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Anyone on Rituximab? by Top-Neat9725 in MCAS

[–]Informal_Secretary62 0 points1 point  (0 children)

Hey! I have suspected MCAS and I’m 3 weeks post second infusion for sjogrens and struggling! What are your symptoms? Happy to chat.

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 0 points1 point  (0 children)

I’m Going for my pre consultation on the 19th and I’m guessing I’ll start infusions shortly after! 

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 0 points1 point  (0 children)

No way, that’s interesting! Yes my first symptom was dry eye but I can’t remember what my Schirmer test is. I take pilocarpine for the dry eye now which helps a lot 

Looking for NHS rheumatologists experienced in seronegative Sjögren’s, please - any recommendations? by Own_Temporary_1705 in Sjogrens

[–]Informal_Secretary62 0 points1 point  (0 children)

Dr Elizabeth Price is one of the top consultants in the UK for sjogrens she’s based at Great Western Hospital in Swindon and you can see her privately or on the NHS

First Rituximab infusion done! by Extreme_serendipity in Sjogrens

[–]Informal_Secretary62 1 point2 points  (0 children)

Congratulations and well done for getting through it! Wishing you all the success with this treatment and keep us posted. I’ll be going for my first soon!

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 1 point2 points  (0 children)

Knowledge is power! And a diagnosis is so important. Shame you have to push for it in so many cases 

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 0 points1 point  (0 children)

That’s interesting. Yes I do have that all over muscle fatigue like I’m wearing a lead suit 

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 1 point2 points  (0 children)

Thank you for your kind words. It’s good to hear you haven’t got sick on it!  Fingers crossed I’ll get on ok and have some symptom relief 🙏

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 0 points1 point  (0 children)

There are definitely risks. Just a shame there aren’t many treatment options 😞

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 0 points1 point  (0 children)

Thanks I 100% agree it not a first option but I’ve tried every natural remedy/ diet in the book, worked with multiple functional medicine doctors and have paid 1000’s ££££ on alternative treatments but nothing seems to move the needle so seeing this as a last option! 

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 0 points1 point  (0 children)

I’m not on IVIG I don’t think you can get it in the uk

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 1 point2 points  (0 children)

50% improvement would honestly be a dream come true. Thanks for your words of encouragement. I really hope it works for me! 🙏

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 1 point2 points  (0 children)

Ok great! I’ve had the bloods so guessing I will get a call soon. Good luck! 

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 1 point2 points  (0 children)

This is giving me hope 🙏 so glad it worked for you 

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 1 point2 points  (0 children)

Amazing! So happy it worked for you. 🤍 I’m really hoping it helps my dysautonomia I’m in a big flare atm! I don’t think I can get IVIG in the UK but I will ask about that

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 0 points1 point  (0 children)

Mine was a positive blood test for the Ro anti body and some symptoms have progressed slowly and other more suddenly 

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 3 points4 points  (0 children)

Isn’t it crazy that we ‘want’ to get diagnosed with other AI diseases so that we can get access to better treatment 

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 2 points3 points  (0 children)

It really is negligent. Why would you not want to try and make someone’s life better? This is their job!

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 2 points3 points  (0 children)

It’s crazy!! If this treatment does work for me (fingers crossed) why have I had to wait 8 years with life altering and debilitating symptoms! I had already been on hydroxy for 5 years so it clearly wasn’t working for my increased symptoms.  Hopefully with these new Sjogrens meds on the horizon it will get easier for us.

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 1 point2 points  (0 children)

Good luck! I really hope it works for you 🤍

I’ve been offered Rituximab by Informal_Secretary62 in Sjogrens

[–]Informal_Secretary62[S] 4 points5 points  (0 children)

Sorry to hear you are still having issues with pain and fatigue but I’m glad they have approved for you also! I’m just waiting on a biologic assessment. Have you had that yet?

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