Rituximab treatment - any advice on what to ask and what to expect.

[HarleySue]

I'm currently on CIMZIA ant tnf aswell as MTX ,folic acid, 3mg prednisolone, naproxyn,mepradec, alendronic acid, paracetamol, codeine, amitriptyline with oramorph as back up. together with amlostin, ramiril & bendroflumethiazide for blood pressure ( adrenal glands removed due to tumour 1996).The CIMZIA seemed to work whilst prednisolone was above 5mg but I am now in constant pain in hands and feet and RA consultant wants to try Rituximab treatment as she feels my RA is not under control and she wants to reduce steroids which I've been taking for 2 years. I've read lots about it and feel apprehensive but desperate because of pain and lack of being able to do anything. Have people found these infusions to be helpful and what side effects etc can I expect ?

[LavendarLady]

Stone the crows HarleySue, can't believe the number of drugs they have got you on. I think your consultant needs to look at them to see if any can be reduced. Not taken Rituximab myself although my consultant nearly changed me onto it a while ago but then decided to leave me on Enbrel with the occasional steroid injection to help. I have 15mg of MTX as well but nothing else apart from pain killers and folic acid 6 times a week. I believe from what my consultant has said that it is dripped in at the hospital over a 2 week period - 1/2 days each week for about 4 hours. He did tell me that the results can be very good with not needing anything else from either 9 months to 3 years!

I don't take steroid tablets as my consultant said I would never be off them again if I did and he wouldn't put me on the tablets, hence the occasional injection which works wonders.

Might be worth trying a different anti tnf. Have you tried any of the others before? Enbrel, Humira etc. See what your consultant/GP says - they are the best people to advise. If you are checking the internet for answers, bear in mind they are not always very accurate!

Good luck. LavendarLady x

[HarleySue]

Thanks LL - I've discussed other anti tnf with consultant but because I have bad reaction to other DMARDS and MTX can only take MTX only 7.5mg as liver becomes toxic she wants to try and get me onto something else without MTX. When I was initially put on steroids I was on 30mgs as I couldn't walk or even move from my bed. They have tried so much but I am now weary of it all. I have even had 4 lots of Depo injections this year aswell. Like you I think my meds are too much but as soon as I try to reduce anything I am in agony. My consultant says my RA is aggresive so I'm trusting her at the moment but would like a second opinion without upsetting the boat. I'm seeing my RA nurse specialist Friday and will ask her advice on drug cocktail now you have confirmed my worry ! Fingers crossed (wouldn't that be nice!) I get some answers.

[Hidden]

Hi there, I've been on Rituximab for three years plus now and am due to have my fourth cycle soon.

It is put through by infusion but everyone is different as to how long it takes, because I've had reactions to other drugs I have to go into hospital for a few day to have the treatment the infusion as to go through very slow for me, mine as taken as long as 12 hours.

the infusion will start off slow and gradually be increased if you don't suffer any side effects. Side effect I usually get are lower back ache,my blood pressure drops and my temperature goes up slightly. I will say though that i am very closely monitored and if I get any of the mentioned side effects or I don't feel well the infusion is stopped for a while then restarted. I have another infusion 2 weeks later and then that's it, they just see how you go. If you still seem to be suffering you can have the treatment again after a three month wait, this is what I had to do and then didn't need anymore for over 12 months!!

This treatment as been excellent for me, it is difficult to know what treatment to try next, if given the choice. I was also on a cocktail of drugs like you but mine have been cut down a lot recently even my MTX as just been cut to 10mg (my request though) and tried many other Anti-tnfs but all failed eventually.

I wish you luck, if you need to ask anything else on the Rituxmab treatment then just ask I don't mind.

Take care

mand xx

[HarleySue]

Hi Mand - thank you for your comprehensive answer, it has certainly put my mind at rest. I was beginning to think I was a freak as they've tried so much to not much effect. I can now go into this new treatment with very positive thoughts and hope I have the same response as you have. We seem to have gone through the same intolerences so I now know there can be light at the end of the tunnel - I'd almost given up !

Love Sue xx

[Hidden]

Hi Sue, I have just read your profile and can honestly say I too have been in the place you are now.

In the very early years of my RA I too found that my life was turned upside down by this awful disease, I was also a person who was never still and never stopped for anythig or anyone constantly on the go. So I know how difficult it is for you in accepting was is happening to you, even more so when all the drugs you try seem to fail or you get a reaction to them, it feels like the world is against you at times. I had a new born baby at the time and although it was extremely difficult at the time I found I gained strength from his needs.

I'm sure there will be a drug out there that will suit you, but you may also have a point in changing your consultant, I did after about 3 years of RA and have been with the same consultant since. My new consultant had an entirely different approach to my first one and since then I have had total faith in him and his choice in drugs for me.

I don't need to tell you to be positive and strong in your RA as I feel you already are but just don't get the lucky break in getting the right treatment to make you feel more positive.

I just want to say that it won't always be this way, although it may not feel like it at the moment but I am speaking from experience, and I still remember times when I thought things would never get better for me neither.

Hang on in there and I wish you all the best in trying Rituximab.

mand xx

[HarleySue]

Thank you Mandy - I'll let you all know how it goes. I have Nerve Conduction tests booked at the hospital tomorrow before seeing consultant on Friday to discuss drugs.

Have a great Bank Holiday everyone

Love Sue xx

[joeyvt]

Hi Sue, I have been on Rituximab for two years now and have found it really helps. I'm in a lot less pain and my mobility has improved.

I'm normally in hospital for just a day at a time for the infusions ... in at about eight and out by four.

The only downside I've found with the drug is that it really does seem to wipe out your immune system for a time. I was never one for picking up colds but now I get a lot more of them. Saying that though, the benefits are huge. The drug also only seems to help the joint inflammation ... I have inflammation of the bowels and lungs and the Rituximab doesn't do anything for that unfortunately.

I'd say give it a go because you've nothing to lose and fingers crossed, it will be the one for you! Joanna x

[HarleySue]

Hi Joanna - thank you for your reply. I have now been told by my RA consultant that my anti-tnf treatment is failing and I will be starting Rituximab in about 2 weeks. I am in so much pain still even though I have just injected with CIMZIA and taken MTX. I understand that Rituximab doesn't always work but I'm hoping it does the trick for me. I'll let you all know how I get on !

Love Suexx

[Hidden]

Hi there

I have recently had my fourth round of Rituximab treatment and it has worked well for me (this was having tried many other things including Embrel). The 2nd treatment worked really well and i would say I was nearly back to normal (whatever that is these days!). The 3rd was not so successful and the hospital are checking with the 4th whether this was because I got a bad chest infection going round last winter which affected many RA patients or whether it is just not working well for me now.

Overall though I have really welcomed the many fewer drugs i take daily and weekly because of the infusions and the effect it has had. I get it on two occasions two weeks apart over a day (usually 8am till about 5pm). I too have low blood pressure so get it more slowly and this time had that done by choice so that I did not feel so wiped for the week afterwards. The care I have had has been excellent. It might also sound bizarre but we also have a laugh in the infusion clinic and it is made a good place to be!

Good luck with it all but I would certainly recommend giving it a try and to help you reduce the cocktail you are now on

All the best

Skippy

[HarleySue]

Thanks for your reply Skippy. I am now waiting for a daybed to be available to start the treatment and am getting really excited at the thought of anything resembling normality again - it's been a long journey.

Fingers crossed I get a good response this time.

I hope it's good news for you with your results of your fourth cycle.

Sue

[Joe40]

Hi, we could be twins lol, I am taking 13 medications, was concerned with you taking cimzia thou with history of tumour, don't want to worry u it may be my specialist but I was taking cimzia by injection fortnightly and started having headaches, I have a meninginoma tumour and apparently should never have been prescribed cimzia, I have a letter from a specialist that states people with or who have tumours should not use cimzia. I too am going on rituximab so hope it goes well for you too

Take care

Joe

[HarleySue]

Thanks for this Joe - I was on CIMZIA for 11 months but had no side effects, it just didn't work for me, even with MTX. The tumour on my adrenal gland in 1996 was removed successfully and I was followed up on an annual basis with no problems to date. I don't drink and have never smoked so not sure why my body is as it is ! I am putting all my hope in Rituximab for some relief from my RA and am just waiting to hear when they have a daybed for me to hopefully start the treatment - I've had the chest x-rays & bloods done so hoping it won't be too long..........good luck to you to

Sue x