Hydroxycarbamide

[indy22]

Been on Hydroxycarbamide for a few months I feel terrible, sore heads, mouth ulcers, fatigue ! When I have mentioned this to my consultant they don't seem to care I said I want to try rux but they say I should only be put on rux if my spleen is enlarged! I have stage one MF.

[Lucycourt]

poor you - alas age important to medics - I no longer see doc - hospital appointments all on telephone with nurse ! Same with GP . I am over 80 so seen as pointless patient .

[Inca in reply to Lucycourt]

You should be treated with great care & respect,shocked to read your post.

Can you not change Doctor & hospital.I hope you can get better care soon.

[Jennytheb in reply to Lucycourt]

Sorry to hear about your real lack of care, this is very wrong. Had you seen a MPN specialist?

[ciye in reply to Lucycourt]

That's disgusting, but not surprising, I phone surgery only to be told to do econsult, which told me to speak to gp. I did at least get to see nurse who have me antibiotics and told me if I get worse to go to a&e as they can do tests !!!! No wonder a&e are slammed..

[Mostew]

Are you seeing an MPN Specialist? If not you are entitled to . Dr. Should organise it .Do hope you get better care.

It's hard while feeling awful to push for it but worth it ,

[hunter5582]

It sounds like you may be hydroxyurea-intolerant. Your care team most certainly should care about your response to treatment. You correctly identify that ruxolitinib or one of the other JAK-inhibitors would likely be in your best interests to treat MF. Mostew makes a good suggestion in seeking a consult with a MPN Specialist. Perhaps switching to a MPN Specialist/team would be even better. Just in case you have not seen it, here is a list.

mpnforum.com/list-hem./

[Inca]

I was changed to Rux 4 yrs ago after Hydrea didn’t help me at all.I am 82 now dignosed with P V when I was 69, I have great care from my G P to my consultant & cardiologists at the hospital where I am checked regularly.,blood tested every 2 months by my nurse who comes to the house,& all are in touch with each other re my results.Not considered unimportant ‘cos of my age.I am English ,live & treated in S W France.

[Georgehb]

Hi Indy,

I have been on hydroxycarbamide for almost 7 years and have had all sorts of problems with it. Drs just dismiss my queries, saying it's well tolerated. I tried to get them to refer me, without any joy, so paying for a private consultation to get a second opinion.

[ciye in reply to Georgehb]

That is so wrong you are entitled to a second opinion and should not have had to pay. I asked gp who said no as professor Harrison not in our area, asked Haemotology for a referral for professor Harrison and it was done no problem, they organised bmb and spleen scan which guys like to have.

[Georgehb in reply to ciye]

Hi, thank you for your reply. Could you give me any advice about bmb please ie, recovery time, infection, can you carry on as normal etc?

[ciye in reply to Georgehb]

I went home after mine I had light sedation and gas and air. I had some soreness for a couple of days but nothing more.

[indy22 in reply to Georgehb]

I have had 2 BMB a bit uncomfortable but bearable xx

[Exeter21 in reply to Georgehb]

you don’t have to pay. If you email Professor. Harrison at Guys Secretary they will get back to you if you inform them you are unable to get a Drs referral. Your own Dr is obliged to send the email regarding your reactions to your current drug. I asked at mine 3 times & eventually pushed that I would complain if they did not react to my healthy care plan I required. 👍

[Georgehb in reply to Exeter21]

Hi,

Thank you for your reply. My dr wouldn't refer me to Dr Harrison, but that's great advice thank you. I am seeing mine on Thursday this week.

George

[Exeter21 in reply to Georgehb]

George they are being pathetic over these referrals I did it myself & then my Dr sent a letter just stating I would like advice on my medication I was not coping with . Once she had rang me & written to Haemotology they were glad of her experience . They put me on weekly interferon which I didn’t cope with after Hydroxy . I believe it was too strong weekly . Dr Harrison agreed & moved to monthly . She is actually more concerned for people’s lifestyle on medicines not just fast reduction of platelets that I feel Haemotology are who have to cope with many different blood diseases.

Professor Harrison specialised in MPN treatment & she was so brilliant to talk to . Don’t struggle on medicines that don’t suit your body we are all different & you have choices . Julia 👍

[Georgehb in reply to Exeter21]

Hi,

That's really good advice thank you and I totally agree that all some haematologists want to see is a reduction in platelets etc. Mine definitely does. At one time my iron levels were through the roof and all they did was increase my medication, but it turned out it was because I had started eating cereal which unbeknown to me is fortified with iron as well as other vitamins. As soon as I stopped eating cereal every morning my iron levels drop to within the normal range.

George

[Exeter21 in reply to Georgehb]

it’s a minefield George I think we know best on our bodies keep going &wewill get there my liver readings up on interferon from normal on just 4 injections will wait & see if normal now off it 6 weeks 🙈 Julia 👍

[Exeter21 in reply to Georgehb]

the good thing is this website so much info from everyone on meds 🤩

[Georgehb in reply to Exeter21]

Hi Julia, it's a great site and so good that we can share experiences.

George

[Pookie24 in reply to Exeter21]

My other half has just been diagnosed with PV and he is refusing (until he has, quite rightly, explored other options) to take hydroxycarbamide. He is very wary of it as it is a chemo drug - and he is also wary of the pharmaceutical companies that make these drugs. However, he is worrying me by suggesting he might go down the route of Chinese medicine which I don't think is going to be able to help his particular situation. He is seeking various opinions. But I would really like to speak to the top expert in our country in this field. You say that is Prof. Harrison at Guys. Do you mind me asking how you know that she is the leading expert in this field? I have researched this a bit and it is difficult to know who exactly the right person is to go to. Thank you so much.

[Exeter21 in reply to Pookie24]

If you read up on MPN consultants Professor Harrison is the best knowledge. She studied this disease & its treatment for over 30yrs. I also questioned any treatment from my diagnosis as I had no symptoms. Just a shoulder sports injury . I pressed for blood tests as didn’t heal eventually after many blood tests told ET Jak2 positive. I was put on Hydroxy as I was told I had to go on it to reduce my platelets. I was extremely shocked & Hydroxy reacted badly on me. I felt I was given no choice of another drug. I read everything on MPN diseases & ET. I also tried after coming off Hydroxy to control the platelets with diet & natural medications. This did not work & I realised some medication would eventually be necessary. I contacted Guys Hospital & was told I needed a Drs referral for Professor Harrison. It took a couple of months to then receive a telephone consultation. Peg Interferon was approved. After only 4 injections my platelets were in normal range. I am currently off it until January & will then only use it monthly until we get correct doseage From my conversation with Professor Harrison she clearly has quality of life of patients more important. She is excellent to chat to in order to do the best for your health. Well worth your partner talking with her to ask advice. Hydroxy is offered because it is the cheapest & works however I found it pretty horrendous. The interferon is very gentle & tests show it has excellent results . Hope that helps you. Julia 👍

[Ratton]

I had a bad reaction to Hydroxy - my Cons Haematologist prescribed Anagrelide, have been O K ever since - Change of consultant necessary!

[Mwalimu]

I remember feeling bad, mouth ulcers and fatigue when first put on HU in Nov 2011. After some time (don't remember how long) things changed: I definitely felt better, mouth ulcers remain a problem just below the surface (I treat them with Anbesol liquid dabbed on) and the fatigue is still there but have learnt to manage it. I do hope your body adjusts to HU soon or you find help. Do not give up; keep pushing - you have the right to do so. Sallie

[dancingfiend]

I was exactly the same July/August 2021. Only ET JAK2 but anyway .. if you can bear it and haematologist will issue 600 mg aspirin try that when head worst (AFTER food!). All came good suddenly but that was for me . Have to dash - invigilating mock GCSE exams!

[Solyesh]

As everyone has mentioned, might be time to seek a different opinion/consult. A doctor should never dismiss a patients concerns/symptoms. While HU is well tolerated by many, some of us, including me, do not tolerate it well. When this is the case it is time to think about changing to another medication. We are lucky these days that there are options.

[Exeter21]

really important to contact your MPN expert in your country. If UK it’s Professor Harrison at Guys. An email can be sent by your Dr at local surgery . I was horrendous on Hydroxy took myself off it as too I’ll . I was approved Interferon backed by Professor Harrison who rings for consultation re medication. I still go to Haemotology for blood checks. Hydroxy is cheap for NHS & works for some & others like me turns into an anaemia brain fogged zombie which became normal once off it . 👍

[Bridie123]

Hi there, your side effects ( some of them ) will get better after sometime, the sore mouth etc. Though ofcourse we are all different.

[Jcd22]

To help with mouth ulcers I tried changing my toothpaste. I now use one from Weleda - Ratanhia- Zahncreme which has really made a difference. Also a soothing gel called PerioRub. Hope they help you too.

[indy22]

Thanks to everyone for replying, I live in Edinburgh Scotland and I don't think we even have an MPN specialist! I looked through a list someone posted and there was one but in Glasgow and when I clicked on his name it said not available . I heard that he did work in a private hospital at murrayfield hospital so I might try giving them a phone . I totally agree that Hydroxycarbamide is probably the cheapest option on SNHS hence the reason being reluctant to change my medication!! But I will definitely be sticking to my guns and try not to let them change my mind for me. Thank you again you wonderful people stay safe and healthy ❤

[Hocus58 in reply to indy22]

Hi

I also live in Scotland and there is indeed an MPN Specialist here. Dr Mark Drummond works in the Beatson in Glasgow but does consultations at The Spire in Murrayfield, Edinburgh. I have had a private consultation with him but my NHS Haem consultant on speaking to them asked if I wanted referred but I had already made the appointment so your Haem should be able to refer you. The Spire are very helpful on the phone if you need to ask anything.

It took 3 months for my appointment unless you can get a cancellation.

Dr Drummond is very nice, and very knowledgeable and I was pleased to note that my Haem studied under him and she also confirmed that if required they defer to him for any queries. The Dr that diagnosed me also now works for Dr Drummond at The Beatson.

I must say that I have found Hydroxy is the first line drug of choice, in Scotland I can’t say for anywhere else, and only if there is any family history, whether you have had BCC in the past and I suppose other issues, do they try anything else to start. Dr Drummond did confirm this. Obviously you have tried Hydroxy and if you are intolerant then maybe he could advise and throw some weight behind the next step for you 👍

Wishing you well, let us know how you get on.

[Lucycourt in reply to indy22]

Marie Farquarson was consultant in EDINBURGH sadly she died- She very active in getting patients to meet and organised meetings with speakers / lunch ect. Sadly never the same doc when hospital appointment > Being 81 I am end of queue for appointment - last 2 cancelled one by phone . You take care.

[indy22 in reply to Lucycourt]

Marie was my consultant to , it was very sad her passing she was a beautiful young woman .

[1219Smokey]

My late husband got the same treatment, totally ignored by the haematology dept

when telling them about severe side effects, until they finally told him he had bone marrow

cancer caused by the side effects. Something should be done about this kind of treatment

because whatever age you are you should be listened to. Makes it legalised murder

ignoring people's concerns. After three years since I lost my husband I am not giving up