New member with question regarding Rituximab

[Belinda]

Hello

I am new here and from the UK, and  have a question regarding Rituximab

I have Rheumatoid Arthritis and also Sjogrens Syndrome my rheumatologist wants to start me on Rituximab.   

I had taken enbrel and methotrexate since 2005 and it was my wonder drug until I had to come off it in 2008 for an operation and due to infections upon infections I have not been able to stay on it,  I am still on Methotrexate injections.

I have done some searching regarding Rituximab and I have to say I dont like the sound of the side effects and if I am being really honest do not wish to go onto this drug.  I really dont believe due to all my infections I get that this drug is really for me but feel just because NICE say it is the guidelines I have to go on it before I try another tnf is why I am being pushed into it.

I have read that it is a risk for sjogrens syndrome patients and the deaths that have occurred is with patients that have it.  (dont want to scare anyone, just needed for you to know my fears).

My specialists tell me that it is working wonders with alot of their patients, but to be fair I have been told other than one other whose Sjogrens is in remission I am their only other patient so they really cannot reassure me that ritux is the right way to go.

I also suffer from Anxiety so the the thought of triggering this off sitting at home after the infusion stressing about those "what ifs" I really dont know what to do. 

I am allergic to sooo many drugs and since diagnosed with sjogrens in 2008 medications that I was originally ok with am now getting sensitive and allergic to them. 

I would appreciate any advice offered.

Thankyou
Belinda
xxxx

[anita]

Hi Belinda,

Welcome!!!

Rituxan (Rituximab) is a 'big gun' treatment and should be left for patients who not only have tried everything else, but have symptoms so bad that this treatment would stabilize them.

You mentioned having RA, but not what type of symptoms you are experiencing (with either RA or SjS) that the doctor are most eager to control.

I would think the doctor would want your infections under control 'before' starting Rituxan and already have a plan in place for when your infections return (which they will).

So you need to ask yourself:  Are you bad enough to risk severe infection/side-effects?  Will the treatment be worse than the symptoms you have now?  How will you anxiety play in this treatment?  How will my medicine sensitivity factor in with Rituxan?

I would have a talk with your doctor about your fears, risks, projected benefits, etc and then weigh the pros/cons. 

Again, welcome.  Please keep us posted.

[Joe S.]

Welcome Belinda. I have never been on Rituxan but my daughter had to stop it before she had her first son. She did not feel the need to go back on it and 4 years later had her second son. I hope that you find a level of management that gives you life.

[Still in the hunt]

Unless your crawling around on the floor, screaming in pain, wondering if your bodys nervous system is going to just give up,, then do not get this drug,, its easy for those who have no experience in it to say go ahead and try it,, I had it, and it really didnt do anything for me, be prepared for a return of infections, this stuff cleans out the immune system, remember its for leukemia treatments and is used for AI off label,, I just dont want to see you in a hospital getting picc lines in for infections this drug caused,, I;mnot telling you to not get it done, but be warned, and its you getting it,, not your rheummy, not your PCP, not he neighbors,, its you, tread carefully

[Belinda]

Hi again

Thank you for your replies.

A little about me to how I get to this position.

I was diagnosed in 2001 with Rheumatoid Arthritis, it was relatively well controlled until 2003 when I lost my mum and I am afraid it sent me into the bigish flare ever.  The disease effective nearly every joint, nerve and tendons and I ended up in a wheelchair.  I cannot take anti-inflammatory because I am allergic to them so pain control is a hit and miss.  For two years I was at a different hospital who said that all I could have was methotrexate, well I knew there was more so got my doctor to change to another hospital and was put on Enbrel and methotrexate.  It was my miracle, took 5 months but they got me walking, driving living life instead of watching it go by at the sidelines.  As I explained had to come off in 2008 due to an operation.  In 2009 I developed a lymph node and parotid swelling so had loads of tests, and was told it could be lymphoma.  Well thankfully it was not but that was when I got the diagnosis of Sjogrens.  I am under a specialist who scans my parotid glands, and thyroid every 9 months as we all know the risk of lymphoma is higher for us.  The sjogrens has damage my parotid, sinuses, and thyroid.  It has dryed my body out and as you all know is hard to deal with.  I have alot of sinus infections, salvia gland infections hence on and off the meds.  So they took me off enbrel and then.

I had a gallbladder operation on 30th June, 2011 i was supposed to be in hospital one day and it was done under keyhole.

Well this one day did not go so well. They discharged me from hospital the day after and I was in so much pain and thought well I am used to this I can deal with pain at home. I got home and still the pain did not even subside with oromorph and in the end I was advised to call an ambulance. By the time they got there my temperature was high, my pulse was 170, yep I meant to put 170. I felt dreadful, so rushed back into hospital. They discovered I had a huge abscess and was put on intravenous antibiotics, 3,250 dose a day. They thought I had also developed the flesh eating disease and so a black line was drawn around my very very swollen stomach and said if the redness goes over it I am in theatre having major op removing the skin and infection. (VERY VERY SCAREY) They swopped to an even stronger antibiotic, thankfully it never went over that line. But one night I woke up with a wet feeling and it was discovered the abscess had burst the belly button stitch open and without going into detail it was gross and I was having to wear a colostomy bag over my belly button whilst this stuff came out of me. I also had alot drained out with a needle under a radiographer. So one night turned into 3.5 weeks in hospital, it was horrendous and very scarey.

The reason I told you all the above is because I was told all that happened because my body is so severely immune compromised and that is why the abscess formed. Now I was off enbrel and mtx nearly 4 weeks before my operation took place and the above happened. What the heck would happen if I had already had the rituximab infusion in me, you cannot take it out, it lasts for along time.

I am thinking and feeling that all I want to do is stay on the mtx injections up them a bit every four weeks, and just see what happens. I know that means I wont get out the wheelchair at pressent but I am only 45 I got a long way to go and I dont want to keep chucking meds in and not thinking about the consequences.


So sorry for the waffling but I just needed to get it all out.

I am not sure what my consultant will say when i tell him I dont wish to go on ritux, I dont understand why I cannot try another TNF drug before I hit the Ritux, because enbrel did work so well for me for three years.

I dont think my anxiety could take any more worrying if I am totally honest but my gold clinic nurse is making me feel a baby about not trying it.

Again sorry for the waffling.

Love
Belinda
xx

[Belinda]

Unless your crawling around on the floor, screaming in pain, wondering if your bodys nervous system is going to just give up,, then do not get this drug,, its easy for those who have no experience in it to say go ahead and try it,, I had it, and it really didnt do anything for me, be prepared for a return of infections, this stuff cleans out the immune system, remember its for leukemia treatments and is used for AI off label,, I just dont want to see you in a hospital getting picc lines in for infections this drug caused,, I;mnot telling you to not get it done, but be warned, and its you getting it,, not your rheummy, not your PCP, not he neighbors,, its you, tread carefully

Thankyou for your very honest opinion, it means alot.

xxx

[Belinda]

Welcome Belinda. I have never been on Rituxan but my daughter had to stop it before she had her first son. She did not feel the need to go back on it and 4 years later had her second son. I hope that you find a level of management that gives you life.

Thank you Joe

xxxx

[Belinda]

Hi Belinda,

Welcome!!!

Rituxan (Rituximab) is a 'big gun' treatment and should be left for patients who not only have tried everything else, but have symptoms so bad that this treatment would stabilize them.

You mentioned having RA, but not what type of symptoms you are experiencing (with either RA or SjS) that the doctor are most eager to control.

I would think the doctor would want your infections under control 'before' starting Rituxan and already have a plan in place for when your infections return (which they will).

So you need to ask yourself:  Are you bad enough to risk severe infection/side-effects?  Will the treatment be worse than the symptoms you have now?  How will you anxiety play in this treatment?  How will my medicine sensitivity factor in with Rituxan?

I would have a talk with your doctor about your fears, risks, projected benefits, etc and then weigh the pros/cons. 

Again, welcome.  Please keep us posted.

Thank you Anita

xx

[Chickpea]

Hi Belinda!

Welcome and I'm glad you've found us although sad that you had to!  Thanks for telling us your story.  I can see why you're cautious about trying a new 'heavy duty/big gun' treatment.  You've been through so much this year and you must be completely worn out with it all. 

I'm also in the UK so I understand what you say about NICE guidelines, although I think there is always room for your rheumatologist to argue for a different medication if he/she thinks it's more suitable for you.  I'm sure your doctors are aware that you've had a really hard time and that you're worn out, both physically and emotionally. 

Could you talk with them again and ask for a half-way treatment, something beyond Methotrexate but not as overwhelming as Rituximab?  Many people here start with Plaquenil and/or Prednisolone and then introduce Methotrexate, and sometimes CellCept/Mycophenolate Mofetil which is an immunosuppressant.  For most that is enough to give their immune systems a kick.  These treatments aren't a cure, but the hope is that they'll slow down the progress of the condition.

As the others have said, you need to weigh up the possible side effects, your anxiety about starting a new treatment, and the prospect of some stability in your condition.  Or even some improvement.  Do you find it helps to write down lists of pros and cons?  Or talk it through with a friend?  Of course we're also happy to act as a sounding board!

Thinking of you - Chickpea

[Belinda]

Hi Belinda!

Welcome and I'm glad you've found us although sad that you had to!  Thanks for telling us your story.  I can see why you're cautious about trying a new 'heavy duty/big gun' treatment.  You've been through so much this year and you must be completely worn out with it all. 

I'm also in the UK so I understand what you say about NICE guidelines, although I think there is always room for your rheumatologist to argue for a different medication if he/she thinks it's more suitable for you.  I'm sure your doctors are aware that you've had a really hard time and that you're worn out, both physically and emotionally. 

Could you talk with them again and ask for a half-way treatment, something beyond Methotrexate but not as overwhelming as Rituximab?  Many people here start with Plaquenil and/or Prednisolone and then introduce Methotrexate, and sometimes CellCept/Mycophenolate Mofetil which is an immunosuppressant.  For most that is enough to give their immune systems a kick.  These treatments aren't a cure, but the hope is that they'll slow down the progress of the condition.

As the others have said, you need to weigh up the possible side effects, your anxiety about starting a new treatment, and the prospect of some stability in your condition.  Or even some improvement.  Do you find it helps to write down lists of pros and cons?  Or talk it through with a friend?  Of course we're also happy to act as a sounding board!

Thinking of you - Chickpea

Thank you Chickpea, I am glad I have found you all. 

I have an appointment this Thursday with my Rheumatologist, my gold clinic nurse made the appointment. 

I am definently going to write the pros and cons downs and also my fears.  I have a feeling I will be in there a long time.

Thank you for the names of some other drugs I could look into, I am still taking methotrexate injections.  Sadly steriods do not work for me they just caused me to have steriod induced cushing syndrome.   I so wish I was not so allergic to so many things, it makes life so very difficult. 

I have to say before what happened in June I would always try what ever medication they suggested but it has scared the heck out of me.

Thank you again chickpea

Love
Belinda
xx

[harrigan]

Hi Belinda - I'm just wondering if your Rheumy is advising you correctly.  I too have Sjogrens (2009) and RA (2010) and have progressed rapidly through Plaquenil, MTX, Leflunomide and Enbrel.  I stopped Enbrel in March and was able to start Cimzia in April, which I inject every 2 weeks alongside weekly injections of MTX. 

I'm due back at the rheumy on 07/11 and am concerned that I will be coming off the Cimzia.  She told me 2 months ago that if the inflammatory markers didn't come down soon she would recommend Ritux.  I'm also concerned about this, but the consequences of uncontrolled RA are also not pretty, especially with heart disease in the family.

Not really sure what to say to you except that you are not alone.  It is a lot to take on board.   I sort of think that at 51 I have a lot of living yet to do and need to do whatever it takes to make that happen. 

Have you thought of contacting an RA charity to check out the legal position with regards to a 2nd anti-TNF? Thinking of you, Ailsa XX

[Cheryl]

Belinda,
I was given Rituxan as a follow-up to chemo treatments when I had non H lymphoma.   I was dealing with side effects of the chemo at the time, but I was never aware of having any adverse effects from the Rituxan.  I'm only telling you this to point out that we all react differently to different treatments, and the horror stories you hear won't necessarily apply to you.

Best of luck in finding the best treatment for your needs!
Cheryl

[irish]

This is just a little remark about the drainage had. The body is really a very wondrous thing. Here it decided that you had this abscess and it had to get out so it found the weakest point and out that poison came.

Yes, it is yukky and does take a long time to clear up, but we can all be so thankful that our body does a lot of things right cause it does save us lives many times. Just my thoughts on drainage. If it doesn't come out it can kill us. Irish

[Belinda]

Hi Belinda - I'm just wondering if your Rheumy is advising you correctly.  I too have Sjogrens (2009) and RA (2010) and have progressed rapidly through Plaquenil, MTX, Leflunomide and Enbrel.  I stopped Enbrel in March and was able to start Cimzia in April, which I inject every 2 weeks alongside weekly injections of MTX. 

I'm due back at the rheumy on 07/11 and am concerned that I will be coming off the Cimzia.  She told me 2 months ago that if the inflammatory markers didn't come down soon she would recommend Ritux.  I'm also concerned about this, but the consequences of uncontrolled RA are also not pretty, especially with heart disease in the family.

Not really sure what to say to you except that you are not alone.  It is a lot to take on board.   I sort of think that at 51 I have a lot of living yet to do and need to do whatever it takes to make that happen. 

Have you thought of contacting an RA charity to check out the legal position with regards to a 2nd anti-TNF? Thinking of you, Ailsa XX

Hello Ailsa

Thank you so much for your kind words they do mean alot.

I am going to be ringing the NRAS to see what my position is with regards to pushing the rheumy into letting me go on another tnf drug. 

I am 100% sure at this time I do not want to have the Rituximab, I may change my mind further along the line but at this time its a no.

I will let you all know how I get on with the Specialist on Thursday,

Am so sorry Cimiza is not working for you and hope the next treatment for you will be your "wonder drug".

Love
Belinda
xxxx

[Belinda]

This is just a little remark about the drainage had. The body is really a very wondrous thing. Here it decided that you had this abscess and it had to get out so it found the weakest point and out that poison came.

Yes, it is yukky and does take a long time to clear up, but we can all be so thankful that our body does a lot of things right cause it does save us lives many times. Just my thoughts on drainage. If it doesn't come out it can kill us. Irish

Hello Irish

Thank you for your message.

Oh boy yes I am glad that it found its way out. 


Love
Belinda
xx