filgotinib dosage

[Doodlereggie]

hi everyone,

Feel a bit embarrassed with this post,as was so cock a hoop of results on filgotinib,telling all it was a miracle drug!It was and life was brilliant without pain.Because of age dr persey decreased from 200mg to 100 mg 4 weeks ago and pain has all come back.It was so good while it lasted,and I feel really more down than before as now know what pain free can be like!Is anyone else of my age 79 on higher dose,and are they o.k.Have blood tests on 14th Dec and they will probably tell a story.It is a case of weighing up the risks and benefits as I know dr persey will put me back on higher dose if crp increased to what it was.I know you can’t give meds advice,but wondered if anyone else on high dose of JAK2 in spite of age.Thanks for past support which has been brilliant.xx

[Amnesiac3637]

Hi Doodlereggie. We have had conversations over Filgotinib in the past! Sorry to hear you’re not doing as well on 100mgs ‘ cos neither am I and I can’t go higher again now due to my age (71) and my lymphocytes dropping too low on 200mgs. I dropped down to 100mgs in April but have got constant pain again, swollen hands, pain in my knees and am back on Ibuprofen and Paracetamol by the bucket load as they are the only painkillers I can tolerate.

I’m not being very helpful and not answering your question but we were both doing really well on this JAK and it’s turning out to be a disappointment yet again. Baricitinib was my best ever but it stopped working after Covid and I mourn it! I am due for another review in February but have few options left.

It’ll be interesting to see what your doctor comes up with and whether anyone else on this site is on the higher dose at a higher age! Keep us posted. All the best to you. X

[Doodlereggie in reply to Amnesiac3637]

Hi Thanks for your reply .I am so sorry you are having the same problems as me on lower dose.My hands and wrists are painful again,and as I stood at the front gate yesterday with a jar of coffee I could not open,I could have cried.

However,I have learned from here that there are many younger and far worse than me,so must buck my ideas up and be positive.My son brought me home some diclofenac soluble from Cyprus last week and a carer friend has an unlimited supply of naproxen if needed.I keep looking at the boxes but am keeping them for really bad days.

Like you on baricitinib which was so good for you,it is harder when the pain returns than it was before as you have had such good results,and you miss it.

I will see what blood tests are like next week,and take it from there.I have a very good rheumy,who has looked after me for over20 years,so will get his advice.I too am due a review with him in February so will see then how things are.Keep as well as you can and keep me posted,as I will you.x

[Amnesiac3637 in reply to Doodlereggie]

We’ll compare notes next year when we’ve been seen and hopefully sorted out! Wishing you well in the meantime - keep taking the pills!X

[Pastels]

Hi, just read your post and so sorry to hear your struggling on the 100mg dose of Filgotinib, it’s so disappointing and disheartening when a drug that’s worked well is changed.

I’m 68 and at the moment prescribed 200mg of Filgotinib, I suspect when I’m seen at clinic in a few weeks it will be changed/ modified. I’m really hoping not as I’ve had a great response and really don’t want to experience all that pain and fatigue again. I think I would rather risk the side effects and be mobile and feeling well.

I really hope something is sorted out for you..

[Doodlereggie in reply to Pastels]

Hi thanks for reply.I wondered if I would hear from you !

I am with you totally on risks versus benefits,and at my age particularly would be prepared to take the risks.I have been researching why the decision on lower dose for elderly,and find the results very woollyto say the least.It seems to be based on not enough info on effects on the elderly rather than massive adverse reactions.Seems risk of health problems only in those with existing heart conditions or stroke or thrombosis or severe kidney disease.It appears in healthy people they are just playing safe,just as they did when they took us all off hrt abruptly all those years ago,which proved to be false! my rheumy has said he will put back to 200mg if blood tests show increase in crp,so I think I will have a choice at least.

Let me know how you get on,and ,maybe at your appointment ask what risks have been proved to be proved.Keep in touch x Joan

[Pastels]

Hi, well my consultant has retired and I saw a very nice locum who said my arthritis wasn’t perfectly controlled but my bloods were fine so carry on with the 200mg Filgotinib. He felt in striving for perfect we might upset everything. I’m delighted not to have my dose reduced. Have to say though I’ve had longer conversations on the bus! I was in and out in 2/3 minutes.

Really hope your dose of Filgotinib is increased, to me my energy and reduced pain is worth the risk of possible not proven risk way down the line. I completely agree about the HRT comparison!!

All the best to the Filgotinib crew 💪🏼

[Doodlereggie in reply to Pastels]

Thanks for your update.I could hardly believe it when I had a phone call from hospital pharmacy this morning while at church,to tell me that my 200mg filgotinib were ready to collect as soon as possible.!!!When I queried she said yes definitely 200 mg.Have not heard from rheumy or results of blood tests ,but he appears to have exactly the same attitude as yours.arent we the lucky ones.My friends asked what the YES was coming from the kitchen and told them I have just had the best Xmas present ever!Going to double up on 100mg from tonight as pharmacy said fine and they are too expensive to waste,so will use up supply first.keep posted and pain free as much as poss.xx

[Pastels]

I am so pleased for you, yes double up and have a fabulous Christmas. Sometimes our presents come in funny wrapping!!