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Discussion Starter · #1 ·
Hi! I was diagnosed with Lupus yesterday so, although I had read all the very informative posts prior to that, I thought I'd now register as a member.

I have mixed feelings about my diagnosis. In some ways it's a relief because I've been unwell for a year, passed from pillar to post and was fed up with people telling me there's nothing wrong when clearly there is! My appt with a Rheumy finally confirmed a diagnosis.
But now I have the diagnosis, it's a little scary as I feel like I'm entering the unknown! However, I do feel happier knowing I have so many friends out there to offer advice, support and encouragement if I need it :)

One immediate question is re prescription charges for those members based in England. Do you usually buy pre-payment certificates to cover the cost? I've been prescribed Hydroxychloroquine by my Rheumy, plus I have other unrelated meds from my GP but not necessarily longterm. I'm unsure whether it'll be worth buying an annual cert or not. Also, I've been told to get my eyes tested twice a year to check for side effects. Presumably, we don't get any help with those costs? Although I've recently had to give up my job, my husband still works so we wouldn't qualify for any benefits.
Any advice would be appreciated.
 

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Hi and welcome to the forum, as you have already noted, it is a great place to find info and support. When you are diagnosed you can experience a rollercoaster of emotions. Relief is natural, as we want to put a name to our illness, but that brings with it a level of uncertainty. Give yourself time to adjust.

It depends on how many meds you have as to whether a prepayment cert is cheaper. We still have to pay for eye tests as well unfortunately.

I hope the plaquenil helps.

Join us in chat sometime!

DEb
 

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Welcome to the site.

Most of us had mixed emotions when we were diagnosed also. They can be all over the place. You can go from relief, to scared, then sad, determined and so on. Don't forget we are here if you need us.

Take care,
Lazylegs
 

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A warm welcome to the forum sme although I am sorry about your diagnosis.
I am sure you will find the forum an invaluable source of support and useful information.

The eye tests are not paid for unfortunately, but I am surprised you have been recommended to have them twice a year since they are not usually regarded as essential, the eye risk being so low at the recommended doses. It is certainly a good idea to get it done at least once a year for one's own satisfaction and to have a baseline test to make sure there are no pre-existing contraindications. I go to St Thomas' and my doc there didn't seem to think it mattered despite me taking a much stronger antimalarial at max dose for many years.

You should calculate how much your current medicines cost in total to see if getting a prepaid would be helpful. It is usually a tremendous saving.

All the best
Bye for now
Clare
 

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Welcome to the board.

I am sorry about your diagnosis but you have found a great place to hang your hat and get support, knowledge and compassion from a great group of people.

Join us in the chat room sometime.:wink2:
 

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hi and welcome, it all depends on how many meds your on as to pre paying yearly payment which is now around £97 well was when i had to buy them,

i didnt bother when i was first on Plauq, was only as lots of other meds got added, gp told me to. but as now got epilepsy dont have to pay.....

i was told to get eye test every six months to, i just go once a year though.

sorry about your DX, but glad they have found out whats wrong for oyu and you being treated, nice to see oyu here

take care Lin xxxxxx
 

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Hi sme and welcome :)
Yes its a bit scary at first but at least you can now start proper treatment and get it under some control; so thats a positive ;)

I too was unsure about the pre payed prescription charge but for me it was a godsend and Ive saved a fortune. When I was first diagnosed I was very ill and needed quite a lot of meds, so the initial cost of the prepayed card was less than I would have payed for all my prescriptions in the first 2 months; so for me it was worth it.
Take care and I look forward to hearing more from you

Kx
 

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Discussion Starter · #8 ·
Hi again everyone. Thanks for such a warm welcome!
I decided to buy a 3mth pre-payment cert in the end. It cost £28.25 and I already had 4 prescriptions @£7.20 each, so any other prescriptions I get over the next 3mths will be a bonus. Thanks also for the advice about the eye test. The Rheumy told me twice a year, but the leaflet in the med says annually. It also says get eyes tested before starting medication. Would you recommend I do that now rather than later? I think it's just over a year that I had them tested on the high street, but that was just a routine eye test. I did have an Opthalmic consultant check my optical nerves when I was being 'investigated' earlier this year. Tbh, I'm not quite sure what I need to be checked for with regard to taking this med.
 

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Hi sme and welcome :)

Plaquenil patients need to have what is called a visual field test done and also examination of the retina for their checks. It's good to have a baseline one done before or not long after starting therapy and docs differ in what they recommend. They may do a couple tests 6 months apart and then if things are fine (and they usually are) they just do it annually.

Here's some more info:

http://www.medhelp.org/posts/Eye-Care/Plaquenil-therapy-and-eye-exams/show/882157

love
Lily
 
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