Finally a diagnosis

cutieclaire

I just want to say a huge thank you to every for your support. If it wasn't for you guys I don't know what I would of done.

I have been to Rummy today and finally been diagnosed with AS. Even though this isn't very nice, a diagnosis has made me feel a bit better as been waiting since October 09, They are putting me on Sulphazine?? (I think thats how u spell it) and will be monitored every 2 weeks with the rummy nurse.

She has also uped my steriod medication and she has explained that even though bloods arnt indicating rhematoid factor I still have it!!!(negative factor)

Well, just thought I would say thanks and chat soon.

xxxxxxxxx Love Claire
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dreamdaisy

Hello Cutieclare! I'm sorry that it's AS but at least you have a name for it - I always think it helps to know what you are facing/fighting/coping with. I have been on Sulphasalazine for ages, it's part of my battle against Psoriatic Arthritis or PA for short. One noticeable thing about it, it turns your wee a really orangey-yellow colour, think Magner's cider thro an orange filter and that's it! I've had no side effects from it and you are allowed alcohol with it, if that's your thing. The blood tests are a pain, but they're there for a reason which is liver health, I think, or it may be kidney health, I can't remember. It should work well with the steroids - or at least it has for me. Finding the right combination of drugs is time-consuming and frustrating but it's lovely when you do. Take care. Dreamdaisy

ironic

Hi Claire, Really glad you got things moving, I know you were fed up and down. It is a relief when you know what you have. Hope the meds work for you. Lv, Ix

wibberley

Hi Claire,

Well at least your symptoms have a name now!

I'm also on sulpha and so far, so good. Yes, my wee glows in the dark too!

Lois x

woodbon

Hello, I'm glad you've got a diagnosis, even if it isn't exactly what you want, you will know what you'r fighting and can have the correct medicaion to help you.

I'm waiting for a diagnosis, they keep changing their minds! :roll: I'm going for an ultrasound next week, can't remeber the date. I'm hopeful that they will come up with something or other, but I don't know when they will tell me as my next rheummy appointment is not until August. :shock: Never mind!

I hope the tablets soon start to make you feel better and you will be able to put it to the back of your mind a bit.

Love Sue

tillytop

Hi cutieclaire
Sorry about your AS diagnosis - but as someone else has said, at least you know what you are dealing with and can begin to move forward. I have taken Sulphasalazine in the past - other than the orange wee which others have mentioned (!) there were no side effects after the first few weeks. You may find, as I did, that you feel rough to begin with, until you get used to the drug but I took it for years after that with no problems at all.
Good luck - hope you will now get the support you need from the rheumatology dept - and that the drug gives you some relief.
tillytop

speedalong

Hi Claire, sorry you have AS, but as you say at least you now have a diagnosis and can move forward with your treatment.

Let us know how things progress.

Speedalong

skezier

Hi Claire,

Glad they have found out whats going on there for you. I sometimes think getting a name helps somehow to understand whats going on with you. I really hope the sulfa and the preds will help you soon and please let us know. Hope your ok in your self there and fingers crossed you soon start to feel a lot better. Cris x

dorcas

Hi Claire!

So glad you have your diagnosis ok...no-one wants AS but as others have said it does help to know what it is and then you can understand how the disease works and what to expect.
Means too that you've got the meds sorted out!! which is great news as you were soooo worried about coming off the steroids and the increase in arther symptoms again.

Hope now that your symptoms respond to the new treatments and that you can think more positively about the work issue (June isn't it when you go back?) A wee bit of advice...contact Jobcentreplus asap and speak to the Disability Employment Adviser to get an Access to Work Assessment. Don't just rely on the new 'Fit to Work' GP note to provide your employer with advice ...as the employer is not obliged to follow it!.

Have a look in the Publications and Resources section here on the website...it has lots info on seronegative arthropathies (which is what AS is) helps to know more about the disease!

happy for you Claire after all you've been struggling with to finally get a diagnosis.


Iris x

frogmorton

Hi Claire

Bet you feel weird!!

a diagnosis....I am pleased for you - I always think fear of the unknown is the worst thing eh? At least you can get yourself informed now. Even if it isn't the best news in the world at least it has a name and some element of predictability.

Dont forget we are all here for you while you get your head roundi it.

Love

Toni xx

bertyboy

its good to know what you are contending with , yes it comes as a shock at first and might be very scary but we are all here with you , with hugs or an ear for a moan , and advise if possible xxxxx

dreamdaisy

Hi. I remembered some more info on sulphasalazine last night. Initially it can cause bruising but that does go after a few weeks. It can also stain soft contact lenses yellow - it heap powerful stuff! I had the bruising, chiefly on my legs but I don't get it now, at least not from sulph! I do from the oral steroids but that's another story. I don't wear contacts either but if you do, you may need to re-think. Regards, Dreamdaisy