Another Biologic

[kaypiercy]

Hi

Any one here on tofacitnib ? (no idea where do they get these names from). I am just about to start taking tofacitnib informed that this is new in UK and was wondering if anyone is taking this and any views. As usual there is a long list of possible side effects this always puts me off sounds just as toxic as other biologics I have been on, it seems as usual it's a suck it and see what happens (Russian Roulette anyone).

my best wishes to all

Kay

[Amy65]

Hi Kay thanks for that .ur right they have no idea kind of like guinea pigs lol .try wait and c .I'm so fed up in agony off biologics since April. Robbed of in Aug with patches then he will think about Jakinhibaters in Nov. Never mind if my head falls of in mean time lol .how are u keeping have u been on biologics amy

[kaypiercy in reply to Amy65]

Hi Any65

Thanks for your understanding, we are the only people who know what its like ! Yes I have been on 4 other biologics and not looking forward to number five, its bio cocktails all round.

best wishes

kay

[Amy65 in reply to kaypiercy]

So true hope u get on ok with this biologic take care Amy x

[Damaged in reply to kaypiercy]

I seriously doubt you are in an exclusive group lol 😂 I am currently on Biologic number five and we have a winner ! So in our case, if at first we do not succeed we try, try again . Tofacitinib (Xeljanz) is my current drug of choice. It has had a dramatic effect on my mobility and pain. Now that my hip problem , which was a spine issue , is resolved it is quite manageable. I am waiting on MRI results before I go back to walking but looking forward to it. It is also in pill form yahoo. No more needles, how cool is that . Do not be afraid . If it does not work try something new. Better than no options, right. Good luck 😉

[Amy65 in reply to Damaged]

I have been on 7biologics remacade Enbrel humera simzea tolicmab golmumba secukamab so hardly exclusive .just asking how jak ihibatoers work

[Damaged in reply to Amy65]

Over what period of time Amy65 ? It must be so very frustrating for you. It is such a challenging condition. I certainly hope that this one will be the one that works for you. If nothing else it will add yet another areaJAK inhibitors , that can be ruled out as the source of your RA? I am certain you have found many strategies for coping after seven unsuccessful attempts. There is no way to make it easy but admirable that you have not stopped fighting. Best of luck with this one. I had given hope that any would work for me either and yet after three years we have found something that is working, for now. As you know, good to celebrate any progress. Big hugs and best wishes.

[Amy65 in reply to Damaged]

Hi damaged I have had RA since 1997 and anklossing spondlittis since 2002 so quite a challenge lol biologics over 14year period then stopped working I think our body gets used to them

Hoping to start Jak inhibaters soon .thankyou for ur advice take care Amy x

[helixhelix]

I am such an RA nerd....it saddens me sometimes. I should collect stamps instead or something.

Anyway the drug names do sort of mean something. So the ending "ib" means it's a small molecule drug and the "tin" before it means that it is a tyrosine kinease inhibitor. So all the drugs like this will have similar ending - the other one in uk is baractinib (or trade name olumiant).

Yours is also known as Xelianz, so if you put either name into the search box top right you will find other people who are taking them.

And you are not completely guinea pigs as the drugs go through years of testing before being allowed to be used publicly...

[Shalf in reply to helixhelix]

Your very informative HH , very helpful to a lot of people x

[Hessie5 in reply to helixhelix]

Thanks Helix, such knowledge! Really helps 😊

[kaypiercy in reply to helixhelix]

I am so impressed, and you're not a nerd you are just very well informed and helpful.

Thank you for the info, now I know

kind regards

kay

[Damaged in reply to helixhelix]

I have become addicted to building 10. It is where all drugs go through human trials for the first time. Incredible courage of all participants both patients and medical professionals. It is inspiring.

[Hidden]

I've renamed my biosimilar... Now called Hector. Much more friendly

You don't want to know what I called sulfasalazine and methotrexate.

[Hessie5 in reply to Hidden]

Please do share 😀

[Hessie5]

Hi Kay - I started this medication 7 days ago! However, only the 1 tablet a day as my low blood count, increasing after week 2. Hmmm not sure if its working as too early to say. Like you I held off as side effects until.a major flare hit me and I thought give it a go! Let me know how you feel. I shall be doing an update this week. All the best, Hessie

[kaypiercy in reply to Hessie5]

Hi Hessie5

Thats helpful thanks, I am also going to start on 1 a day for a week. My rheumatologist says that tofacitnib should start to work after 2 weeks, I won't hold my breath but I will keep all updated on my progress.

keep smiling

Kay

[Damaged]

Kay pierce, you may want to consider genetic screening. It is very helpful in some areas. It is not very helpful with many Biologics as they are still new to market. This may help you avoid unwanted drug reactions.