[Christine UK]

Hi Saw my Consultant today and this is our next plan of action...
If the PCT approve the Ten Thousand pounds its going to cost...because its Licenced to only RA lupus patients dont automatically get it..

Anyway need throat swab blood screening etc etc...

just wondered who has had this and your views..

many thanks xx

 

[lazylegs]

Hi Christine,

Rituximab has been great for me. I don't go into remission but it does slow the progress of the disease with few side effects.

I did a quick review on the medication forum. Maybe this will help.

http://www.thelupussite.com/forum/showthread.php?t=73495

Good luck getting the funding. I am presently in an insurance battle for my next dose so I understand.

Take care,
Lazylegs

 

[mooks]

Haven't had it personally, but met a lady in the day unit who had it and she said it changed her life! Really hope it helps you out too. My rheumy wants to get it for me but PCT won't approve it yet...not until ive tried EVERYTHING else..grrr. Good luck with the PCT and i really hope it works for you xxx

 

[karen.w.]

Hi christine

just to wish you lot's of luck getting approval for the rituximab..my consultant has just mentioned this too so I will also be looking for more information on it before I make my mind up I didn't realise it was so expensive I didn't ask

please keep us updated
take care
love karen x

 

[Christine UK]

Thanks for your replys..

I do have to say i am only getting good reports back from people..

I seem really nervous about it...silly i know...

I dont think i was as bad as this when i had the cyclo....

anyway we will see what the PCT says...once again thanks x x

 

[Fairy]

Hiya,
I've had two rounds of the stuff, and it's fair to say it hasn't changed my life yet :hehe: I live in hope though, and it hasn't done me any harm either(although I am stuck on antibiotics). It was pretty easy to have, and I had very few side effects. I hope you get it, and it works for you.

 

[flutterbye]

It has been a good drug for me, not a cure all but has definately had a postive effect and I am very gratefull for recieving it.

Hope geting it approved for you is not to prolonged, I think it is being approved for patients on an individual basis a good deal quicker than it was a couple of years ago, once other treatments have been tried.

Best of luck with it!

 

[stef]

Hi I was diagnosed with SLE 3 years ago and with Lupus Nefritis this summer after having my baby in April. I was leaking loads of protein throughout the pregnancy and continued doing so after the baby was born so I was sent to UK for a biopsy and the Nefritis was confirmed. They immediately gave me the first dose of retuximab and the second dose 3 weeks later. After the treatment my body went haywire!! My blood pressure shot through the roof, my cholesterol level shot up too, I became very aneamic and very swollen due to water retention. The doc said these symptons resulted from a combination of the nefritis and the treatment and I was given loads of meds to control everything. It's been 5 months since the treatment and I'm feeling very well now. I have hardly no aches and pains at all, and the only persisting problem I have is the water retention! I have to travel to the UK every month for a check up and at the moment my b-cells are still absent, but there's still no improvement to my kideys! The doc says its still early days so I'm crossing my fingers and hoping for the best!

 

[Clare.T]

Good Luck ((( Chris )))

Clare

 

[lin]

(((((((((((Chris))))))))))))) good luck hope they let you have it, seems to be helping ppl anyway lets keep fingers crossed


luv Lin xxxxxxxxxx

 

[hattycat]

hey
I've just got the dates through for my first treatment of the rituximab...I'm really nervous about it too, and have only found good reports.

Hope you get your approval too (((()))))

 

[lazylegs]

Good luck Vikki. What dates do you go in for your infusions? I go on Wednesday :spin:

Take care,
Lazylegs

 

[hattycat]

first one is 9 march dunno whether to be excited or nervous, bit of both really :S

 

[Lily]

Good luck to all of you :luck: :hug:

love
Lily

 

[Christine UK]

Vikki bless you hun i know how you feel...hugs and positive vibes x x x

 

[lin]

sending you both hugs ,and good luck xxx

 

[sheira]

Hi - I had my first Rtuximab on March 4th - thankfully I am at Halifax Hospital where Rituximab is well used as it was founded by Dr McGonagle there a few yrs ago albeit i am only the 6th person in halifax to have had it.

I too was really nervous. I had 600ml of steroid before the drug was administered but suffered severe allergic reactions 3 times and in the end had to have it at 25ml an hour in conjunction with steroids and hydrocortizone. I was in hospital for 3 days having it. After I was severely tired and my canula became infected.

Had the 2nd dose on wednesday - had no reaction at all and it took only 4 hours. I am shattered though and my blood pressure is really low and I feel sick all the time. Hoping it works as i am in severe pain with joints at the moment.

s
x

 

[lazylegs]

Hi Sheira,

Not all people react the same way, but Rituxan just wipes me out for awhile after having it. Once it passes I feel like a new person. Rarely do I have any joint pain unless I am flaring.

I am worried about your low blood pressure though. Is the doctor keeps an eye on it?

Take care,
Lazylegs

 

[Sage Hen]

Best Wishes..for positive results with the Rituxan.

I will be cheering for you..Chris.

Love,
Sandy

 

[Christine UK]

oh sheira...i too hope their watching your BP...

Had an appt last week with my rheumy but had to cancel because of this tummy bug...so no doubt will find out at the next apt....