for some people, it doesn't work so well or they can't cope with the side effects. My husband had no unwanted side effects at all. It's definately licensed in the UK and has been for many years.

[JaK2ET]

I am in the early stages of treatment with PEG-Interferon (only three injections so far) and already experiencing significant problems relating to violent/loose bowel movements ...