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I can only be myself
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First of all, I want to say sorry for not being around for a while, everything's been very hectic here recently.

To start on a happier note, I passed my first year of uni :) after a bad year, i was surprised, and got a lot better marks then i was expecting by far.

Now for the dismal bit.

I started to flare minorly back in january after getting meningitis, but in the past few weeks it's been getting worse and worse. My face is covered in skin lesions, joints all swollen and painful, mouth full of ulcers and I'm so tired, I just want to go back bed.
Anyway, saw my doc yesterday, and she's changed my arava to cellcept starting at 500mg daily to increase by 250mg every 2 weeks until i hit 2g. Not sure what to expect on this med, any ideas will be much appreciated.
I now have about 3 months to recuperate and try to bring it back under control before starting my second year, so thankful I dont have to do any resits.

As I mentioned a while ago, my mum's been diagnosed with terminal cancer. Yesterday she went into the local Hospice as she's been suffering with a lot of pain, so they've taken her in to see if they could sort it, and gives us all a break. However mum's spirits are still as good as ever, but if we didnt laugh we'd cry. The cancer's spreading through her skeleton but doesnt seem to have got to any organ's yet.

Though it's hard work, we're all sticking together and coping, just, we'll get there in the end. :)
 

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Hi,

Sorry to hear your having such a tough time of it all at the mo.
Hopefully your treatment will have an effect soon and you start to feel a bit better (although I'm fed up of saying that because I think most of the time we all feel rough) My thoughts are with you regarding your mom too, I lost my Mom 4 yrs ago to this terrible disease Cancer and its just awful, always here if you want a chat anytime.

Beci
xx
 

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Hi Vikki,

Glad to hear you passed your exams :) Well done!!!

I really hope that the Cellcept works wonders for you. I'm afraid I don't know a thing about it but wish you the best of luck on it, it sounds like you really need a break.

It's good to hear that your Mum is keeping cheerful and that you can all still have a good laugh even if it must be a terrible strain on you all to see her suffer like that. You sound like a really close family and I think that is the best anyone can wish for at a time like that.

sending lots of hugs to you all,
:grouphug2:

Katharine
 

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Hi Vikki,

Back when you were wondering if you would even be able to go to school. Now you finish better than expected. Great job. Enjoy your time off.

Sorry to hear your Mom is in so much pain. Hopefully they can ease it some.

When I first started on Cell Cept it made me very dizzy and gassy. The dizzy spells subsided after a couple of weeks. After being on it 3 years I started getting acid reflux so the doctor gave me Protonix and that took care of it. It took about 4 weeks before I started seeing any benefits. I hope it works for you.

Take care,
Lazylegs
 

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congratulations for getting through and passing your first year at Uni.8) I can remember when you had to decide which uni to go to. Hope they can get your flare under control with your new meds, also sorry to hear about your mum. Is mum just at the hospice until they can control her pain for her and to give you all a break and breather.
 

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Vikki, i hope the meds do help you, and congrats for passing by the way, sorry about your mum, it all as a pact on you doesnt it, i know,

vikki its nice to see you post, but please look after your self, you are doing so well, but please dont over do things hun.

big big ((((((((((((((((HUGS)))))))))))))))))) Lin xxxxxxx
 

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(((((((((((((((((((((((((((Vikki))))))))))))))))))))))))) :hugbetter:

First of all congratulations for passing your exams and finishing your first university year!!!! :thumbs::bigsmile:

I'm sorry to hear about the flaring bit though... :( Doesn't sound fun at all...

Cellcept is a very very good med, pretty new but very effective in bringing lupie problems under control. It's incredibly succesful with lupus kidney problems, but is widely used for other lupus-related things too..! It's an immunossupressant that was originally used for the prevention of rejections in organ transplant patients, but has proved useful in autoimmune disorders as well... The marketing company is Roche and they have a very nice site with a lot of information on cellcept. Here is the link:

http://www.rochetransplant.com/product/cellcept/

I'm really, really sorry to hear about you mum's pain. I hope the hospice people can help her with that.

Both you and your mum sound like incredibly strong, incredibly positive people Vikki! An inspiration for us all!

Hope the cellcept helps you feel better soon,

Sending loads and loads and loads of hugs your way :grouphug2::grhug:

:flowery:

Zoi
 

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Hi,

Firstly, congratulations on passing your firs year. You are one tough cookie:dancing:.

Secondly, I am very very sorry to hear about your Mum. What terrible news, and how difficult it must be for you (and all your family). I had missed her presence here, but had no idea she was so ill.

I'll be thinking of you both.:pansy::rose::pansy:

X C X
 

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I can only be myself
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Discussion Starter #9
Thank you for all you're replies.

Mum's finally out of the hospice and has now taken to snoring on the couch.

i wish the drugs would kick in sooner, as the pain's getting to me lots now, no matter how many painkillers I take. Doc's won't give me anything stronger, as I have apparently tried everything.
 

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Congrats on your schooling. You worked very hard and deserved to complete with flying colors!

I am sorry about your Mom. It is a very hard and difficult situation and very stressful. I am sure that your pain level is a result of your stress.

I will keep your mom and you and your family in my prayers through this difficult time.

Sending hugs your way.
 
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