Essential Thrombocythaemia PIP?

[DENMOOR]

Hi

just thought would say hi as not been on for awhile 😊

I’m considering applying for PIP … I’ve had ET now for 27 years CALR… chemo for 22 years. I’ve had to reduce my hours and leave my job as an NHS Paramedic… fatigue was killing me and just had to leave. I’m a trainer now working part time, money tight but mostly the tiredness and chemo fog affects me badly. No energy, no enthusiasm… I have good and bad days 😢 I’ve called DWP and set the ball rolling re PIP application and was wondering if anyone had been successful?

thanks for reading

Denise x 😀

[Cat1001954]

Hi I’m 69. Triple negative ET we applied for attendance allowance as my hubby does everything as I’m so fatigued all the time. Got turnt down. Can’t understand why. But I wish you good luck

[jillydabrat in reply to Cat1001954]

You should appeal. Most claims are turned down first time. If you appeal and win you will get back payment to the day you originally qualified.

[DENMOOR in reply to Cat1001954]

Hi so sorry you have this. I’m thinking not going to attempt to apply as not poorly enough. I’m constantly exhausted but still work as have a mortgage to pay still 😌 Denise

[gilded in reply to Cat1001954]

Did you seek a review ( appeal) of the decision? Perhaps you could consider applying again. Advisable to include every bit of medical evidence and every detail of how you are adversely affected. It might be useful to do a draft first and review it thoroughly before incorporating it in AA application. Also, you’re 6 months older now.

[lizzziep]

Have you filled the form in? If you check online you will see the descriptors’ needed to qualify. You need to get a certain number of points to get anything. Work out what you need help with and write everything down before you fill the actual form in, check what they give points for and make sure you give full details of your day to day living problems. Also ask your doctor to back you up. I get it but mainly for my arthritis. It is hard to get, I think they consider all applications are exaggerated. I had someone visit me from DWP, she was very nice and backed my claim.

[Kari1961]

I was successful with my PIP claim, although it wasn't based on PV but on the after-effects of a stroke I had in 2012. I suffer from a tremor/weak right leg and cognitive issues. Citizens Advice helped me to fill the form in, my GP and Stroke Consultant wrote letters confirming my health issues and I also sent all of my haem appointment letters. I was then called for the face-to-face assessment. Good luck with your claim.

[Tea2]

Don’t forget to fill in the long tedious form as if the questions are about your worst days. To qualify you need to be ill at leat 2 weeks out of 4. The best people to help you fill it out are the Citizens Advice Bureau. They have volunteers at Guy’s Cancer Centre that sit with you and fill it out

[jillydabrat]

Hi Denmoor

I have PV and I get full mobility and care. I am now in a wheelchair because of osteoporosis and the associated joint pain of PV. I am not sure how it would apply to you as you are still working which means your mobility must be okay but it’s worth a try but be warned there are pages and pages of forms to complete. You must fill out the forms as if it was your worst day ever. Good luck, hope you are successful.

[CraftySpider]

Hi Denise,

I successfully claimed PIP for Myelofibrosis, ME & Joint Hypermobility it very much depends on what help you need , so any aids you use, things you need help with etc, rather than the specific illness ( although Doctor’s letters are needed too)

As fatigue is so hard to explain to others, write about what you can & can’t do on a bad day, if you need someone else to change bedding or do housework etc. There are some good Facebook pages & online tools which give you help in questions you will be asked and how to answer them.

Good luck.

[Exeter21]

Is it just ET you have ? If so I am same & found it was the Hydroxy causing my fatigue. It was almost instant once on it .

I came off it & went onto Peg Interferon & fatigue gone & normality back . I refused to stay on the chemo drug as made me so ill. worth exploring a change of treatment . The Interferon has been brilliant for me . Julia 👍

[DENMOOR in reply to Exeter21]

Hi thanks for your reply… yes just ET. How many mg a day did you take? I’m on 500mg a day and a 1000mg sat and sun… I’m getting so exhausted recently 😟 Denise

[Exeter21 in reply to DENMOOR]

I was on 500 x 5 times week it was horrendous . Peg interferon brilliant now 👍

[Exeter21]

I was on 500 daily 5 times a week . I was so exhausted I would fall asleep as soon as seated. It was the medication , I came off it completely & took me a few months to recover. I then started Peg Interferon as I refused to go back on HU.

My energy returned & healthy on the injection I do monthly of 45. Platelets within range . Injection easy to self administer in lower stomach . Don’t let them convince you it’s the illness as it was certainly the medication that exhausted me.

I got second opinion from MPN & opted for Interferon . Don’t just suffer with exhaustion . Drs would not cope long on HU . Julia 👍

[Hazelanne in reply to Exeter21]

Hi JuliaI'm on the same as you but only diagnosed in May but platelets started coming down but 3 months later rose! I am on 500mg weekly and 1000 sat and Sunday but I am absolutely exhausted. Is it too early to request interferon as they seem to prefer hydroxycabamide but I am so tired. Any advice? Thanks Hazel

[Exeter21 in reply to Hazelanne]

No ask for interferon tell them your quality of life is being ruined on HU with the exhaustion. Do not let them tell you it’s the complaint . When you come off HU the exhaustion goes . Try & get a phone appointment from MPN if you don’t get success with Haemotology. HU doesn’t agree with everyone & it wiped me out completely hence I refused to continue on it as I had read up on Interferon. I had a 3 month gap on nothing before I started on interferon so I could definitely tell that it was the HU causing exhaustion as all went once drug out of my system . Julia 👍

[Hazelanne]

Hi Denise I am on exactly same dose as you and since May and increased weekend dose as yours and the fatigue is overwhelming. I was told this was better than interferon but my platelets are still rising so I'm going to look into injection as cannot function like this. Are you any better on higher weekend dose?

[Exeter21 in reply to Hazelanne]

Interferon doesn’t give you bad symptoms & having been on Hydroxy I know Interferon life changer for me no bad side effects if doseage correct 👍

[Otterfield in reply to Exeter21]

Our bodies all react differently. I was fine on Hydroxycarbamide but had bad side effects on Interferon.

[Hazelanne]

Hi DeniseMany thanks got appt with Consultant in September so will raise this. To be honest I've worked at my Trust for 28 years and never felt so overwhelmed. They don't seem to be telling me everything first it's the disease then it's the tablets but to be honest the double weekend one is real draining. It's a comfort to know I'm not alone. Thank you and I will keep you updated. Hazel

[Charlieapple2018]

How did you get on with your claim? I recently tried but don’t get anywhere and I’m wondering if it’s worth appealing.

[gilded in reply to Charlieapple2018]

It is worth seeking a review( appealing).