Alternative medication

[Heather270240]

I recently wrote about the side effects I am having to Hydroxycarbamide and had numerous replies stating they were experiencing the same symptoms fatigue nauseous breathlessness to name a few. I have just returned from my appointment with my haemotologist and once more told her about the side effects which once more she had never come across before. However she has offered me Anagrelide. Before I accept the change can anyone tell me how they have found this drug and whether they have any side effects. I must add that I also take Prednisone 6 mg a day.

[francesb]

If you google anagrelide side effects you will find all the info plus there's a section on MPN Voice website re treatments that has info that might help you decide. I'm afraid every drug in the world has side effects though.

[Heather270240 in reply to francesb]

Hi francesb. Yes I have googled and was given a handout by the nurse.

[stillkicking]

Hi Heather,

I'm wondering if my own hematologist has been cloned, as yours seems like an identical copy! Maybe they trained together!

Whilst HU has slowly brought my platelets to something nearer to the "normal" range, I really struggle with fatigue, mouth ulcers and other annoying symptoms that I am convinced are HU related. I do take some other medications too though, and I always keep in mind that the individual mixture of medications that we get given are probably rarely tested in combination.

You mentioned prednisone, and I was interested to see the vast range of possible side effects that were listed when I looked it up (among the 1001 things listed were breathlessness and fatigue!)

Not sure if you were taking prednisone at the same time as the hydroxyurea, but did wonder what Pr + HU would do in combination? Probably no one has tested it!

Anagrelide has been mentioned to me too by my haematologist. I am a bit reluctant to move to it at this point, but may well have to in the future if HU side effects get worse.

I know that there are some on the forum that do take Anagrelide, and it would be good to hear from them.

All the Best,

Peter

[Heather270240 in reply to stillkicking]

Hi Peter. Thank you for your reply. I am in Kent. As regards Prednisone I have been taking it for 8 years and presented no side effects however Haemo is convinced it's the Pred that's causing the problem. I don't believe her statement when she said none of her patients have had my symptoms and she certainly didn't like it when I told her. She asked whether I wanted to change consultants then offered me the alternative which I have since found out has a severe interaction with Prednisone. Looks as though we are stuck and hope things improve.

[Tico in reply to Heather270240]

Hi Heather270240, I think francesb and peter have hit the nail on the head regarding side effects of all drugs & in particular a combination of drugs together. Only you can make the choice whether to swap from one drug to another. The only thing i would ask myself are my symptoms due to my condition or the hxdrea itself? I remember being in a permanent battle with haemo to come off hydrea but looking back then and now i'm more convinced its the condition as i've been on varying doses of hydrea for around 11yrs sometimes very high doses (5/ 7days a week!) and still experience bone pain and the usual fatigue when i've been on lower doses. So who knows? Like i said only you can make that decision. Atb,tina.🤗

[JackLina]

Just one comment here...You described two of the same symptoms I suffered when on hydroxy. The rest of the list was horrendous and I still don't have full use of my hands back. I am on Pegasys following my refusal to take any more hydroxy because I was convinced it was poisoning me. It has been very successful even with the side-effects. Hope you find the right one for you.

ATB. P

[AndyT]

Have you asked about Pegasys as another alternative? I’ve been on it for 3 years for ET and have found it very effective and easy to tolerate with minimal side effects.

[Heather270240 in reply to AndyT]

Hi Andy. Thank you for your reply. I don't know where you live but my Health Authority won't fund Pegasys.

[AndyT in reply to Heather270240]

That’s a shame - I’m in Leicester. Have you considered getting a referral to an area where they will fund Pegasys?