[Julie Paynter]

Hi My name is Julie

I was diagnosed with Lupus in March. Just been given my second lot of medication which is Mycophenolate (CellCept). :worried:
Yes i have triedness, a numb leg.. And sometime si just have to given in and
sleep.

Really worried about taking the new medication, the Rheumatology nurses don't give much away.
But once i'd been to my local GP for the medication he warned me and said they would make me ill :sad:..

I need support help and to share experiences with others.

I found this site and felt a sudden relief and excitement i wasn't alone.

I hope over time i to can become support and help for others.

Julie

xxxx

 

[Viridian]

Hi Julie!
Just wanted to say WELCOME! and that although I cant contribute to any advice on your meds, etc. I can say that there are others here that are amazing and I'm sure will be able to help you.
And dont worry or feel guilty about 'giving in and just having to sleep'. You have to pace yourself and rest!
Take Care.

- Viridian

 

[Katharine]

Hello Julie and welcome

I'm afraid I don't have any experience of cellcept so can't help you much there but I think that meds are pretty individual. Some people will react badly to them, some won't.

I take imuran which a lot of people get quite nauseous with to begin with - I didn't.

There may be some tips for avoiding some of the nasty side effects and I'm sure some of the others will be along soon to say what they are.

You are definitely not alone and I think you'll find that the site is very supportive and that you'll make many friends here.

good luck on the cellcept and I hope it works well for you,
Katharine

 

[Clare.T]

A warm welcome to the forum Julie
I am sure you will find it a great source of information and support. Having lupus can be a very lonely business and even with supportive famiy and friends there's a limit to how much they can help.
How is your lupus affecting you? I suppose you are on other medicines already.

Cellcept has helped many people and you will find posts about it on the medications section. You can of course ask about it on your own behalf.

What's the matter with these doctors and these minions ? Why can't they take a minute or two to explain benefits and possible side effects and why worry people with dismal talk of making you more ill than the lupus already is. So negative and unhelpful. I have zapped both of them with my Clare.T (TM) tazer.


People vary very much in how they react to medicines, both benefits and adverse side effects. Initial side effects often wear off as the body gets used to the drug. I think Cellcept is like many others - you start at a lower dose to see how it goes at first then work up. There's something about taking cellcept with and without food.

Bye for now

Clare

 

[LolaLola]

Dear Julie, I was sorry to hear you have been struggling on alone. A Big Welcome here. The Members are all very good and between them have many years experience. I am not on Cellcept so can't help with that,but you can gladly pick my brains anytime(you may need a magnifying glass to find them though).

X Lola

 

[alisiajo]

Hi Julie. I am on cellcept. It is an amazing drug. It's like chemo but non of the side effects. It did make me stomach ill and very faint if i didnt take it with food. But you will learn how and when is the best time for your body to take it. It isnt nearly as strong as cytoxan so as of right now i'm not on it. I've been begging the doctors to go back on it though because i'm sick of the cytoxan. Good Luck!

 

[Julie Paynter]

A warm welcome to the forum Julie
I am sure you will find it a great source of information and support. Having lupus can be a very lonely business and even with supportive famiy and friends there's a limit to how much they can help.
How is your lupus affecting you? I suppose you are on other medicines already.

Cellcept has helped many people and you will find posts about it on the medications section. You can of course ask about it on your own behalf.

What's the matter with these doctors and these minions ? Why can't they take a minute or two to explain benefits and possible side effects and why worry people with dismal talk of making you more ill than the lupus already is. So negative and unhelpful. I have zapped both of them with my Clare.T (TM) tazer.


People vary very much in how they react to medicines, both benefits and adverse side effects. Initial side effects often wear off as the body gets used to the drug. I think Cellcept is like many others - you start at a lower dose to see how it goes at first then work up. There's something about taking cellcept with and without food.

Bye for now

Clare

Hi... Thank you all so much for welcoming me.. Been reading through the Medications Board, very hepful.

Next question how do i get full access to this site etc etc..

Julie

 

[Clare.T]

Hello again Julie

how do i get full access to this site etc et

I'm not sure what you're thinking of. As a registered member you already have full access and can use all the facilities like the PM ( Private Message) system and everything else . The main site for information is www.thelupussite.com - click top left.



Clare

 

[Julie Paynter]

Thank you,

Was finding it hard to post reply's will get used to it.....

I'll be on quite a lot in the evenings and during the day ...reading/learning and posting.

I finally feel at rest and not alone.. Its really hard sometimes my partner understand's well trys to.
We got marrid 20 sept so i guess he must. :hehe:

But close friend's don't i can't put my finger on it but they brush it off, at first i thought it was because they don't understand.
Some have theroy's for this which i find quite distrubing.

But i'm here now and thats all that matters.

 

[arwen]

hi, sorry to hear your not well, can't help with the meds as i dont take that kind, was diagnoised 3 years ago, sleeping as and when i need to takes getting used to, but it's part of staying well, i only recently found this site, it does help to talk to other people, with the same illness

 

[Julie Paynter]

Oh defo

Today i feel happier about everything.... I'm no the only one.....

I was at a Legs Bums and tums class a few weeks ago.. and we were doing some floor excercises ..and because my left leg is numb and behaves in a different way and i have some/ little control.. The young lady taking the class asked me if i'd had a stoke..
I said no but felt a explaination would take too long and she'd start worrying about me in class.

At least now i know why i have these things prior to this my doctor said "oh Julie its just your age and getting old. omg..!!!

How fustrating..

 

[KarolH]

Hi Julie,

Welcome to a great place for info and support.

I am sorry your not feeling well and you really need to rest when your body tells you so.

Hope to get to know you better and maybe even chat with you a bit in the chat room.:wink2:

 

[lazylegs]

Hi Julie,

Welcome to the site. Good luck finding your way around. I think you will find some very helpful information.

I have been on Cell Cept for quite awhile now. Initially I was dizzy and gassy but once my body got used to the drug both symptoms went away. I follow the recommendation of taking it on any empty stomach. I suggest you check with your doctor about his procedure if you become ill with something else like a cold. Mine has me drop off the medication for a short time, but not all doctors do.

Hope to see you in chat someday.

Take care,
Lazylegs

 

[squeaky]

Hi

Welcome Julie , just wanted to say Hi and glad you found this site.
Hope you get some relief with your new meds.
Best Wishes
Sue

 

[Clare.T]

Hello Julie

I hope you have mastered the art of reply now There are two main options: either use the POST REPLY options at the top and bottom left of a thread or use the option of QUICK REPLY at the bottom right of each post.
The REPLY with QUOTE is useful at times. It can all be confusing at first.

You wrote

Some have theroy's for this which i find quite distrubing.

Ignorance about lupus is widespread, as is misinformation even when people have heard of lupus. Many of us find it useful to have as a handout or letter, a brief description of the disease and explanation of what it is and what it isn't.
Most of us find other people are not really interested beyond the most superficial level of curiosity and politeness and in general we tell only those who need to know. Those who are concerned and wish to help rarely know enough to be really helpful and can understand only so far.
Then we have to deal with those painful people who have 'cures' and remedies of all sorts.

Bye for now
Clare

 

[pennylp]

HI there Julie,

Just wanted to send you a warm :welcome:, and to say I am glad you found this site... It sure is nice to talk to people that have the same aches and pains as you have... I hope you feel better soon...

:love2: Love Penny

 

[Jesse88]

Welcome, welcome. I'm sorry you have to be here, but now you know you're not alone. You have lots of company here!

Someone should slap your doctor for telling you the cellcept will make you sick. He has no way of knowing that for sure and to suggest it will can only make it more likely to be self-fullfilling. If you tell someone a med will make them sick, it makes them more likely to get sick. Believe me when I tell you I've read of many others who have been on cellcept with great success and no stomach problems. You could be one of them.