[Fairy]

Hiya,
I'm sure this has been asked before, so I'm sorry for asking you to repeat yourselves... Subject to a second consultant agreeing, I'm going to have my first dose of rituximab in a week or so, followed by another a fortnight later. It'll be combined with a small dose of cyclo. I'm a bit nervous because most drugs don't tend to agree with me, but I'm going to give it a go. I just wanted to know what other people's experiences of it is?

Cheers

 

[lazylegs]

Hi,

Prior to having Rituxan I was very nervous. It was all for naught. The only reactions I had were a slight temperature, chills and sore throat during the first hour. Aspirin took care of all the symptoms quickly. My blood pressure jumped around a bit but was always in an acceptable range. During successive treatments I have had no reaction at all. Afterwards I always go through a period of extreme fatigue for a few months.

Rituxan has really helped me. It turned around my cognitive issues and all the normal Lupus issues. The central nervous system issues were only helped slightly. My quality of life has vastly improved.

Good luck with your infusion. I hope it really works for you. Some people see immediate effects, the first time it took almost 4 months. The last time took about 1 month.

Take care,
Lazylegs

 

[IBDOROTHY]

i wanted to wish you thebest of luck with your treatment. i had my first iv on the 15th of april and the 2nd on 6th of may. i did not feel "real" bad after the 1st until the 2nd week when i developed problems with my sight, speech and co-ordination. i phoned the dr who immediately scheduled a mri which was clear and the problem resolved itself in a couple of days. the 2nd treatment is still kicking my behind. the fatigue is still a problem and i am now taking 100mg of provigil to help with that. i have dropped the predisone from 40mg (since a bad flare in march) to 25mg as of today, with hopes of being down to 10 around the end of august or sept. my blood work did not reflect any improvement "b" cell or ana wise. however, i have noticed an improvement in some cns areas. my "word finding" has gotten better and i dont stumble or search for words as often or hardly at all now. that is really it. please beware of the fatigue and make arrangements or allowances for it just in case.
i wish you the best of luck with you treatments and the infusion wasnt bad for me just kind of a long day. i was nervous but really mine just added up to sitting in a lounge chair for 6 1/2 hrs .

 

[Raglet]

Just to be different, I had a severe reaction ( very bad asthma - I dropped my oxygen sats) and the first dose had to be abandoned. My second dose was done in ICU. I have recently had another two doses that we did better with - we really focused on getting my asthma as good as possible and they gave me 1000mg iv steroids before each treatment, so my asthma wasn't as bad but still needed lots of nebulisers to get me through. I am allergic to mice, and the rituximab antibody is half mouse, half human. I am looking forward to the fully humanised version.

most people don't have this sort of reaction though, I was just unlucky.

raglet

 

[Fairy]

Thanks for the replies. I'm feeling better about it now; I'm not asthmatic, or allergic to mice so hopefully I won't react that badly. I've got my appointment with the second consultant this afternoon, so I'll find out more about it then, and then I'll try and forget about it till next week.

 

[specialk16]

Hi Fairy !

This is my second round of Rituxan. During my first round which was back in December of 2005, I had little to no problems.... plus I lived a good couple of years symptom free. This second round, I haven't been as lucky. I definitely have had some adverse reactions to the drug. But don't fret. Everyone responds differently. Just do as the Dr. says and you should be fine. What are they giving it to you for? I know it hasn't been FDA approved for Lupus yet. I am treated for ITP.

Hope all goes well. I am currently being treated for it too. My last treatment is on Friday so I am keeping my fingers crossed.

Hugs and talk to you soon!:wink2:

 

[Fairy]

I'm having it to treat lupus. It's not licenced for lupus yet here (the uk) either, but you can get it if you've tried other treatments first, and two consultants agree that it might be helpful.

I got my appointment letter through yesterday, and it says they want me to stay overnight, which I'm not very impressed about. Hopefully they're just being extra cautious, but if it's all fine I'll be escaping at the earliest possible opportunity!

 

[lazylegs]

Hi Fairy,

Staying overnight is most likely a precaution. Doctor's have found that if you do have a reaction they can stop temporarily and then start up again more slowly. My first one took 6 hours, hopefully yours is a short one also.

Good luck,
Lazylegs

 

[Fairy]

Well, it was all ok - they kept me in, but it seems it's routine here to give the rituximab on one day, then the cyclo the day after, so there was no chane of escaping early!

Roll on two weeks time

 

[Lily]

:thumbs: I'm glad it went well for you and I hope you will get a great deal of benefit out of it :hug:

love
Lily

 

[applesauce]

I hope it goes well. I got great results from Rituxan, including not-many-side effects.

 

[lazylegs]

Hi Fairy,

Glad to hear that it went ok. I don't get cyclo so I go in one day and then again 2 weeks later.

I hope the fatigue isn't too bad for you and those B cells die quickly.

Take care,
Lazylegs

 

[Fairy]

Just to let you know the second dose went well too. Apart from a little queasyness from the cyclo, I had no side effects at all

Now just keeping my fingers crossed it works!

 

[lazylegs]

Hi Fairy,

Thanks for the update. I will keep my fingers crossed for you too.

Take care,
Lazylegs

 

[applesauce]

My fingers are crossed too! I just got home from my rituxan #1 (since two years ago, that is) and it went about the same as yours, queasiness and then nothing. And I drank a smoothie.

 

[AmandaB]

Hiya,

I've had Rituxamab & Cyclo but not at the same time. The first time I had Rituxamab (Dec 06) I came out of the hospital full of beans and ready to take on the world! In August 07 I had Cyclo which really didn't agree with me - I felt it affected both my symptoms (got worse) and my quality of life (had to take time off work).

I then had a second round of Rituximab in Dec 07 (New Years Eve!) but didn't feel as great afterwards - was very tired. I'm now about to go back for blood tests where they are then going to decide if I am to have Rituximab or Cyclo again. Not looking forward to the prospect of more Cyclo but if it has to be done.....

Amanda

 

[Raglet]

hi Amanda

When cyclo (cytoxan) is given with rituxan, it is not given to treat the lupus but rather to help the rituxan work by preventing us making antibodies against the rituxan. At least that is the theory, who knows if it works ! It is a much smaller dose of cyclo than is usually given - I only have 500mg cyclo after rituxan, whereas if I am just having cyclo on it's own I usually have 1500mg.

Some doctors use the rituxan/cyclo protocol, some don't.

hth

raglet

 

[KitKat]

Hi,

With all these things there are always gonna be bad cases because these are major chemicals you are putting into your body but when they work they are brilliant!

But I just wanted to give you a word of warning. My sister had a really nasty reaction to Rituximab. She was having it for her Rhuematoid Arthritus. She had a bit of a reaction after her 1st dose but a day after her 2nd dose she became very ill and almost died. Praise God she came through it but she has been left with permenant nerve damage because of her bodies reaction to this drug.

This is a very rare reaction - In the 1 million people who have used this drug across the world only 6 people have reacted in this way but 4 of them were being treated for Lupus. So please make sure you carefully weigh up for yourself whether the risks are worth it for you.

I really am a firm believer in not worrying about all the side effects but I dont want another family to go through what we have been through in the last month.

K