Seronegative people

[JoannaP79]

I know rituximab isn t an option for me in the UK however I would love to hear if any on you whom are seronegative have tried it and did it help. I see there are a few threads on rituximab but I'm really eager to learn who is seronegative and for whom it is working.
Am I right in thinking that for seronegative persons b cell proliferation may not be the mechanism of autoimmunity in our case. I ask this as I believe this may be a reason why they won't try rituximab in our cases

[Joe S.]

Well, I do not use rituximab and never have. I use supplements and other alternatives. There are options that you can use. You may want to check our signatures for what some of us are taking.

[warmwaters]

I started out seropositive, but am currently seronegative. Also positive via lip biopsy.

Tried Rituxan, didn't work for me.  Given how many other things I've tried, I'm glad I tried it, even if it didn't help. Seemed like a reasonable risk, given how well it works for some.

[JoannaP79]

Thanks for the replies everyone. I'm really not undermining others suffering but I'm basically bedridden and feel like it's my last night on earth every time I go to  sleep at the moment. I don't feel supplements will cut it for me. I am gluten, dairy free and take a fair bot of supplements already. I've got plaquenil now which is something.
A sjogrens specialist suggested trying enbrel biologic again. The reason being that I am hla b27 positive and my original disease is ankylosing spondylitis. Sjogrens joined the party much later.
Anyone like me try a biologic with any success?
I am fearful of rebound issues when you start something and then stop which is why I am persistently quizzing you all.

I suffer uveitus alot and now have blurring at times from intracranial pressure. I have got severe disc issues in my neck which I believe are contributing. I know plaquenil may be a risk with all this. I will still start it though as I need to start treating asap

Thank you again for all your info and support

[MAT51]

I know this will sound a bit of a sideways suggestion but I am going to advise that you try and speak to someone on the Vasculitis UK helpline (I think she is the main helpline person but I'm sure the other person would be useful to speak to as well). I think she is on an infusion biologic called Infliximab - and also is HLA B27 positive with some symptoms of AS - although her official diagnosis, after a long, hard journey, is Behcets.

Dr P told me that sometimes we just have to go for the most expedient diagnosis we can get. In my case this would be RA - which I was I totally misdiagnosed with. In your case it would probably be AS by the sound of things. Best of luck

[Kristian]

JoannaP79--I have AS too in addition to Sjogren's.  Have you tried any of the biologics yet?  I am on month 3 of Humira and it seems to be improving my symptoms of Sjogren's in additon to the Anmkylosing Spondylitis it is prescribed for.


Ask your rheumatologist, may help you a ton.

Kris

[JoannaP79]

Thank you both so very much.

Mat, bechets has come up a few times. I really could have this too but haven't been tested for hla b51. A gynae suggested I had this due to inflammation inside the cervix. (Apologies for tmi). So a biologic may be the route to take after all. It's the issue with neuropathies that I am really struggling with. I alreasybhave neuropathies and these drugs may be more dangerous for me. But I'm running out of options and am in a right bad way.
I tried enbrel for about 8 weeks and I think my burning was a bit better whilst on it ( neuropathy started before enbrel). Bit without  a clear diagnosis for the sjogrens I just didn't think it a good idea. The A.S has been quietly doing stuff to my body without me realising I think as scans have shown some pretty bad spine issues and the uveitus never goes.
That sounds real positive ref humira. Are you a sero neg sjogrens as well as A.S?  If I didn't have neuropathies already I wouldn't think twice. My rheum is well versed in biologics and treating A.S which is something so I could access a biologic pretty quickly if I asked her for it i think.
I will ring the vasculitis helpline tomorrow. Thankuou all so much, this group has been my lifeline

[Sharon]

I am seronegative for both SS and RA but Orencia really helped my joint inflammation.
I couldn't even use my hands before I got on it.
Since I'm seronegative I had to fight the insurance for it for over half a year and involve
a lawyer before it was approved.
My suggestion: If you can get on a biological do so as soon as possible. Rituximab is a good bet for SS. Ask your rheumy if it might help with the AS as well. If so, I would definitely give it a try.

[Kristian]

JoannaP79- I am sero-negative for both SS and AS.  I deal with the crazy neuropathy just like you, both diseases are definitely centered around massive inflammation infiltrating every part of our bodies.  I take neurontin for the neuropathy and also need to take a significant amount of pain medication to be able to function.

Ask your rheumy about the impact of biologics on nerve inflammation.  I could notice the inflammation being reduced throughout my body (including my nerves) by the second dose of Humira; literally helped a crazy dryness flare calm down too.. .Not sure how the biologics work, but reducing inflammation will make you feel better and move better :-)

Please let us know how things work out for you.

[JoannaP79]

Hi Sharon and Kristian, thankyou for your replies, this sounds very positive. Sharon I live in the UK and the nhs will not approve rituximab for me with a seroneg presentation and neither will they for A.S. I will however be able to access a biologic like enbrel or humira pretty quickly. Based on limited options and the fact my A. S has always been the primary driving disease I am going to ask to go onto a biologic and see which may be best in my case.
I will just need to confirm I can combine this with plaquenil.

MAT, vasculitis uk were extremely helpful, I had a wonderful discussion with the lady in question and this has helped me focus my mind going forward. Thank you for the excellent advice as always everyone xx

[MAT51]

I'm so pleased to have helped you re the VUK helpline person - who has become a friend of mine over the years. Seronegativity is such a curse I find. Today my optician was checking my new punctal plugs and said my Sjögren's is quite mild. I admit I lost it a little with him and said very sharply "no it is just my Sicca that's manageable - my Sjögren's is actually pretty severe!". It turns out he thought I walk with a stick like a drunk due to Fibromyalgia - which I don't have!! X

[Sharon]

Go for it Joanna!
You can also try a lip biopsy for a definite diagnosis of SS.