About to start Filgotinib

[Scocl]

I am about to start Filgotinib, after lefludomide starting to have little effect. I was just wondering if anybody here has got experience of filgotinib and if you were on lefludomide were you told to stop it at the same time. I have been really frightened by all the counselling I have received about filgotinib although am aware it is meant to be really effective for most people iny situation. It is probably because I have been on lefludomide for so long, they probably told me lots of scare stories before that as well! Anyway if anybody has any experience with filgotinib I would be really grateful. Hope you all have a fantastic weekend, and this community is wonderful... Thanks

[Madmusiclover]

Don’t know that particular drug but the side effects of my current drug Baricitinib are enough to scare anyone off. Being an ‘inib’ it must be similar. Leflunomide did nothing for me except give me headaches. My ‘inib’ has been much better. If it’s a daily drug like mine you can always stop quickly if you need to. Good luck. I hope it works.

[oldtimer]

You seem to be in at the start of the experience widely of this drug. Keep us informed how you get on and what you find.As it's a new introduction you will be monitored more carefully and that has to be a good thing!

I know my sister found it very advantageous to be part of a post marketing study of a newly introduced drug, as she was seen more frequently and they listened to her more carefully than usual.

[Lizzery]

I’m sorry I know nothing about the new drug, but just wondering as to how long you were taking Leflunomide. I’ve been on this for about 8 to 9 years now, and have been okay with it, so would be reluctant to have to change. Did symptoms just start to reappear or was it gradual, when it was felt that it was having little effect, and were you at the maximum dose of 20mg?

Thanks.

[Scocl in reply to Lizzery]

Hi Lizzery, I've been on lefludomide for about 5 years after not being able to tolerate methotrexate, and in the last year my joints and fatigue have just got worse and worse. I've been trying to taper off steroids, currently on 4mg but everytime I went below 3 I literally could not walk. Then my wrist blew up on my left hand, and one of my fingers became very deformed on my right hand, very swollen. Had not had a face to face RA consultant appointment, and then at my first one in July, my amazing consultant was very shocked about my hand and wrist and poor mobility. She gave me a steroid injection there and then and she has been exploring me being able to go on filgotinib, because it has only just been approved by NICE for moderate to severe RA. Used to only be available for severe. Hope this has answered your question. Thanks

[Scocl in reply to Lizzery]

Sorry Lizzery forgot to say yes I am on 20mg lefludomide.

[Lizzery]

Thankyou for your reply. Oh my I do hope you are able to try out the new drug, and that it does help.I have been on steroids for over 10 years, and Leflunomide was prescribed about 2 years in to enable me to get off steroids. I have only now got down to 3mg, after a few years of trying, and was on 3 1/2 for a long while.

I’ve had a couple of times off Leflunomide, one because I thought it wasn’t working, and found out it had been, so was back on them again. Another when the rheumie nurses said I had to stop for a fortnight because of a low white blood cell count. So again I thought I’m ok, I’ll not start again, only to find I had to. So at present I’m taking alternate 10/20, to make it 15mg, so I still have the option to go up to 20mg again if need be.

Thanks again.

[notsochunky]

Hi Scocl I am about to go onto Filgotinib but have had no counselling? Just one blood test. I was told about the change in a telephone appointment. I have no idea who is going to deliver it, or if I have to collect from hospital pharmacy. Please let us know how you get on and I will do the same.

[Scocl in reply to notsochunky]

Thanks. I had to pick up my first month from the local hospital on Thursday. From now I think it is going to be delivered to me. I will definitely let people know how I get on .

[Javea]

I have been taking Baricitinib for the past two and a half years and for me it has been life changing. I couldn't tolerate Methotrexate and lefluodomide had ceased helping me. I took two years to come off the steroids. Baricitinib does have some side effects but they are more than compensated for by the improvement in my body. I can now walk again and drive the car and my hands now function much better.

For me Baricitinib is a wonder drug.

I hope that your's works as well for you.

Good luck and best wishes.

[Scocl in reply to Javea]

Thank you for your really helpful and kind comments. X

[Mmrr]

I take leflunomide with toficinitib for around 1 year, together they both seem to have helped me a bit. I haven't heard of filgotinib, but presume it is a JAK inhibitor?

[Scocl in reply to Mmrr]

This k you. Yes it is a JAK inhibitors. Thank you for replying.

[Yansouneh]

I started filgotinib nearly two months ago now I think. Was very wary but apart from feeling sick for a bit, no problems. It hasn't taken away my symptoms entirely but has had an impact as I no longer need daily naproxen to get through the day. I have a post somewhere which I keep updating. If you search on my name it might come up?

[Scocl in reply to Yansouneh]

Thank you Yansouneh.. this is helpful although I'm worried about the nausea. That was why I could not tolerate methotrexate but my RA has really impacted on the quality of my life recently so I know I need to do something. In addition I've been on steroids for 5 years she I desperately want to get off then so hoping this will help. Thank you I really appreciate you replying. Thanks

[Pastels]

I started Filgotinib about a month ago and was given 3 months supply from my hospital pharmacy. I take 200mg once a day, I’m sticking to same time every day. I did feel a bit light headed when I varied the times, otherwise I’m fine perhaps a bit more fatigued. Only monitoring is bloods at one month and again at 3 months.I’m noticing now a change in my joints less swollen, less red and less painful. I’m able to use my hands more and my knee is less swollen. I have my fingers crossed that the improvement will continue and I’ll manage any side effects that occur.

So pleased to get this drug as I wasn’t ill enough for a biological and couldn’t tolerate others.

Wishing you every success with this drug…..👍

[Scocl in reply to Pastels]

Thank you for your response Pastels, I'm really grateful for this information. Scocl

[gardens4 in reply to Pastels]

I have been on Tofacitinib for nearly two years and have found it very helpful with less pain in my hands, feet and knees. They are now suggesting moving me to Filgotinib as it goes straight to the targets more, I have decided to stay on what I know, but I will be interested to see how these trials go. In answer to the lady above I have never experienced headaches or lightheaded feelings. Good Luck.

[Blodynhaul]

Hi Scocl, sorry I've just put up a similar post before I saw yours! Also about to start Filgotinib. Expect you'll see my post. But - also very concerned with the possible effects...I was on also n Leflunamide for about 7 years till it stopped working. How are you getting on on the Filgotinib? all the very best x