Hydroxy side effects

[SDJD]

Does anyone hold down a job on this drug? 6 days in and I am still feeling disorientated with memory and concentration problems. Do I need to give it more time or is it not agreeing with me? I'm supposed to be back at work next week after half term and know I will not be able to work like this.

Thanks everyone.

Suzy

[piggie50]

Hi Suzy,

Hydroxy affects everyone differently, also depends on dosage. Many people work on the drug. I take 500 mg per day and 1000 mg on Sunday's. I am now retired but worked full time on this dosage. I am very lucky that I don't seem to get any of the side effects that others seem to suffer from. Have you only felt like this since starting Hydroxy?

I hope you start to feel better soon.

Judy x

[SDJD in reply to piggie50]

Thanks Judy. Yes, totally drug related, I felt really well before taking them apart from a bit tired and tingling in hands and feet.

I don't know whether to keep with it or ask if I can switch to something else. I know it's early days but I've felt like a zombie all week and am worried about my job.

Suzy x

[Mwalimu]

I found the 'fog' did disappear but it took some weeks for me. Hope you feel better soon .. Sallie

[SDJD in reply to Mwalimu]

Thank you. Suzy

[Swede]

Hi there,

sorry you feel that way. I have been taking Hydreafor nearly 10 years now and yes, I do have lots of negative side effects but I have worked all the time.I think that working have kept me somewhat sane! The thing that really makes it worse is stress. It is for me, a killer. Unfortuneatly there has been a lot of negative stress at work for the last 18 months and that really made me ill. Everytime I am in a stressful situation I feel worse, so I have to avoid it if I can. My husband is a real and true time-optimist ...so he is my little stress maker (where are my keys, glasses, jacket....etc. 10 minutes after we should have left for an appointment or so...)

Anyway, at least I can blame him or the medication for everything... :-))

[flfair in reply to Swede]

You need Magnesium, lots of it for your stress.

[SDJD]

Thank you for your reply. I guess blaming the meds for anything and everything is a plus! Suzy

[Belgobrit72]

I started hydroxy in April. I have nit had any obvious side effects with it but struggled the 1st month with the side effects if the anti-gout tablets I was given. Once I stopped thrm, it was fine. I take 500mg 5 days a week and 1000mg 2 days.

[Lainy1]

Hi, yes i had foggy brain for a while but went away quickly, drink plwnty of water helped me. I take 16 tablets a week 🤢i have now developed the most horrendous bone pain in my shoulder down my arm and wrist. Bloods ruled out a gout rheumatoid factor slight raise. Had x-ray couple of days ago, hope this shows the cause. Your work should be understanding as it is a MPN you have. I'm back at work reduced hours doing light duties.

Hope you work it out

Lainy xx 😚

[Anneian]

I have been taking it for over 3 years 500 for 5 days 1000 for 2 days. I hold down a stressful full time job but am sooo tired by the time I have done a1 hour drive home. Finishing work end of November and get state pension in March 18. It has been hard working but need the money. I don't like giving into the symptoms but have had enough of tiredness. At first I couldn't concentrate and my memory seems to be fading but that could be with getting older as well - 64.

[SDJD]

Thanks for all your replies, they all help. Today is the first day that I've felt more orientated. I don't know whether taking them just before bed helps or whether I'm just getting used to them. Hopefully will stay this way. Light duties at work sounds good.

Suzy

[Kev13 in reply to SDJD]

Hi, I have had ET for since 2000 and started off with Anegrelide, which caused some slight nausea but was ok. I was on a trial for this and it was stopped after a year or so due to concerns of Leukaemia, I think.

Have taken HU for 15 years and worked until Dec. 2013 and have never really had any side affects or for that matter symptoms of ET other than lethargy and tiredness from whichever one.. I used to run a bit and have been going to the gym for all that time two or three times a week, hoping my circulation being and fitness good will help.

So I would say that generally HU is ok except for the tiredness

Kevin

[SDJD]

Thanks Kevin. I'm having a better day so feeling optimistic with its long term use.

Suzy