Regular dmards have not worked for me and my Rheumatologist has asked that I decide between Rutuximab and Etanercept. Both seem quite frightening.
Would like to know your experiences of these medications as it is a difficult decision to make.
Look forward to your responses.
Hi
Currently on Benepali a Biosimilar to Etanercept.
I have found it great and much better for me than either sulphasalisine or methotrexate
Hope this helps
I've been on Enbrel for 18 months and it's working well. No side effects except for a site reaction for the first couple of months. Clemmie
Hi
I have been in etanercept for about 18 months and it's been fine. It is the second biologic I have tried. I take this alongside 20 mg methotrexate, weekly.
No significant side effects to report.
There is no way of knowing which is going to work best for you so unfortunately it is trial and error. Etanacept is a weekly self inject and usually delivered to your house so you need to allow for that. Ritux is 2 days a fortnight apart at the hospital for 6-7 hours every 6-12 months depending on its effect for you. Personally i am sero negative and etanacept worked for me but not ritux. Farm
I have been on Etanercept since 2008. No side effects (except for injection site reaction) but most importantly amazing results. Far more effective than any of the other DMARDs I have tried over the past 40+ years. If you give NRAS a ring they will be happy to talk through your concerns. Like you I was very worried when reading about possible side effects but know that letting RA run riot through your body can cause more damage than any side effect.
Etanacept and Rituximab work differently and as with any DMARD what works for one person may not be effective for another. I tried the biologic Humira first and it had absolutely no effect upon the disease. All the best with your decision, Jude
I have tried HumIra, Enbrel and Rituximab and none worked.Had and still do have 3 years after last in fusion of Rituximab neurological and blood problems so they will not offer me again
Please before starting any biologic do some research. I was on all DMARDS and nothing worked. Then went on an anti TNF alpha (humira) and had wicked side effects.
What are your CRP levels like? High low somewhere in-between?
Ask your rheumatologist what your numbers are and why you are being given a choice between 2 tnf alpha drugs.
Try to see if they will test your Interleukin 1, 6, 10 and 18 levels.
If 1 is high, then go on Anakinra, if 6 is high go on Actemra (Tocilizumab) , IL 10 is a different cytocine that enables healing I believe and I cannot remember what 18 is for.
Just because you have RA or someone there abouts, does not mean you have an abundance of TNF in your system.
Just my 2 cents as I have had to try a lot of these before finding that my IL6 was stupid high and got on Actemra (Tocilizumab) .
Brought CRP down from 159 to less than 0.2 in just over a month or so.
Hope this helps you
Scott
Peterborough67 - I have been on etanercept for over a decade and it has changed my life, giving me back a better quality of life so I could do things I had been unable to do for a very long time, pre etanercept treatment. It has worked well for me but I understand it does not work for everybody. You'll only find out if it can help you by trying it... So it is your choice entirely (plus rheumatologist). It all depends whether the quality of your life has been diminished by RA and if your experience much pain. I welcomed the treatment having had much pain for a long time prior to treatment and it gave me my life back. Good luck.
Have been on Rituximab for ten years now and it completely changed my life. I was diagnosed with RA in 1975 at the age of 23 and in those days there were no effective treatments for the disease. Things improved in the mid 80s when I started on methotrexate but damage to my joints continued and over the years I have had numerous replacements.
I am now considerably disabled but the severe pain and flare ups are infrequent thanks to Rituximab. OK, there are side effects, and I now have problems with my immune system which requires infusions of immunoglobulins about every 6 months. This is a result of over 40 years on steroids, 30+ years of methotrexate and Rituximab. However, I have no regrets about taking these drugs as the quality of my life as been improved.a
I have never had Etanercept so cannot comment on this drug. I would urge you to take the advised treatment to prevent further damage to your joints. Wish I had been born 40 years later! I wish you well.
Pam
Pam I am on Rituxan as well. Most other infusions keep failing so I go back to Rituxan. I have had RA for 18 years and was major for about six years. They have moved my solemedrol down to 50 mg from 100 mg since I have so much side effects from it. This last infusion I was sick for five days. Do you deal with this also?
Mary, the major problems I have had with the Rituximab are the repeated infections due to damage to my immune system. I would urge you to monitor your immunoglobulin levels. If you are getting a lot of infections then ensure you have your immunoglobulin levels monitored.
Unfortunately, my low IGg was missed by the hospital and I had four very difficult years with numerous UTIs, chest infections and shingles five times! It was only when I did my own research and saw my Rheumatologist to express my suspicions that he checked my bloods and found I had hypogammaglobulaemia.
I do have a couple of dodgy days after the infusions due to the premedication which they insist I have. It is the 100 mugs of steroid that disrupts my sleep, makes me very hot and flushed and makes me hyperactive. Other than that don't actually feel ill.
Best wishes Pam
Seems a little strange that your Rheumy is asking which medication you want to take! Surely it is for them to decide the best for the patient. Maybe they are asking if you want to inject yourself each week or have an infusion at the hospital every 6 months. I was on Enbrel for 3 years but had to change when I had a flare, then it was Abtacept for 1 year (stopped after an allergic reaction), and now Rituximab - had my third infusion in May and all seems to be going well. Have to say that at the time I was taking them all was good. As with many people the real downside of RA and the meds is the chronic fatigue (but not sure we can do much about that ☹).
Hi I remember my Consultant giving me leaflets about a few medication and then asking me to decide...he gave his recommendations but left the decision to me. He will obviously stop any medications that he feels aren't working...I tried to stay on Enbrel but he wasn't having any of it!! Just had my first infusion of 3rd cycle of Rituximab today..I was also told to have a blood test before the second one which I've never been asked to before but apparently it's standard procedure? Good luck with your decision..let us know what you decide 😊
After 18 years I too exhausted the supply of & I opted for Rtx as it was two infusions - a few hours, depending in length of your particular infusion , in a hospital transfusion unit...quite social - most people chat,read & sleep the day away.
You have the infusions two weeks apart, with a blood test the week before each one. This happens twice a year & if it suits you you just see a Rheumy nurse once in between the 6 monthly treatments.
I have found it has settled all my aches,pains & swellings except my wrists, but they are much better & I can get on with my life!
After the first set of infusions I felt a but fluey, but nothing to be bothered by. I now I have no after effects,,,..I drive myself there & back.
Altogether I'm very happy with the was things are going. My Rheumy says if I continue like this I should be able to move on to just the two infusions once a year.
Hope you get settled in your drug of choice soon.
AC
Hi, Can't really add anything to the good advice already given. Also think it's strange that you have been asked to make a choice rather than asked for consent after being talked through about the drug. Etanercept was a miracle for me and worked for 14 years. Now after some trials and tribulations I am on Rituximab with Steroids, sulphasalisine and Hydroxychloroquine that I've always been on. It worked much more slowly but fingers crossed! Hope you find the best combination of drugs to help you soon.
Wishing you all the very best
Michele
I think a choice of injection or infusion is actually what's on offer...not the choice of medication!
Not everybody can take every Biologic ...when I was advised to go on to them it was explained that I was only eligible for x,y,z as I'd previously had cancer, then my Rheumy nurse explained it could be either injections or infusions.
I'm happy infusions 4 times a year....but some may prefer not to spend a whole day in the Hospital!
Hi,
Of course! That makes more sense. The infusions are OK and seem to have got me back on track. My work place are very supportive of me needing time off. It's back to the usual "everyone is an individual" and you can only go with what suits you
All the best
Michele
Etanercept was a fabulous drug for me and got me out of a wheelchair. I've always side stepped Rituximab when my rheumy has given me a choice of two. Not happy with the idea of having an infusion, then what happens if you develop a nasty infection? At least on the Etanercept injections you can stop them when you get an infection to give your immune system time to recover. Heard of too many people having serious infections on Rituximab.
Hi Peterborough67, welcome. I , like you, have had no luck with DMARD's. I tried Humira, Orencia and cannot take Actemra due to other issues. I am about to start the second round of Rituxan, Monday July 24th. I have not experienced any negative or positive effect ,yet. My Rheumatologist said that it would work better with MTX so I am back to weekly injections of Methotrexate 20mg.
The drugs are frightening but your best option for now. We are all affected in unique ways and respond to drugs in our own way. Best of luck and stayin touch. This site is loaded with people with experience who can help guide you on your journey😜
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