Update and new biologic is TOFACITINIB: I shared with... - NRAS

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Update and new biologic is TOFACITINIB

Hessie5
Hessie5

I shared with you all that I was off Baricitinib due to white blood cell count being too low. My Neutrophil was at 0.3 (normal is >1.5) I had to stop that biologic immediately. I had another test 3 days after stopping this biologic and my Neutrophil increased to 2, happy days. Today I saw my Consultant he was left thinking if they made a typo! But not taking any chances he made the decision to change.

I have been nearly two weeks meds free - it has been up and down, (honestly more ups) whilst praying I do not get any flares as I wait for this new biologic. I did experience 2 days post stopping on the Friday, by Monday yikes a flare had struck! By Wednesday things were good.

If anyone is on this new one please do let me know your experience with it. I am suppose to be taking two tablets a day but I said to my consultant let’s this time do a drip feed approach, starting on one tablet a day and he agreed. Blood tests once a week to monitor. This medication has been In use for 10 years for info.

I have a another week to wait I shall of course update you on my journey when I start taking it.

Wishing everyone an inspiring day. 😊🌤

12 Replies
oldestnewest

Hi Hessie,

Great news re your white blood cells.

I wish you the best of luck with your new biologic.

I have just completed week 2 of the Baracitinib. Excessive tiredness is the trouble but other than that so far so good. Should get full blood results tomorrow.

Keep us posted

Suzie x

wishbone
wishbone
in reply to Shalf

Hi Suzie,

Glad that things are going ok. Hope the tiredness eventually goes.

How do you go about getting your blood results. Is it by phoning either the rheumy secretary or helpline?

Shalf
Shalf
in reply to wishbone

Hi Wishbone

I should get the results today from my GP. At the latest tomorrow.

Suzie x

wishbone
wishbone
in reply to Shalf

I asked the bloods nurse if I can get the results from my GP and she said no, they go to rheumatology.

Did you have your cholestrol done?

Shalf
Shalf
in reply to wishbone

Hi Wishbone, just seen this. Yes, I was given results from GP. Maybe other surgeries work differently. Cholesterol was fine. Having a flare today though , was all going so well :(

Suzie x

wishbone
wishbone
in reply to Shalf

Thanks for that Suzie, I wasn't asked to fast for my blood tests so they can't have checked my cholesterol, which is mighty odd, especially as I had a mild heart attack many years ago and have been on statins ever since.

That flare must be disappointing. Hopefully it will ease off pretty soon.

I'm having problems too...surprise surprise!! Have just started a new thread titled 'Sudden knee pain'. My finger's been hovering over the panic button all day. I don't think it's an infection in my knee as the pain would be excruciating...an ex-nurse on this forum who was familiar with septic arthritis told me the pain is worse than having a baby. Now that's certainly something coming from a female! :-)

Apologies for airing my problems once again.

Take care

Hessie5
Hessie5
in reply to Shalf

Hi - thank you Suzie and well done on getting through to week 2. Do share the result it would be interesting to know. The tiredness was one thing I suffered with so added more vitamin C. Here’s hoping this is the one for you. All the best ... Hessie

Hessie5
Hessie5
in reply to Shalf

Hi Suzie - just wondered how you are fairing with the Baracitinib? Hope all is well. -Hessie

Hi Hessie.

Pity the baricitinib wasn't for you. Good luck with the new med...onward and upward as they say. :-)

So far so good with me. No noticeable side effects from the baricitinib as yet and long may it run.........................................................................

Take care

Hessie5
Hessie5
in reply to wishbone

Thank you Wishbone. Glad all working out for you and no side effects, as said heard it is a good one. Keep us posted. All the best - Hessie

If you put tofacitinib into the search box you will find the previous posts on this medication. There has been quite a bit of discussion about it.

Hessie5
Hessie5
in reply to oldtimer

I did try this, not sure if anyone else is experiencing unable to tap on a reply to view it? I tap away and nothing, it just does not open - all very odd. Thank you though for the response.

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