hydroxycarbamide and working any tips and suggestions.

[cheeks1]

Good afternoon

I am looking for tips and some advice on how to manage side effects of hydroxycarbamide and working full time. I currently work within the NHS as a midwife and finding it very difficult to manage my body especially extreme fatigue, nausea and pain.

So far considering giving up or work part time but that’s doesn’t pay the bills or to survive on and do actually love my job.

Stopping meds as although my symptoms was bad before starting this medication. This now actually feels worse on the risk v’s benefit scenario.

Can’t take Peg and had some serious side effects from taking that too so came off them a while back.

I have tried to do some additional exercises to help support the fatigue and have antiemetics for the nausea but doesn’t really help.

To be honest this is making me quite miserable, i actually feel apart from working I have no life. I thought I’d post so I can get some advice.

Any suggestions would be greatly recieved.

[Grendall]

Hi Chheks1

Please see my earlier post today titled ‘impact on working life’

I have done the exact same as you and asked for advise for the exact same reason.

The reply’s and help on this site are amazing

Good luck in your decision xx

[YDDUK2007]

You Can Go With Jakavi Tab & Please Tell Hematologist

[Smudger0122]

Hi Cheeks1

I to am on hydroxycarbamide and yes, does make me feel tired. But I have recently been diagnosed with GAD, which also can cause tiredness.

So I am confused and also feel down with the health impact that ET causes.

Essential Thrombocythemia is a blood cancer, and is classed as a disability.

I am Firefighter and work for the London Fire Brigade, by-law your place of employment should make reasonable adjustments for this condition. Part of the disability at work act.

So may I suggest you contact your HR and possibly Occupational Health service to ask about this.

I found this link on the NHS website, hope it helps:

nhs.uk/conditions/social-ca....

Don't throw the towel in, your employer should by-law assist you.

I am still working light duties at moment, but do hope to get back to full operational duties soon.

Hope this helps, keep in touch.

Smudger

[cheeks1 in reply to Smudger0122]

Thank you so much for your reply, my employer has been unhelpful but will speak to HR - OH made recommendations that they seem to ignore when it suits them. Thank you will look into this further.

[Smudger0122 in reply to cheeks1]

No problem

Keep us posted and hope all works out for you.

Remember by-law they have to make reasonable adjustments.

[hunter5582]

It sounds like you are also intolerant of HU. Since you already tried the other first-line treatment option (Pegasys), perhaps it is time to try second line options like anagrelide and Jakavi. There are also new medications in clinical trials like Bomedemstat.

Hope you find a viable solution soon.

[cheeks1 in reply to hunter5582]

Thank you will discuss this further with them

[Smudger0122]

Hi Cheeks1

Just found this as well:

bloodcancer.org.uk/support-...

[marcerelio]

Hi I would suggest to go Jakavi (Ruxolitinib).I've been for how many years Hydroxy,things all has worsen . and now more than 4 years in Jakavi thank God all is getting normal my platelets count.I am greatly thankful.

[ainslie]

As others mentioned Rux could be an option, easy to take and less sides if any, some can feel increase in energy on it.

[Wyebird]

Hi all I can say is when I was teaching there was a teacher there with MS. She was allowed support. You are a valued member of society. Have a word with your union rep. I think there is a duty of care to employees.HR might be able to access it . Keep us informed .

Take care

[Wyebird]

Go on government website. It mentions illness such as diabetes type in ‘access to work.’ Good luck

[Swim360]

Hi Cheeks1Diagnosed with PV in May'22 I am also suffering from fatigue.

My consultant said it could either be the condition or the hydroxycarbamide.

Whilst I am reluctant to take the hydroxycarbamide it is controlling the condition.

I am dealing with the fatigue by continuing with a good exercise regime, drinking lots of green tea and water and taking a magnesium supplement.

Since taking the magnesium supplement I do feel less tired but take advice from your Consultant before taking any supplements.

I also am a good napper so I take a 20min time out when I need too and this seems to work.

I'm full on at work and so far coping.

I am staying positive which is really important particularly when I am feeling tired and understand I have to learn to live with this condition.

There are many knowledgeable people on this forum particularly when looking at alternative treatment options.

As Hunter said to me you must look at your quality of life and identify what is the best treatment for you and discuss with your team,

Hope this helps and good luck,

[Exeter21]

it was definitely Hydroxycarbamide that left me wiped out & low energy . It was horrendous feeling & only coped with 6 weeks as normally fit & became a zombie. Currently just aspirin until news medication agreed. Don’t just suffer try another medication. It worked well on my platelets but quality of life was destroyed. Our bodies all react differently to every drug. I was Police Officer always active & this reaction was definitely the drug not my ET . Once off energy etc recovered after 3 weeks once out of system . 👍