Tocilizumab is doing ok on RA front, but Sjogrens is ... - NRAS

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Tocilizumab is doing ok on RA front, but Sjogrens is a problem...

Brushwork profile image
8 Replies

Week 12 and all is well on the RA front:-

The RA gremlin is caged, but sometimes rages to get out. Usually when I have been very active (possibly overdone it), I get pain in lots of joints all at once. Also I still have morning stiffness but it doesn't last as long, and not only in the mornings, after rest periods too. All in all, better than pre Tocilizumab by 90%

Sjogrens though - it is still giving me grief, eyes are sore and dry, mouth, nose and ears etc... all dry. My eyes are the worry.

I have a f2f with the biologics nurse on 1st June. I will seek advice

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Brushwork
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8 Replies

Good and bad there brushwork. I too felt great when I started Baricitinib and the pain and stiffness was better but I got achy stiff joints but not tender too touch . Resting meant I was stiff and I had pain all over . My rheumatologist said it was not RA but fibromyalgia. RA is more localised but fibromyalgia causes pain everywhere especially with the recent weather . I’m not saying you have this but it’s something to think about x

Brushwork profile image
Brushwork in reply to

I was diagnosed with Fribro years ago, but I pretty much dismissed it as RA was my main problem! I wonder, but Sjogrens causes join pain too... my body is out to get me!! 😂😂

in reply to Brushwork

I’m like you my body is my enemy and boy is it crafty always catches me out 😂

Thats such good news about the medicine 👍

Now the sjorgens just needs to pipe down ! Hope it does, sometimes it feels like you can't catch a break but its really positive about the RA symptom reduction . X

allanah profile image
allanah

Yes strange im so much better on TCZ but the sjogrens dry mouth ,dry eyes feels worse x

in reply to allanah

I’ve started having milled flaxseed and flaxseed supplements it’s made such a difference to my eyes and mouth. Now I’m not saying I’m cured and there are days it plays up but it’s bearable and dare I say some days brilliant.. oh hope I haven’t cursed myself saying this out loud x

allanah profile image
allanah in reply to

Sound helpful. Ill have a try x

Angels-delight profile image
Angels-delight

Hi, Tocizumab infusions worked well for me until I returned to live in Canada. Unfortunately, it took 6 months before I was able to get back on Tocizumab and it was in injection form and it didn't work as well which has happened before when I have had to stop a biologic medication. For other health reasons I have had to stop Cimzia injections due to antibiotics. I had only 4 injections before they were stopped, I am hoping to start Cimzia again soon. All meds can effect everyone differently, it is up to your Rheumatologist to find out which is the most suitable for your type of RA. Like I said everyone reacts differently. It is always best to contact your Rheumy nurse to discuss, we are not allowed to advise, only say what our experience is.

Good luck, I hope you get the results you are looking for. Take care xx

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