Side effects and reaction to other drugs on hydroxy

[Garden987]

Have just read the possible side effects of Hydroxy - loss of appetite,weight loss, constipation, confusion, mobility weakness - all of which I have - also every drug I have been given have caused horrendous side effects. Spoke to haemo. Dept. Today and learned that my bloods "are fine". She had no answers re the above. I wonder if any others have similar problems. In essence, she said it was up to me whether I took Hydroxy. Or not - am on the same dose now -2000mg 6 days and 3000 one day and have been on this dose since diagnosis 4 years ago. I said it seems to me that they are only interested in blood results and not the person. Have any of my MPN friends had similar problems? Thank you in advance. Mary.

[Mardihel]

Hi that sounds high dosage,what is your platelet count presently?

[Garden987 in reply to Mardihel]

HI Mardihel. My platelets as of today are431. Eight weeks ago they were 319. Haemo. Says this does needs to continue for "maintenance" !!!!!

All good wishes. Mary

[Mardihel in reply to Garden987]

Hi Mary, can't believe you have to continue with such high dosages of hydroxycarbamide, my count is 700 presently I take 500mg each day, it makes me so fatigued at times, my next appt in 2 weeks, will ask to lower if platelets come down. Good luck, If I had not had blood test for something else, I wonder when it would have been found !!!!!!

[Garden987 in reply to Mardihel]

Hi, made a mistake with dose age as I have already posted. I take 2 500 mg for six days and 3 500 on the seventh. Still seems odd to me that I'm still on the same dose though. Have lost 6kg in weight although my haemo doesn't know that as we have phone consultations. All. Dry frustrating. Thanks for replying. Mary

[stillkicking]

Hello Mary,

That dosage is high compared to mine. Does that mean you are taking 4 tablets a day for 6 days and 6 tablets on one day? I think most of us have 500 mg tablets ( or capsules).

I find that I have to include lots more fibre in my diet to avoid the constipation that the Hydroxyurea tries to give me. For breakfast I make a sort of warm mueseli from oats, bran, sunflower seeds, raisins, cranberries, cashews, and sometimes dried figs or prunes depending on "need". I start that by warming up about a teaspoon of olive oil in a pan, toasting the sunflower seeds and cashews in it, then progressively adding everything else. I stir most of the time to stop anything sticking or burning, then serve it up in my favourite bowl when warm right through. Some milk and yoghurt and a kiwi fruit completes the feast! The good thing about it is that I can fine tune the ingredients depending on how my insides are behaving, and it doesn't taste like medicine!

I find I am tending to gain weight on hydroxyurea (I am guessing that my metabolism has slowed down). Fatigue and sensitivity to our harsh sunlight are my big battles.

Another battle is to be treated as a human being that is more than numbers on a lab report. I really do feel for you with all of that, the difficulty of living day to day with illness and medication for it is so much easier to deal with if doctors in their white coats show empathy and compassion. Big hugs to you Mary,

Peter xx

[Garden987 in reply to stillkicking]

HI Peter. Thanks for your reply and recipes. Made. a mistake in my former post. I take 1000 mg. 6 days a week and 1500 on the other day. My platelets -again misprinted - today they were 341 and last time were 319.

I still find it odd that despite the .istlf

Ossi le side effects the registrar wouldn't even acknowledge it! Suggested I talk to one of the charities. so. Despite these horrible symptoms, the bottom line is take the meds. Or risk a stroke! Some. How e eh? Will certainly try your recipes and hope that my appetite will improve. At least I've lost kg.

Good for you Peter. I wish you well. Mary

[stillkicking in reply to Garden987]

Hi Mary,

Thanks for clarifying the pill numbers. I was on the 1000 mg per day until recently, but now have increased to 1000 the first day, and 1500 the next. Every increase I have had with the medication has made me more fatigued. I'm hoping that I'll get more used to it at some point, otherwise I'll have to become like a cat that sleeps whenever it feels like it! 😸Pxx

[PhilReade]

Hi I’m on 1500 mg daily my platelets are always around 400 to 500 I’m on Apixiban to Amlodipine allopurinol statin pantroprazole VK penicillin and artoveserten and Zapain x 8 daily

I had a splenectomy in 2014 I’ve had two DVTs Haematoma x 2 haemateuria x 1 and two TIAs of recent

I’m fatigued daily my mobility is horrendous in my feet joints knees and back

I have steroid injections under general anaesthetic twice yearly in my feet as two operations failed on left foot my right I have bone erosion

My knees both need partial knee replacements and I’ve stenosis in my back

My Haematolygist says the Zapain in his opinion causes most of the fatigue! I beg to differ

Regards

Phil

[katiewalsh in reply to PhilReade]

Hi Phil, You have had, and still are having some unbelievably challenging health issues. Are they having you take a blood thinner? I don’t recognize the drugs you mentioned. But having TIA’s while on Hydrea suggests you might benefit from blood thinners. I’m on two: Eliquis (like Warfarin) and baby aspirin. One protects against blood clots in veins, the other protects arteries. Best to you. Katie

[PhilReade in reply to katiewalsh]

Hi Katie

Yes the blood thinner is same as yours Eliquis is Apixiban same drug others I’m on are blood pressure and heart medication and strong pain killers

You’ve obviously gone through same as me have you had TIAs ?

All the best

Phil

[katiewalsh in reply to PhilReade]

Yes, I had at least one but because I had a second similar but less pronounced experience & there were no objective brain imaging changes after the first, they said they thought it wasn’t a TIA. Im told Eliquis doesn’t protect against things like TIA’s and that’s why I’m also on a baby aspirin every other day. You might want to ask your specialist about that. Katie

[PhilReade in reply to katiewalsh]

Hi Katie

I was on Clopidogrel and aspirin prior to the Apixiban they stopped the Clopidogrel and Asprin

I’m on one Apixiban in the morning one at night

My TIAs I had temporarily vision loss in my left eye my brain scan didn’t show any adnormalaties

I’ve also blacked out and ended up in hospital they found heart palpitations on 24 hour heart monitor

I get blurred vision to they said it’s micro emboli small blood clots

Regards

Phil

[katiewalsh in reply to PhilReade]

Did you say if you have a good MPN specialist? Katie

[PhilReade in reply to katiewalsh]

Mine is excellent he is Professor Sommervaille at Manchester Christies hospital

How bout you ?

Phil

[katiewalsh in reply to PhilReade]

I see Rami Komrojki at Moffitt Cancer Center in Florida every 6 months. He works on some research with Srdan Verstovsek from MDAnderson who is one of the top people in the U.S. The rest of the time I get labs done by someone who’s competent enough for my needs. But so far I’m an easy case. Katie

[azaelea in reply to katiewalsh]

Hi Katie, I was just diagnosed with ET in July this year and have just been on Hydroxy 500mg daily for a few weeks as Breast cancer was diagnosed around the same time. I now have to stop Hydroxy during Radiotherapy treatment after a Lumpectomy but what I do wonder is, would treatment with baby Aspirin not be enough without Hydroxy as it seems to be what prevents TIA's and clotting. I can't find out if Hydroxy does this too. As I seem to have no symptoms like fatigue, aching hands ,feet etc. I wonder ,when reading posts from ET sufferers ,such as poor Mary, if a lot of the fatigue and pains are in fact side effects of the Hydroxy. Maybe I am just in the early stages as I was just diagnosed because GP noticed my platelets were high (600 ) when diagnosed (830) at last appointment which Haematologist said probably due to recent operation. Just wonder what you think in view of your TIA history? Regards,Fran

[katiewalsh in reply to azaelea]

Hi

Many patients are treated with only aspirin if they have no history of blood clots. Seems like that should be worth asking yr doctor about using while you can’t take Hydroxyurea. Hydroxy reduces the platelet number. Aspirin acts like a blood thinner. I’ve been on Hydroxyurea for a few years and fortunately do not have the bad side effects some have but those may be from their cancer & not Hydroxyurea. Everyone is so different. Best of luck to you. Katie

[Ebot]

Seems quite a high dose. My counts are higher than yours but I’m on one capsule a day and two on a Friday. I think each capsule is 500mg. I got the impression the haems are keen to keep the doses as low as possible. Inevitably it’s going to be a balancing act. And certainly mine seem keen to monitor any side effects (thankfully none in my case). Are you seeing a specialist MPN team?

[Val_P]

The dose is weight related so the heavier someone is the higher the dose needs to be in order for the drug to be effective. I've been on Hydroxy for 10 years now. My platelets are well controlled. Yes I have bone pain, muscle weakness, fatigue and various other side effects. I have been so much better since taking early retirement though. To be honest if it wasn't for the medication I'd probably be dead by now or worse. So I'm grateful that I can live my life albeit with some adaptations.

[forwardocho]

I was on a high dosage of HU when first diagnosed in January 2016. I was on 2,000mgs daily and 2,500mgs at weekends. My platelets at that time were 791 and that's the highest they have ever been in 3 years. When my platelets reached the 500 mark my dosage was dropped to 1,000mgs daily 7 days a week. My Haemo has tried to drop me down again to 500mgs but my platelets shoot through the roof so i'm currently sat at 1,000mgs which seems to suit me well.

That is a very high dosage for what your platelets currently sit at. Normal range is 250-450 and you are within that range. I would suggest you ask your Haemo to drop you a tablet and take a blood test within 2 weeks (that's what I have to do when my dosage changes).

Do you have full FBC's when you have your bloods done? Were there any other flag markers on your bloods i.e. HGB, ALT's?

I hope you get it sorted out.

[Garden987 in reply to forwardocho]

Hi, Thanks fir your reply . I know we are all different and have our own ways of coping. My reason for questioning side effects of Hydroxy were mainly due to confusion. I am unable to absorb instructions on phones and am having trouble absorbing instructions. My brain just won't let me. Am very stressed. And worried because my haemo was t at all concerned. Am finding everyday tasks, I..e. Paperwork and all the mundane things we all have to deal with. Brain obviously not doing what it should, which is very distressing. Major drama for me - can't find an"idiot" phone anywhere. This causes huge stress which is. It good for us. Can't switch brain off or rest enough because of the mundane matters of life that need to be dealt with. I live alone, am 79 and am very isolated - neighbours not forthcoming and have to have taxis everywhere because can barely walk. I am so happy for those of you who have found ways of coping and long may it last. It would be so good to go,for a walk but legs won't let me so spend most days alone and apart from walking 95 times to the loo that's it. Sorry everyone not to be positive as so many of you are. Good for you. I wish you all good days and congratulate you on your positivty. Needed a whinge. Love to all of you. Mary

[forwardocho in reply to Garden987]

Hi Mary

I'm so sorry to hear you're feeling the way you do and I really hope it improves for you. My reply was merely to respond to your post with the hope to give you an insight of what I felt like when I was on high doses of HU. It's a horrible feeling and makes you feel dreadful. I was more concerned that you are on such a high dose, more so, because your platelets are in normal range hence why I asked if anything else had been flagged up in your bloods.

I understand the feeling of isolation, albeit I do have friends around me, but they don't understand what it feels like to live with this disease, no-one does, unless you have it.

I do still suffer every now and again with joint pain and fatigue and some days can sleep for hours on end!

Is there any possibility you could be transferred to another Haemo, as the one you have does not sound very compassionate.

I wish you well Mary.

Best

Angela

[Garden987 in reply to forwardocho]

HI . Thanks for your reply. I made an error when stating my Hydroxy dose. I'm on 1000 for 6. Days and 1500 on the seventh. What has upsetmeis that when Ilisted the side effects on the insert on Hydroxy. She wasn'tinterested. Am on the same strength now as at diagnosis (4 years) and have lost 6kg. She wouldn't entertain lowering the dose 413- as it keeps things stable. Said it was my choice to continue with meds. Saw an "expert" last year. And he said. I would get as. U h information. And support. On MPN as he could give me. There is no other. MPN doctor to contact. BEing so isolated and having to have a taxi every time I do go out is so stressful. Do try to accept. Situation but there's only so much a person can be expected to bear. Sorry about your pain. I know we are all struggling but I only have my daughter. NO friends or family which makes life very sad. I wish you well and hope you take care of yourself. Mary

[azaelea in reply to Garden987]

Hello Mary, I really sympathise with you with what you are going through and I believe the forgetfulness and memory thing is definitely a side effect of the Hydroxy, as well as the chronic fatigue. I wish your Haematologist would lower your dose at least to see if there was an improvement in your health. I was only diagnosed with ET in July and have only been on Hydroxy for a few weeks before having to stop it as I am having Radiotherapy for breast cancer shortly. I will most likely have to start it again when that is over. I was on 500mg firstly then he put it up to 1000 mg a day just before I had to stop. I did experience some tummy and bowel problems at first but they settled down. I am 82 and I must say I have had wonderful support from my friends at St.Marks Church which I have attended and been very involved with for the past 60 years. I send you love and prayers that your circumstances will get better soon. All our friends on this forum will keep in touch and you need not feel lonely. Regards, Fran

[Val_P]

Which area do you live in Mary. Do you have a buddy? Living with this can be tough. I really do understand, I'm still taking the antidepressants, and frightened to stop them as I don't want to go back to that dark place. If you live in my area I'd be happy to buddy up with you Mary. I'm in the London area and go to Guys for my haematology appointments.

[Garden987 in reply to Val_P]

Hi Val. Thanks for your reply. No, I don't live in London. Sadly I live in Wales where the overall support and pastimes are short on the ground. It would have been lovely to meet you sometime. Being housebound and isolated is very hard but there is nothing I can do about it. If neighbours don't want to be involved or supportive that's the way it is. Are you on antidepressants because you are finding coping with your condition difficult? Can't take them but don't think I'm depressed - just struggling. Finding a phone I can understand is proving very difficult - brain won't cooperate! Very frustrating.. As a former very active person life has left me diminished and that is hard to be this way. But you probably know that from your own experience. So we somehow have to get through this. When you find the solution let me know? All my very best wishes to you. Mary

[mhos61 in reply to Garden987]

Hi Mary,

I’m sorry to hear of your continued feelings of isolation. It can’t be easy for you.

I wonder if you have applied for ‘Attendance Allowance.’ This would help towards your taxi fares at least. It sounds to me because of your limited mobility etc that you would be entitled to this benefit.

Mary xx💐

[Val_P in reply to Garden987]

I started the antidepressants while I was still working. I was a clinical lead nurse. I had been diagnosed with ET, on Hydroxy and was finding it difficult to cope. I couldn't remember things. I felt foggy in my head and not at all "switched on" I was so tired all the time. My concentration was at an all time low, really not good in nursing. I thought I had the beginnings of dementia and actually went to my doctor to be checked. I was referred to a psychologist who informed me that I was depressed. My GP started me on antidepressant and within a month many of these symptoms improved. I did carry on work for a while but my Counseller helped me to reach the decision to take early retirement . I'm so lucky to have good friends and family support. I did try coming off the anti depressants but found that after a short while I could feel my symptoms getting worse again. I'm happy to stay on a low dose forever if necessary.

I think you should apply for attendance allowance and PIP phone age Uk and they'll come to your home and help you fill in the forms. They might even suggest a few clubs in your area that you could go to and make some friends.

I wish you all the best Mary x

[Garden987 in reply to Val_P]

Hi Val. THanks for your reply. I M on Attendance Allowance which goes mostly on taxis and a cleaner. The social worker from the local hospital doesn't think I 'm depressed, just exhausted. I have been prescribed an anti depressant because about two months ago I said I wish I could die, felt so awful. The side effects of them. An be suicidal thoughts, restlessness, tremor etc. I have tried them in the past and thought I was losing my mind. My GP agrees that I can't tolerate them and prescribes diazepam instead. Don'T think I'm depressed but could be wrong.alrhough I do have difficulty concentrating and poor appetite but that's all. Can't wait to get out and do something interesting but am too tired. AN hours' conversation wears me out!Should have seen my GP today but had to go to bed. Not sure what to do about antidepressants. Will discuss it with her next week.Glad they are helping you but must admit to not wanting to take any extra meds. A lot going on here which is tiring and stressful so I don't know. Anyway, thanks for your suggestions and I hope you stay well. Best wishes. MAry

[kp27kathleen in reply to Val_P]

Hi there, I wondered which anti depressant you found to work. Thank you

[Val_P in reply to kp27kathleen]

I found citalopram 20 mg worked for me. But they do take about 3 weeks to kick

[Val_P]

I found citalopram 20 mg worked for me. But they do take about 3 weeks to kick in

[Grumpyfairy]

Hi Mary, sorry to read back on all your comments, whereabouts in Wales do you live? I’m in North Wales. Regards Jackie

[Garden987 in reply to Grumpyfairy]

Hi, I live in wonderful Chepstow . Mary