[Reggie]

Last week I let you all know how unwell I was with the return of CNS symptoms. As expected the Drs put me in hospital and treated with high dose methaprednisone. After much discussion,they do not want to give me another round of cyclophosphamide.

They are reasearching about the possibility of giving me Rituxan again after 3 months. None of the 8 Rheumies have every given Rituxan so close together and they are not sure of the effects.

Has any one had this treatment so close together. If so what was the out come, did it work for you?

Does any one know what happens if rituxan doesnt work, are there more options, if so what are they. I feel like I am running out medications, and there is nothing left.

Peta

 

[LolaLola]

Peta, I do not know the answer,just wanted to sympathise with you. I am sure someone will know.
x Lola

 

[Lily]

Hi Peta,

I'm glad the pred pulses have helped you to feel a little better. I don't know anything about having the Rituxan so close together so not much help there. But I just wanted to say I hope your docs can source some info on it and have you feeling better soon ((((((((Peta))))))))

love
Lily

 

[lazylegs]

Hi Peta,

The closest together that I have heard is 6 months. If your doctor is really considering it he may want to contact one of the places that did the studies to see if they tried it any closer.

I hope things stay ok for awhile.

Take care,
Lazylegs

 

[Zoi]

Hey (((((((Peta)))))))) :hugbetter:

It's good to hear you're feeling better after the pred pulses! :thumbs:

Don't know much about rituxan given so close together, but I remember my docs talking about giving it to me again in September (about 3-4 months after the original two doses) and discussing whether that might be problematic since it's normally given again when one's b cells start returning; so at least 6-12 months from the original doses... They couldn't find much in the literature on the subject I think, but came to the conclusion that it should be ok. I didn't get it at the end, but not for that reason (I'm allergic to it and they decided that the risks re the allergy outweighed any potential benefits in my case). Docs really did seem ok with my having it earlier than usual though after discussing it...

I know the feeling you're talking about, the running out of meds and nothing helping feeling... It's awful and I'm so sorry you're going through this.... However since rituxan worked for you once before there is no reason to think that it won't work for you this time!! And if doesn't there is always pred pulses, IVIG, plasmapheresis (even autologous bone marrow transplant might be an option for some people)... But how about you deal with all that if it comes to it and until then focus your energy and your thoughts into rituxan working and you feeling better?!!

Sending you all the hugs I can muster and keeping my fingers, toes and eyes crossed that rituxan will help you feel better very soon :grouphug2: :grhug: :goodvibes: :goodvibes: :goodvibes: :fingers:

Hang in there Peta!

:foryou:

Zoi

 

[Joandublin]

Hi Peta

I moved your thread to Medications and changed the title so that others with any advice or experience about the drug might have a better chance of spotting it.

I hope other members can help. Im sorry to hear that your options are dwindling but glad the pred burst helped. Its good that your doctors are researching this as they will have wider access to case studies than is represented here on the Forum.

Please let us know how you are doing. Im really glad to hear that you are feeling a bit better.

Lots of love and strength
Joan:rose:

 

[Raglet]

my treatment regime is dependent upon my B cells. Rituxan kills off the B cells, as I am sure you know, so unless your B cells have returned, then I am not sure what the rituxan would be treating.

This is definitely a question I would ask the doctors if they want to give it to you again. Personally I would not do it unless my B cells had returned.

best of luck with it all

raglet

 

[flutterbye]

I don't know about rituxan every three months, I have it every six months (coming up for two years now and due for another treatment) which works really well for me. From what I understand it may have a cumulative effect, so benefits can increase over time, that would be how I would describe it for me ceretainly. (I have still had the odd flare which required either iv or high dose oral steroids) but it has changed the baseline of lupus activity.

I hope that the steroids have helped at least a little, and that the docs will decide on the course of treatment for you soon, I can understand what a horrible situation this must be for you to be in, and I hope that things will be improving for you soon.

Very best wishes xx

 

[raggedyann1]

Peta,

Have your doctors discussed with you any of the clinical trials that are ongoing? I ask because there are a couple of other treatments for lupus that are in the later stages of trials. I know the CNS component may rule you out but I haven't investigated too closely the requirements for the trials since I am so "unique" I will never fit the criteria for drug trials.

If the trials are not possible please know that there are new medications on the horizon and if you are feeling up to it you might research them and see what stages they are at right now.

Thank you for keeping us up to date.

Take care,
Karen

 

[Reggie]

Thank you everyone for your kind words and support over the last week:wink2: Now I am feeling better after the methaprednisone, at least I can function enough to look after my two boys who are 5 and 7 years old.

I am now in a more positive frame of mind and am taking each day as it comes. I wish everyone lots of love and hugs. I could not have do none this without all the support you have offered.

Peta

 

[applesauce]

I got an initial dose of 4 in 4 weeks, then one 6 months after that, and another a year after. They're thinking of doing another couple, two weeks apart now.