Hi with PBC, do we qualify for the blue card for disabled parking? Or is there certain restrictions. I’m currently struggling to go out with fatigue so this would definitely help.
Blue card for parking: Hi with PBC, do we... - PBC Foundation
Blue card for parking
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P13jne
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Hi there
If you are in the uk you will have to be on pip and be awarded the enhanced payment for the mobility
Hope this helps
Thank you, I wasn’t sure. But there’s no chance of that.
No I know what u mean, are you still working at mo with pbc
I’ve been signed off work since Sept. started as lymph nodes in my neck, groin and under both arms. Had 3 removed from my neck and got all clear. Turns out it’s all related to PBC. I’m suffering badly with fatigue. I don’t go out very often and never on my own as suffer dizzy spells, along with all the usual aches and pains. How are you doing? How long have you been suffering? X
Maybe you could apply for pip, I did a while bk but was turned down. Had pbc since 2012, doing ok on a clinical trial at mo with good results. Suffer with bone pain and bad fatigue
It’s a horrible reality when it’s first diagnosed. Why did they turn you down for pip. It’s not going to go away. Although I had heard it’s not easy getting it. Have you always had fatigue? I asked my consultant about it and she said it’ll just take time. X
Hi,
I think with pip it's all about what u can do not what u can't do. So if you can stand on one leg and put the kettle on your fit. 🤦♀️Will reapply in the future. Have been on sick from work for over 3 years now and did go for a Esa assessment and was given it in the support group even though I was still employed. That's how they found the pbc because I felt tired all the time and it's never gone away even though my bloods are within range because of drug trial I'm on.
How did you get onto the trial? Did you have PBC for long before it was suggested? Hopefully the next time you apply there will be no issue for you. 3 years is a long time to be off work, I was hoping it would start to get better soon, but am under no illusions that it’s gonna take time. Always willing to listen, hope I’m not bugging you too much x Jane
No it's no problem message me anytime, had pbc 6 years before trial and classed as a nonresponder to uso. I go to queen Elizabeth hospital in Birmingham and they put me on the trial, it's the second one I have been on. You didn't say if you have been put on meds yet. Think everyone is different
but my fatigue has never Gone away. I have finally finished work now.
I’m currently on 750mg of Urso, only since start of Feb but having tummy pains. Consultant says too early to decide what’s wrong or if meds need changing. Waiting till I’ve been on them 6 months. Are both trials similar? Glad you’re finished work, I’m maybe thinking of packing in altogether over the next 6 months. X Jane
You don’t have to be on PIP or any other benefit in order to get a Blue Badge although the process is easier if you are. Contact your local Council or you can check your eligibility and claim on line. Good luck.
The blue badge, as far as I'm aware, depends almost entirely on your ability to walk. The relevant info is online - not sure if it's on gov.uk or your county council website. Good luck.
Thank you I’ll have a look x
For some reason fatigue has been associated with pbc even if your bloodwork comes back normal. For me I had low iron and had iron infusions. Haven’t felt a difference as of yet. Been couple of weeks.
I fall asleep very good but wake several times throughout the night. Does anyone else have that problem??
Also was given the herb skullcap to try from a friend for sleeping
I’ll see if that works or helps anyway. Gonna try it tonight to see if I notice a difference. She said sometimes it takes a few days. Sometimes not.
Will see and hopefully helps me to stay asleep.
Hi the fatigue is awful, it’s debilitating me so much, I barely go out unless I’m with a family member. I sleep during the day off and on, the during the night too, I waken a lot when I’m turning as my muscles and joints ache.
Hi, I have had pbc for nearly 10 years and have a blue badge for over 5 years. You get a form from your county council, and if you don't get PIP you have to answer all the questions; eg list all your medical problems, your meds and treatments, how far your can walk etc. Best Advice - answer as if it is a bad day, eg not how far walk on a good day.
My form was assessed by an occupational therapist. You have to reapply every 3 years. I do have other medical conditions, COPD and a bad back. Since I last reapplied I have now got not PIP but get AA as I am a OAP.
Also, get help filling in and answering the question from CAB or similar.
Patricia thank you, I hope you’re keeping ok too. Good advice xx Jane
