JAKS 2 Inhibitors Baractinib update

[moomie]

Morning everyone, just thought I would update you on taking this new drug.

I started taking it 1,11,17 no side effects whatsover as far as I am aware. By the 8th November I woke in the morning and my fingers only took about 45 mins to get moving. Also I went to my aqua aerobics which I have been struggling with. When I got out it was easier, plus I could get up the stairs much easier. 3 weeks in morning stiffness is down to just over 30 mins but not half as bad. The swelling after am intilal usual swelling in my hands has reduced, the burning has stopped. Pain levels much improved. I do not even notice the stiffness in my ankles anymore. I am not as stiff when sitting and getting up. The other thing I have noticed is my back is so much improved but that was only bulging discs and osteo.

I am still tired but a different tiredness not a exhausted ill tiredness. Just when I sit to watch tv by 8.30 I am falling asleep.

I feel so excited and grateful to be able to start on this drug.

The photo above, I fell the night before we went on holiday, landed on both knees. Cannot tell you how annoyed I was with myself. Ended up in minor injuries and have a full length knee brace on. Long story first hospital saw a fracture, sent to trauma unit who not sure. Had to go to local hospital at home. No fracture, knocked off some bone spurs , bad soft tissue injury not to underestimate. They think ligament problem but too swollen and sore to examine. I am not a wimp but could cry with this pain. Now it has developed this red patch. So so angry with myself.

Do not want to distract though from the new drug. If anyone gets offered this I would certainly go for it. I have not been on biologics just triple therapy and steroids. When starting I stopped sulpha hydroxy and just kept on mtx injections.

Apart from this stupid knee it is positive news at last 😁

[Pat9442]

I feel for you! I recently had a heavy fall onto my left knee - which already had been replaced. Went completely black within a couple of days! Now grossly swollen and hard to bend. Rheumy can't aspirated or give steroid injection because of risk of infection. So guess I will limp for a while

[moomie in reply to Pat9442]

Oh dear that's not good. I hope it has not damaged your new knee. Mine went black from top to bottom within a day too. Cannot bend it either. Isn't it frustrating. Hope you go on ok.

The new drugs are good though

[Pat9442 in reply to moomie]

Just failed on Benepali which worked which wonderfully for about two months. Now waiting to start Tocilizumab. In the mean time thank heavens for steroid injection

[moomie in reply to Pat9442]

Do hope that works for you. I had a depot in between having my das scores checked. Yes they are great. Good luck.

[Birthdaygirl]

Ouch!!!! Feel so sorry for you. Horrible having these sort of setbacks.

Good to hear about the JAK inhibitors and your progress. Sounds encouraging.

Be careful out there.

BG

[moomie in reply to Birthdaygirl]

Thank you. Doesn't it always happen at the wrong time

[Cherub198889]

Ouch!! that looks painful, but I'm glad your new medication is working for you .

[moomie in reply to Cherub198889]

Thanks yes silver lining and all that

[Gnarli]

I'm thrilled to hear your new med's working so well for you but, please, don't beat yourself up because you fell. This nasty disease already does an excellent job of that. I hope your knee gets better very soon. Hugs

Jan

[moomie in reply to Gnarli]

Thank you. I am thinking of the positives. We had plans it was my birthday and we went to our favourite place. Weather was good for taking our dogs on the beach. I think I felt guilty because my oh only had a week off. But next year maybe jogging up the beach xx

[Gnarli]

Next year legging it up Everest!

[moomie in reply to Gnarli]

yes xx

[nomoreheels]

I'm so pleased baracitinib appears to be suiting you J, less so you falling on your knees, that must have really hurt & I understand your frustration. So what's to be done, left until the swelling reduces & use the knee brace? Not sure about the red spot that's appeared, but at least it's not a black spot (if you remember Robert Louis Stevenson from childhood?). Seriously though, I hope things continue well & your knees settle with no permanent damage. x

[moomie in reply to nomoreheels]

Thanks NMH. Just when things are going well. It's great to move my fingers.

The knee oh boy. I was almost in tears when the physio tried to examine it. It will not bend hardly any movement at all. It is black all way down the other side. Bruising that is.

He wants me to try and slide my foot on the floor a few times every hour to get some movement back. Elevate and ice still. Brace and crutches. It almost 2 weeks now. Got to go back to fracture physio on the 4th. He hopes he can examine it then to see what's going off. Did say could take 3 months and about 6 weeks before I can drive. That is annoying being stuck in and not able to get anywhere. It's still too painful to try and walk. I will drive as soon as I can manage too safely.

Hope hubby has had a good consult in pain clinic.

Falling asleep again now tramadol +++ will msg you tomorrow x

[Hessie5]

Hi - I have to take thus new drug 4 mg - please can you provide an update as feeling somewhat apprehensive as I can see it is a new drug not much testing .... ever so grateful - Hessie