Do people on here work or do you claim disability allowance if taking hydroxycarbamide

[Foxylady0404]

Taking hydroxycarbamide and aspirin for high blood count can you claim disability allowance?

[Vtr1000]

Hi Foxyfox, I’m on the same meds and I am still working. However, I only suffer mildly with side effects which doesn’t effect me currently with work.

[Foxylady0404 in reply to Vtr1000]

Ok thankyou my last job was hotel housekeeping I found very tiring it's a job I'm not going back to it's just finding something suitable again at some point

[Kari1961]

Hi Foxyfox

I'm also on the same meds, work and don't really suffer any real side effects - I did to begin with, but after taking them for a few months everything calmed down.

Have you spoken to your consultant about the tiredness?

I also get PIP (Personal Independence Payment) - it replaced DLA a number of years ago. But that isn't anything to do with the medication I take; I had a stroke in 2012, which left me with a weak right leg and essential tremor. It's not means tested, hence the reason why I get it and also work.

A suggestion would be to get in touch with the Citizens Advice Bureau to find out what benefits you could apply for... they are also excellent at helping with any claims if needed.

[Foxylady0404 in reply to Kari1961]

Ok thankyou I take 2 tablets a day just seem to feel tired as I'm getting older like my afternoon naps I've been on this medication for a few years now

[Hidden]

Hi Foxygox I applied for PIP as same as you suffer fatigue I also have anxiety and have other problems now too but was refused. Yet I know people receiving this help and I am in worse health than them. MPNs not classed as cancer to some, they dont go on your condition, they use a point system to look at your quality of life, you have to show them you are almost fully disabled before you get help. I was honest with my application I do have genuine problems but no help, I am still working but do struggle Good Luck xxx

[Foxylady0404 in reply to Hidden]

I no it's a nightmare I bet trying to get help with pip I no people get it how they manage to do so is unbelievable

[Hidden]

Thankfully I only work part time and my job is not heavy work, but even I struggle with carrying things or taking things off shelves, I get breathlessness at times and feel like passing out at times put all this and got no help. This help would allow me to retire a bit earlier I am one of the 50,s women too missed out getting pension at 60. Luckily my employers help me with flexible working and light duties could you get employer help like this change hrs etc to help you

[Foxylady0404 in reply to Hidden]

Will have to see what jobs are available I have sheilding letter at the moment

[Foxylady0404 in reply to Hidden]

I no people that have fibromyalgia and claim pip which I dont understand that's why they get it I've never heard of it before and its everything you could have illness

[Wyebird]

Im 64 and retired. I know I couldn’t work with this condition. I also know that if I applied for PIP’s I’m not poorly enough to get it.

[Foxylady0404 in reply to Wyebird]

I no just not fair

[Kari1961]

PIP is a fair system - If you have supporting evidence from your GP, Consultants and care providers. My claim was successful due to letters written by my GP, Haematologist, Stroke Consultant and Neurologist.

On the outside I 'look' fit and healthy. Not so though when it comes to living a 'normal' life. So, I had to 'prove' I was disabled to get PIP! - I am, and the supporting evidence proved it. If you need PIP then supporting evidence will show that you need the extra financial support as it did for me.

[Wyebird in reply to Kari1961]

Sorry I disagree, my friend’s daughter was discharged from hospital after recovering from a rare form of encephalitis. For 6 months her mum had to bathe her change the bed and nurse her. I witnessed this. She was summoned and failed to get it.

Really glad you’ve got it. I love success stories xx

[Kari1961 in reply to Wyebird]

I'm obviously only commenting on my successful experience. I work, have no full time carer. I provided the necessary supporting evidence and went for the regulatory interview and got the daily living PIP award until 2023.

[Foxylady0404 in reply to Kari1961]

I dont think I will get it I take propopranol for irregular heartbeat and anxiety as well

[eastwood1932]

Hiya Foxyfox, I have ET and am on Hydroxycarbamide. As this is a chemotherapy drug you can apply for income related ESA if you cant work and if you meet their money criteria, like savings less than £6k. PIP does not ask about income, savings etc but is a long form about what you can’t do anymore. I applied first in my mid 50s and got Age UK advisors to help complete the form - would say I have mobility problems after major surgery for clots and neuropathy so was fairly easy to make a case. You will need supportive GP/Heamatologist as well

[Foxylady0404 in reply to eastwood1932]

Ok thankyou

[Foxylady0404 in reply to eastwood1932]

I will try although have not had major surgery

[eastwood1932]

It’s about your problems, the problems after surgery just made my claim easier. You do have to play up your problems unfortunately, but that’s the game we have to play. I do strongly suggest you get help completing the forms, Macmillan, Age uk, etc. They have people trained in how to word things the best way.

Good luck

[Foxylady0404]

Thankyou

[bevnb]

Hi Foxyfox,

I too am on the same meds and working full time. The one side effect I am having is my hair, starting to lose quite a bit. Other than that, not been too bad.

[Jlah]

I’ve just applied for PIP but stupidly did not follow advice to consult CAB or Macmillan (just felt they would be too busy with more pressing concerns at this time). But you do get a chance to appeal and do I will contact them then. It does seem the threshold is v high ie unable to dress yourself, be mobile. Good luck. Jx

[jillydabrat]

I receive PIP. I worked as a PA for a consultant child psychologist and loved my job but the fatigue was so debilitating for. The thing that affected me the most is the joint pain. I cannot stand for any length of time without a severe burning pain in my spine. Without my pain relief, and I am on lots, my life is unbearable because every joint in my body hurts. When I see posts saying that people have only mild symptoms I wonder why I am so unlucky with mine. I have now had to purchase an electric wheelchair, without which I couldn’t go out because by the time I walked a short distance around a supermarket I was clinging on to my husband’s arm with pain. I wonder why some people have so little symptoms while others have severe, debilitating symptoms.

[Bridie123 in reply to jillydabrat]

I wonder about this too, on paper I shouldn't have any problems, in reality I suffer quite horrible things and to add salt to the wound, to the onlooker, I look so well! Which I know is good, no one wants to look ill. 🙃

[Foxylady0404 in reply to Bridie123]

Hi same here x

[JaK2ET in reply to jillydabrat]

Differences in symptom burden may relate to differences in underlying genetics, inflammatory processes, etc. Your symptoms sound most distressing. Have you had a review with your medical team to make sure that you are getting the most appropriate treatment? (Of course it's difficult at the moment because "non-urgent" medical matters are having to be postponed to make room for CoViD19 ... )

[piggie50]

Disability allowance is assessed on your disability, not what drugs you take. Hydroxicarbamide does not automatically entitle you to disability allowance.

[Foxylady0404 in reply to piggie50]

Pip would help

[Foxylady0404]

Pip would help

[isimmy]

I also take Hydroxy and Aspirin. When I first started on the Hydroxy I had quite severe bouts of fatigue and an occasional brain fog. As a result I had to cut back my working hours. However, after a couple of months things settled down and I was able to increase my working hours. I now only suffer mild bouts of fatigue, which I can cope with.

[Foxylady0404 in reply to isimmy]

I've had this 25years or more just need to find a partime job of some sort I was working at housekeeping at hotel very physical cant go back to that

[Foxylady0404 in reply to isimmy]

Do you take anything for fatigue

[isimmy in reply to Foxylady0404]

No I don't take anything, but I have adapted my working and social life a little bit to help offset the fatigue.

My employer is really supportive and allows me to work flexi-hours, so on good days I often work a little longer and on bad days finish earlier.

I love going to dance classes and social dances but have tended to reduce the number of dances that I do while there.

I suppose I have learned to listen to my body and if I get tired I slow down or have an early night.

The first couple of months were hard and quite scary when I started on the hydroxy (nearly three years ago), but after that the side effects reduced significantly and I have managed really well overall.

[wotan10 in reply to isimmy]

Greetings from Fleetwood England.

Diagnosed three years ago with ET no frilly bits.

Just hydroxy 2per day. Walk 3 miles a day presently.

When the gym returns I shall be back with my personal trainer and boxing keep fit. I am a positive person and lean how to pace myself. Each to their own.

[isimmy in reply to wotan10]

Just down the road in sunny Southport.

[Jbut]

Hiya, am on peg interferon and aspirin,but also meds for my spine and had knee surgery few years back. I work 24hrs a week for NHS, but i had to change job role a few years back, i was lucky my employer helped me, lighter work. I receive pip at lower rate, but i think its because of my spine problem that i receive this benefit .

[Aruntez in reply to Jbut]

Hii my wife is ET calr postive 31 years of age ,We are planning to take interferonby stoping hydab from next month for getting pregnancy. How is life with interferon it's too costly, we don't have any medical aid we need to keep from our pocket.

We are from India.