Goodbye to Benepali ;-/: Hope everyove is doing well... - NRAS

NRAS

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Goodbye to Benepali ;-/

Hessie5 profile image

Hope everyove is doing well and coping out there!

I was looking to do this post at my 6 months mark in June whilst on Benepali injections. However, I visited my consultant today for an ultrasound. I honestly, felt confident and thought things would look better in my right foot. Alas, not to be, he said it is so inflamed, in fact he was quite alarmed and said, it has got worse ;-/ So odd, as I honestly felt better. He shared the screen to show the highlighted parts! eeks, it was filled with vivid colours, oh dear I thought. This is certainly not the news I wanted to hear.

The good news is my right foot is fine, so room for a little hooray. If only there was a majic wand I could wave to get rid of the inflammation that sits in my foot. My thoughts did wander, as to why waste time with this biologic if things have got worse!

So my next steps, is switching to a biologic in a tablet form, but first he needs to check my cholesterol. Don't know about you, but just sometimes don't want to take the medication, however, flash backs of the times when I couldn't even walk up and down the stairs follow;-)

Just wanted to share my news with you all and hope you are all in a good space. If anyone is on a biologic tablet, do share your story.

Weather is set to be glorious, wishing you all a divine weekend. As always, embrace hope, be kind and stay positive. ;-)

11 Replies

The only biologic that I think is in tablet form is xelianz/tofacitinab? If you put either in the search box you should get previous posts about it. Good luck..!

Hessie5 profile image
Hessie5 in reply to helixhelix

Thank you Helix. I have been on Dr Google and that is the only one I have found in tablet form too. I remain hopeful! Take care.

Hi love .iwas on methotraxate .which was good for my R/A but didn.t like me .effected my liver blood and lungs. Was on sulphz & benepali..and it did did nothing infact i had so many flares.dont think they really believed how bad it was untill they did an ultasound scan which like yours showed so much inflamation.

It took a while because of tests.but i am now on Olumiant (baricitinib).it is a

Janus kinase inhibitor. It is for adults with moderate to severe active R/A.

One tablet a day. I am also still on sulphz ..

I have taken this tablet for 4 weeks .and

Still have some pain and swelling.

But compared with the flares i was getting.and how bad the pain and swelling was.

As you know we have good times and bad times.BUT. cross fingers .so far so good .🤞🤞

If this is what you are going on.

GOOD LUCK .XX kathyxx

Hessie5 profile image
Hessie5 in reply to keeta

Thank you Kathy - hope it all works out for you. x

wishbone profile image
wishbone in reply to keeta

Kathy, I hope to start baricitnib before too long as you may know. Just waiting for my rheumy to get in touch. Other than having cholesterol checked, what other tests were required? Just curious as I've just had a shed load of tests at immunology so I should be good to go. At least I hope so as I've been waiting ages to start baricitinib.

Good to know that BARI seems to be helping you. Hope it becomes that bit more effective with time.

keeta profile image
keeta in reply to wishbone

Hi love i think it was hep b poss c . Tb was a main one .and then the ordinary bloods .white cells etc .most i had done b4 aswell.

Tried to give me the shingles jab b4 but they were not having it.

Hope you do well on it love. I don.t feel too bad st moment .a hell of a lot better than i did .

Good luck darling .gentle hugs

Most of all keep smiling .kathy xx

wishbone profile image
wishbone in reply to keeta

Thanks Kathy,

The immunologist told me I was clear of hepatitis and my cholesterol should be ok.

Presume they check for TB by x-ray?

keeta profile image
keeta in reply to wishbone

Tb by bloods

wishbone profile image
wishbone in reply to keeta

Should be included in my immunology results then.

Thanks again.

And you love.let us know how you get on .good luck .gentle hugs xx

Thanks for update Hessie5. So pleased for you that there was some positives. Keep on the up. Take care. ☺

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