Yet another new med Xeljanz TOFACITINIB

[Hessie5]

As mentioned, finally new biologic collected today. I was on Entercept before but did nothing for the inflammation. Having reviewed this new biologic not many people on this, reviews hmm okayish...I shall provide updates. At the moment I have a cold so advised not to start until better.

Its been odd being off all meds for about 6 weeks.... However, do feel the tenderness and stiffness spreading as it ensues. Good time to relax as much as possible.

By the way I have my new orthotics, they are definitely worth the £230 as able to walk better. You do have to gradually build up when wearing them, 2 hours a day due to balancing all joints.

Hope everyone is doing just fine, sending you all healing energy 🧘‍♀️.

[Shalf]

All the best with this new one Jessie! Entercept didn't control my inflammation either. Still on the Baracitinib and joints being kind to me just now. Unsure if it's all the fish I'm eating or the drug though! Fab re orthotics. Good luck with everything X

[Hessie5 in reply to Shalf]

Thanks Shalf much appreciated. Great news re Baracitinib it sure did not like me. Fish definitely helps. All the best for you too.... x

[Hidden]

Hey good luck! Never heard of that one. I hope it does well for you.

Blimey, that's expensive for orthotics! Could you not get them free from hospital? I got some free...though have to say they've been variable. The first pair were fab. Second pair...not so good.

[Hessie5 in reply to Hidden]

Thank you. From what I have read this biologic seems a bit random to be honest. One Dr on Youtube even stated it won't take you to remission. Ho hum!

The orthotics I was told to sort myself, by my NHS Dr and rheumy consultant due to the long long wait - the tendon is so damaged it was a case of no choice sadly. In total £420 for consultancy and orthortics. Very frustrating 😬. They do help so there's the good news 😊..... All the best

[helixhelix in reply to Hidden]

I got mine free from hospital after a 6 months wait, and was told that the pair had to last me for life as cost over £300 to custom make. And they were good, but wore out after a few years. Luckily now I've moved I can get new ones, also expensive but I only have to pay a £50 contribution. Wouldn't be without them!

[NeonkittyUK in reply to helixhelix]

Wow .. Told .. Last you for life?! That's not right. They do at out hosptal let you have a second pair to wear against your first pair and they will repair and replace. Well .. Most people seem to have this! I'm still waiting for my orthotics and shoes since my referral in June 2014. Really long and frustrating story and my feet have suffered a lot for this delay. Anyhow yes they make a huge difference. I've got several pairs of varying bought orthotics including an interim half way right pair from hospital but they have not sorted the shoes yet. A long wait indeed. Bought some very good Pedag orthotics to tide me over too. They are foam topped rubber and are semi rigid and help a lot.

[helixhelix in reply to NeonkittyUK]

Yup! That's what the man doing the casts of my feet said....although I was give the reference number of the firm making them so I could buy more myself if I wanted to.

However, perhaps now with the introduction of 3D printing it's much easier. The last ones I had made didn't require messy plaster casts, but just involved standing on something a bit like a photocopier....

[NeonkittyUK in reply to helixhelix]

Yes HH that's what eventually speeded up the process when I went to a new orthotist and a different hospital. The scanning device is so simple. I was injured 4 years ago at the start of my orthotics journey. A (senior!) orthotist pushed down very hard with no notice or explanation on my very compromised and damaged knee, so my foot would fit into a box of florist foam to take the impression. Result .. a torn knee ligament and years of hassle, pain and immobility. I could have bought a pair privately and there is an orthotics company who make them for the local hospitals just 5 miles from me. I kept thinking .. surely they will be ready soon ... but .. all sorts of insanity and a long long saga which is too long for here! The orthotist is very good and we are almost there now. Appointment next week.

[Hessie5 in reply to NeonkittyUK]

I couldn’t wait as couldn’t walk! I would go to the station to work and end up in tears from excruciating pain. Desperation kicked in! I have to say they have been worth it as now I can at least walk quicker somedays. Still have the pain but they have made a difference. I am going to need a backup pair.

[Hessie5 in reply to helixhelix]

I got a bargain then £300 ☹️