Hi, I have SLE and have tried all the usually treatments with limited effects ( only the side effects really)

[73snoopy]

Having just seen a new consultant who is a well known prof in this field, I feel reassured that my condition can be controlled. ( having suffered for the last 4 years it is nice to be given hope!) One of the treatments that has been suggested is Rituximab. Has any one had any experience with this? The other is ciclosporin... Thanks

[Cma9905]

Hi, I have been on and off Rituximab for 7 years now. I have 1gram every 6 months but I know they can go upto 2grams. I go into a day unit and have infusion. It is an expensive drug so it's not always possible for the funding. But if your consultant recommends it, they must think you need it. I had it done about 4 weeks ago, straight after I feel flu like symptoms and so take it very easy. I just take one day at a time. 4 weeks on I feel really good. My lungs are diseased and only have a 50% capacity. They were decreasing quickly which is why I was first put on Rituximab. My lungs have now been stable for the last 7 years. Yes I still get flare ups, but my life is a lot easier because of the Rituximab. Obviously every case can be different but that's my experience with it. Hope every thing goes ok.

[73snoopy in reply to Cma9905]

Hi Cma99, thanks for that. They have said I would go into the day unit to have it too! That sounds really encouraging. It might help with my lungs too. Anxious about it, but 4 years on I am ready to try anything to get my 'old life ' back! Thanks for taking the time to reply.

[MandaM in reply to 73snoopy]

Good luck with it all. I hope you feel better for the treatment x

[73snoopy in reply to MandaM]

Thanks MandaM.... Fingers crossed ,! X

[mstr]

Good luck with it. From what I hear if you are offered it that is great. I hope it all goes well xx

[73snoopy]

Thanks mstr... It makes me feel more optimistic

x

[notoverthehill]

It is best choice I ever made.It is nearly two years since my first infusion and have not had any pain at the same time as I have a flare .I still have problems with hair loss ,skin etc but no pain. Go for it

[73snoopy in reply to notoverthehill]

Ah thanks notoverthe hill. I have quite bad alopecia and skin etc and the methotrexate and plaqunil etc has never help at all. To be pain free would be amazing x

[roobarb]

Hi 73snoopy

It is great to read that you have found a consultant who has given you hope for the future, this is so important as lupus can have so many profound effects on our daily lives & abilities. Do you mind me asking who you see & where? I am always interested to hear about the good Drs who are out there.

I had a course of Cyclophosamide last year after a severe flare. It calmed the severity of the disease down initially. But I felt that the benefits did not out weigh the side effects.

I have recently started Rituximab infusions & found the side effects profile a whole lot better.

I have been told it can take up to 3 months to feel the benefit, so I can't tell you much more at this point. Other than that I have read & heard about many lupus patients who had good results from it. One of these writes a blog called Lupus in Flight, & you can read an over view of her medication experiences in the Cambridge newspaper interview.

Very best wishes. X

[73snoopy in reply to roobarb]

Hi Roobarb, thanks for your reply. It is Prof Gordon in Birmingham. Although it's not that local, it's the best decision ever I have made! I hope you get the results from Rituximab. The side effect profile has been the problem with all the other stuff I have tried. I have either had anaphylactic reactions and gastric bleeds! Hoping that this will not be the case this time. I will have a look at the blog you mentioned...thanks

Best wishes xx

[roobarb in reply to 73snoopy]

I'm intolerant to most meds too, snoopy. Thankfully never had an anaphalactic shock from one though. How awful for you!

I've come across quite a few lupies who are also extremely sensitive to drugs. Do you mind me asking, do you have any food allergies as well, & have you found you've become more sensitive to drugs as your lupus has got worse?

[73snoopy in reply to roobarb]

HI Roobarb. Yes I do have allergies to food as well as most medications!! Oranges give me anaphylactic shock. Interestingly I started to have allergies out of the blue before I was diagnosed, but my sensitivity has become worse as my lupus has. I believe it is all connected?

[Hidden in reply to 73snoopy]

I have something similar.

Do you get any reactions to nuts at all?

Thanks,

[73snoopy in reply to Hidden]

Hi omega, no thankfully I don't have an allergy to nuts.. do u? It's a real problem with all these allergies isn't it? Oh to be straightforward!!

Thanks

[roobarb in reply to Hidden]

I'm allergic to peanuts & almonds omega, & I have been all my life. But had my worst reaction just before the lupus symptoms started, & I believe this could been one of my triggers for the disease. I have since developed numerous intolerances. How about you?

[73snoopy in reply to roobarb]

Yes that sounds just like me too! Hopefully like you say research in the future will reveal all!

[roobarb in reply to 73snoopy]

It must be connected somehow, hopefully research will give us some answers soon. X

[kazp]

You don't have to suffer with it at all, don't let anyone tell you otherwise please !

There are so many treatments out there now that may work, its a long process of finding what works for you. I've lived with SLE over 30 years and I have seen things change so much.

Remember you are not along, but you are individual in what will work for you.

Stay positive and think of what I CAN not what I cant.

Take care

[73snoopy in reply to kazp]

Ah thanks Kazp. It has been a long four years and looking back before diagnosis probably a few years too. It is hard at times when you look at how differently your life has had to change, but at least now I am hopeful of some decent treatment. 4 years of high dose steroids doesn't do anything for the way you look! My twin has DLE and SLE, but fortunately because she lives somewhere else she has brilliant treatment from the word go.... would love to get back to functioning and being like her!

Take good care xx

[kazp in reply to 73snoopy]

You can and will get back your control and function, its your body and only you know how its feels and when its not quite right. Stay positive.

Its taken me a while but I like to think that I CAN and I WILL, the more I do the more I am able to do for longer.

[73snoopy in reply to kazp]

I CAN and I WILL xx

[annie330]

Hi there,

I struggled with control of things back in 2008/2009. I was given cyclophosphamide and had three infusions and it was decided fairly quickly that it wasn't helping so they applied for approval for rituximab which I got. Since then I had it twice in 2010 and then annually usually October time and I have two infusion a two weeks apart in a day unit. I find that I'm tired after it but then have felt better and after last years for the first time since checking my bloods they were either negative or all in normal range. If they think you will benefit then I think let them try for approval and see how you go on it. As someone has said it is expensive so I don't think they would recommend it it they didn't think you would benefit. Good luck

[73snoopy in reply to annie330]

HI Annie330< thanks for your reply. That is good to know. It's really reassuring getting message like that off this site, from people who have experience of the drug. I am willing to give anything a go! Thanks