Prescriptions help etc for SLE

[tiapuss]

Hi,
I was diagnosed with SLE about 3 months go and was rushed into hospital two weeks ago as my muscles have all been eaten away by the inflammation. I am home now and taking a cocktail of different tablets every day which are being monitored every two weeks. Feeling better but still very weak - have never been so scared in my life.

I was just wondering what help is available to SLE sufferers in the UK... Is there are any help with prescriptions charges or disability/parking badges etc?

Any advice will be much appreciated!! xx

[Clare.T]

Hi Tia

You are certainly having a terrible time ((( Tia ))). I was reading your first post - I do hope they can soon get you on some better meds than Prednisone with all its terrible side effects. I don't suppose that helped much with muscles but it's a two edged sword.

Unfortunately SLE is not on the list of chronic conditions that entitle to free prescriptions. An parliamentary initiative to get it included on the list along with MS failed a few years ago.

Here is a thread about the prepaid prescriptions scheme.
http://www.thelupussite.com/forum/showthread.php?t=56263




Notice that some lupus patients do qualify for free prescriptions if use of Prednisone has led to a chronic condition hypoadrenalism ( I think ? I'm having a brain fart at the moment)

For disabled parking and so on, you apply to your Local Authority who will want a statement of the extent of your disablement. There may be some threads about this too.

Good Luck

Clare

[tiapuss]

Hi Claire,
Thanks for the info... its terrible that no real help is available. The past few weeks have certainly made me realise that I could not function without my cocktail of daily tablets!
Feeling slowly better each day now, still way too thin and very tired but my muscles seem to be rebuilding slowly thanks to the predisione tablets and the steroid drips in hospital. Slow process though and its scary how long it takes to build up to doing the smallest thing like being able to hold a full cup of coffee with one hand!
Lets wait and see what happens with my next set of blood tests next week and the results when I see my doc the following week... Fingers crossed!
Take care and thanks again

[Angelheart]

Hiya Tia
Luckily for me I have a underactive Thyroid brought on by Lupus so that is covered for free prescriptions, I am grateful for that...
Good luck its a long road but hopefully these boards will help with the journey
With love
michelle