Sero negative, what works?

[LesBev]

I have taken the plunge, refused Rituximab and asked to change hospitals. Nothing has worked for two years and as I can never get through to anyone to talk about my issues and pain (short of staff) So I am moving. Has anyone been prescribed Rituximab if they are sero negative? My reading tells me is it less likely to work for me but is this the case. Feeling scared,confused and now on another waiting list managing on steroids. Getting depressed now.....

[Barrister]

Why did you refuse rituximab? I have PsA and was originally diagnosed as sero negative. Not taken rituximab but have tried Humira for 14 months which worked well at first but later stopped and now taking Enbrel. Hoping that will work for me. Clemmie

[LesBev in reply to Barrister]

Hi, I refused Rituximab because my research showed it is far less likely to work if you are sero negative. There are other drugs which might have a better chance for me and I was not included in any discussion on which to try next. I am fed up of not being communicated with! The disease is hard enough to live with as it is. I just have to wait again now to be listed with a new consultant. Thank you for replying, great to feel there are others who care/understand.

[farm123]

Mine is sero negative inflammatory arthritis. A few years ago nothing was working and I was running out of options so I did try one cycle of Rituximab even though it was said that it usually works best for sero positive. Think the hospital was awaiting approval for tociluzimab and abatacept at the time. For me it did nothing. It depends on the drug protocol of individual hospitals as to the order of drugs offered. Farm

[Ali_H]

Hi,

I'm sero negative RF but positive for CCP and my RA is fortunately managed with MTX (20mg) at present.

I would suggest whilst your waiting to try and ease things by cutting out refined/processed foods etc (if you haven't already ) - in my experience it won't cure your RA but may take the edge off it if only by helping you to feel that you're doing something positive in these tricky times.

Also let your new rheumy dept. know that you'll take a cancellation and that way you may get seen sooner. Taking someone in with you to your appointment may help you to be 'heard'.

All the best

Ali

[LesBev in reply to Ali_H]

Thank you Ali, I will try your suggestions and take my mum, what a laugh at 61 to take my mum! But, she has seen me at the worst and been the one to help. Luckily, she is fit and well. I am glad you are stable on mtx, take care.

[Matilda7 in reply to Ali_H]

Just wondered what else you've tried apart from conventional drugs? Have you considered changing your diet? Seeing an acupuncturist? Doing yoga? All of these have helped me and I was diagnosed in 1978 so have had a long time to experiment!

[earthwitch]

If your seronegative arthritis is actually one of the spondyloarthritis group, then rituximab is one of the meds used for that, and expected to work, so being seronegative is definitely not a reason to turn them down. I'd plump for any of the antitnfs in preference to steroids - far less potential for serious side effects, and potentially also much better long term benefit. If you are still confused about your med options, ask to speak to the rheumatologist again to discuss the pros and cons fully. Also remember that some of the literature on antitnfs is quite out of date now - originally when they first started being used they were thought to have significant risk, but the longer they have been used it is now becoming much clearer that they are really a very useful group of meds with a very low side effect profile. If you do read about them, make sure the information is dated 2014 or later to get the most recent research and the best possible advice.

[LesBev in reply to earthwitch]

Thank you, it is hard to be balanced and logical when the pain has not stopped for two years. I do need to discuss with a rheumatologist but as yet I don't have one. Just packets of steroids! I hope my new hospital gets me in soon. Take care and I do appreciate the good advice on here.

[BoneyC]

I'm sero negative and Rituximab did nothing for me at all.

[LesBev in reply to BoneyC]

Hi, do you mind me asking what did work for you?

[BoneyC]

Sure, I've had RA since 1971, lots steroids, NSAIDs & MTX for almost 40 years.

[pinksugarmouse]

I feel for you and I understand. I am sero negative as well and rheumatologists seem to forget that sometimes the treatments which work brilliantly for most don't always do much for us. At my hospital the first thing they say to me each time is "your blood shows no signs of active disease." Big sigh and I have to point out again no it doesn't, it never has and never will. Even when I couldn't support my weight to sit up my blood remained quiet about the matter.

Growing up with RA only two drugs really worked for me; steroids and gold injections but when I asked my rheumatologist about gold they said they pretty much give everyone methotrexate now and gold is hardly ever used.

I think if you aren't getting any support then it probably is best to try moving hospitals but as others have said check that your research is current because you don't want to be ruling out drugs that might help.

But please come on here and chat to fellow sero's anytime. By the way which drugs have you been advised work best for the likes of us?

[LesBev in reply to pinksugarmouse]

Hi, I have at last changed hospitals and now attend a teaching and research centre. They are starting me on Tocilizumab in July and I really felt they listened and had experience of Sero negative challenges. I pray this works. It seems there is no one size fits all with RA!

[pinksugarmouse in reply to LesBev]

That's terrific LesBev. I am glad you are finally seeing people who are treating you with your RA and not just someone with RA in general. I think we would all benefit greatly from a more personalised approach from our Rheumatologists. This is supposed to take place in all hospitals already but obviously there is still a long way to go yet.

I am feeling brave after reading this thread and your experiences. You have inspired me and I think I am going to write to the hospital treating me and ask about their experience of Sero negative challenges and perhaps express my concerns that I think this is being overlooked perhaps to the detriment of my health.

Fingers crossed for you (and slowly uncrossed using heat and cold packs lol). I wish you the very best of luck. xx

[LesBev in reply to pinksugarmouse]

.hi pink sugarmouse, love that name! It is just a shame we have to fight to be heard properly as well as battling RA. I spoke to my new hospital helpline and they too have been super. I wanted to ask about toe separation and can I be helped, now referred to a podiatrist. Every day a new challenge and as I live alone, having contacts on this site is such a help. Thanks to everyone who cares enough to join in......stay strong my friends......X

[shareasmile]

Hi LesBev! I am very late to reply, but I am also sero negative. Mtx failed for me and Humira also failed, but Enbrel worked almost overnight. I am so thankful for this medication! My rheumatologist says it works differently than the other tnf blockers because it travels in the blood and blocks tnf there whereas the others (Humira specifically) goes to the joints and fights there. Whatever the mechanism, Enbrel is my lifeline! I hope you get relief!

[farm123 in reply to shareasmile]

I am sero negative and Enbrel also worked for me (well 7 years) and Humira did not. My body does not like MTX so both Enbrel and Humira were on their own. For me now Abatacept with 200mg hydroxychloquine works (although running with low neuts and white blood count but I do not appear to suffer with infections/illness more than at any other time). Farm

[LesBev]

Thank you, I changed hospitals and found my new one agreed with me about Rituximab, I am now waiting to start Tocilizumab, I pray it works for me as Embrel does for you. It is just so hard a journey, but, knowing you have made it and found a drug to let you enjoy remission is great! Long may that continue. It is a shame there is no way I know to enable local meet ups to share stories over a coffee, that would be such a support....