Running out of treatments

I failed on Rituximab this year after 11 years ( 16 cycles). The team decided to try me on Tocilizumab (TCZ) seeing as its also a b cell depleter. It took them 14 weeks to get organised by then I was in a state so had a depo the day I started the TCZ. After 12 weeks I had flared again so had another depo. We agreed I would keep going with fingers crossed it kicked in. That was 4 weeks ago and I feel like the depo is long gone. I'm incredibly stiff first thing that only anti inflams a long hot shower and a walk fixes. I don't get on with any pain killers but might try a low dose of amitriptyline again although that dries my mouth out badly.

I feel newly diagnosed again, this flare is such a shock after 11 years of doing better. I've had my RA 26 years and it's always been severe and hard to treat. I'm worried I've had my time with Rituximab and I'm never going to be as well again.

My doctors are discussing me tomorrow but I think my only option is to go on prednisone ( oral steroids). I have had some dark days on that drug and not looking forward to that again.

Fed up.

[ruth_p]

Really sorry to hear you are suffering at the moment, hopefully they will come up with a plan for you. Fingers crossed they don’t put you on pred. I was changed to Deflazacort rather than pred and I had less side effects. Good luck

[Hidden in reply to ruth_p]

Thank you for your reply Ruth. I don't know Deflacort.

[Troygirl in reply to ruth_p]

Thanks for the info. I have been on prednisone LONG TERM and have bad side effects.

I just researched a medical paper and it pretty much states deflacort may be better for long term use!

Geez you think doctors would read up on this stuff!

My RA doctor KNOWS he has given me Cushingoid from so much prednisone but still hands it out like candy!!

ncbi.nlm.nih.gov/pmc/articl...

[ruth_p in reply to Troygirl]

I had cataracts from pred and needed both my hips replaced too. I was put on pred at 14 and ended up with a big moon face. Once I changed to Deflazacort I started to lose the moon face and lost weight. It’s worth asking your rheumatologist about it.

[Hidden in reply to ruth_p]

I definately will Ruth. I've had the moon face a few times, awful isn't it.

[cathie]

I’m so sorry to hear this. Be careful with your blood sugar levels if they put you on pred. I’ve been on rituximab for a few years now and can appreciate how hard it must be if it fails. Can you say exactly what happened? There are new meds coming through all the time so I really hope they can find something longer term for you.

[Hidden in reply to cathie]

Hi cathy

They said the average length of time on biologic is 4.5 years and I did incredibly well to get 11 years on it. I knew it would stop one day. They've decided to give me another depo so next week I will be chasing that at my docs because I'm out of area and not well enough to get to my rheumy unit. Hubbie normally has a day off but he's just started a new job so that's out.

[cathie in reply to Hidden]

I was 10 on infliximab so I’m lucky too. I hope they find you a new meds to keep you well x

[Hidden in reply to cathie]

Inflixinab was a wonder drug for me Crathie but it gave me lupus 🙁 so that was the end of that!

[cathie in reply to Hidden]

So many difficulties x

[AgedCrone]

Gosh what a blow....I have been on Rtx since 2016....& although it is working well....I have always wondered how long it will last.....after all the failures on Dmards it's hard to relax & believe anything will last forever.

I do hope your doctors come up with something...maybe one of the newer drugs will help?

Do keep us informed on the treatment that is recommended......sincerely hope the medics come up with a solution for you very soon.

[Hidden in reply to AgedCrone]

Thank you aged crone.

They've decided to keep me going on TCZ give me another depo ( my 3rd in 16 weeks) and review in December. Fingers crossed TCZ kicks in at the last minute 🤞.

[oldtimer]

It can be difficult to see a way forward when in the depths of having a flare. But hang on in there as for most of us there is a way forward, even if it takes a bit of time to find it.

I've had to adjust to be on low dose prednisolone as well as azathioprine, as I have had reactions to several other drugs, but I'm coping well with getting on with my life.

[Hidden in reply to oldtimer]

That's encouraging old timer thank you for you optimistic words.

Your messages have definately helped.

[Maggsie]

I so feel for you ❤ I had 15 great years on Enbrel and was devastated when it failed when I was switched to benepali. 2 years down the line I'm wating to see if Rtx will work for me after my first lot of infusions in June/July.

Just wondered if your failure was down to switching to a biosimilar or you were just unlucky?

Hope you start to feel better soon.

[Hidden in reply to Maggsie]

Hi maggsie

My fingers and toes are crossed for you and RTX.

I didn't ever have the biisimilar of ritux it was just my time to come off it. I had 11 fairly good years. I did have the odd flare and it took a few cycles to kick in but not too bad. I already had some joint damage when I went on it in 2007.

[Pulfs]

I to was wondering if switching to a biosimily was the reason as I've been switched and have noticed that it seems to wear off quicker and symptoms return sooner.

Feel for you as mine is 25yrs since diagnosed and would hate to go back to those dark days fingers crossed they help you sending gentle hugs your way .

Take care xxx

[Hidden in reply to Pulfs]

Tell your team pulfs. A member of my choir has AS and she was switched to a Humira biisimilar and flared so they've switched her back and she's much better. They are similar but not the same!

I never had the biisimilar.

[Pulfs in reply to Hidden]

Thanks I'll see what happens with this next round and keep a note on how long I feel good xx

[Hidden in reply to Pulfs]

Good idea 👍

[Jackie1947]

Sorry about this. I was on retux for many years but last autumn after first infusion i had an almost psychotic episode so couldnt have 2nd round. They suggested it was the pre steroid infusion. So this spring tried again minus steroids but i became so unwell physically it was stopped. Apart from sulphzasine thats it. Not investigated anything else yet as wanted a break. Tbh i havent missed it. Theres a lot i cant have because i had a had TB as a kid. Hope you find something that makes you feel better

[Hidden in reply to Jackie1947]

Sorry to hear about your issues with drugs, it's hard when there are some you're not even considered for. I hope you too can find something Jackie. At least we have steroids. My poor great great grandmother didn't even have them.

[Hidden]

I forgot to say I didn't get any amitryptiline in the end I need a low dose because it dries out my very dry mouth too much and the gp said the syrup is too expensive at £136 for a 150ml bottle.

Hopefully once I have the depo I won't need any 👍

[cathie]

Sorry but what is depo?

[Hidden in reply to cathie]

An intermuscular injection of depomedrone which is steroid. It releases the drug slowly over 3 months

[cathie]

Thanks

[Neonkittie17]

So sorry to hear this Kiki and I hope it starts to improve for you and you feel much better soon. I know you were very helpful to me when I was starting Rituximab early 2014. I am similar with RA since 1995 and been very hard to treat at time’s also in the past. Think I’ve had 8 or 9 rounds of RA treatment now. I never had a sniffle or infection or side effect at all for over three years then end of 2017 I got pneumonia and seem to have had a chest infection every few months since then but as Rtx has given me the best RA results the rheumy wants to keep me on it. (I see a respiratory consultant every 3 months to check I am alright. Spirometry and CAT scans all clear.)

I would think you felt similar when starting Rituximab that it may not work well for you .. but it worked well. So can something else. It is awful I know when your med stops working. 😢 I felt exactly the same. Sadly when Mtx alone and also Sulfa lost their efficacy after many years when I was in the early days of RA I thought nothing else would work. It did. I hope your TCZ is going to work soon for you. I admit I don’t know how long that one takes to have good effect. I too needed oral Pred in 2015 as the rheumy team didn’t get move fast enough to get me in for my second round of infusionS of Rtx after being made to go longer than twelve months on the first. It was something I didn’t like either but I couldn’t get out of bed and move and my back was aching so bad and I was sleeping for 18-20 hours a day so I was glad to have less active rheumatoid flying round my body making me so tired. I did have a long taper off oral Pred which I feel now I could have not had such a long taper but ..... Can you try a shorter course of the Pred and hope you don’t need a longer one as the TCZ will have started to work by then? Crossing fingers for you and sending gentle hugs. Let us know how you are. X

[3LittleBirds2]

Hi , sorry to read that you too have failed on Rituximab, I remember reading your positive stories about it when I was first prescribes it and they helped me.

I have failed after 5 cycles which is a shame as I’ve done well on it.

Hope you’re now on a treatment that is working. X

[Hidden in reply to 3LittleBirds2]

Hi there

Oh dear you didn't get long on it did you? That must be very frustrating. I started Tocilizumab in June unfortunately I've needed 4 depo injections so it's not worked. Going to start Baricitinib soon which is a daily tablets!

What you on now? Is it helping? 🤞

[3LittleBirds2 in reply to Hidden]

Yes, it is but at least I had nearly 5 years with it, it changed to Truxima on my last cycle..coincidence..who knows 🤷🏻‍♀️

I had a phone appointment yesterday and they were talking about Baricitinib or Abatacept for myself too, but they’re restricted at that moment to what they can prescribed I guess for new medicines, so they’ve sent me info on ADALIMUMAB which is on their list, so I need to decide what to do but not much choice at the moment or I wait until this is over.

I hope you get a good result from Baricitinib. Many Thanks

[Hidden in reply to 3LittleBirds2]

Choice of 3 drugs is pretty good. I hope what ever you choose helps you. I'm not sure if I will still get my baricitinib. Not sure if people are getting new drugs at the moment or not. Any one know?

[3LittleBirds2 in reply to Hidden]

We can get them but only ones on the list they can prescribed...Baricitinib was the one they were going to put me on but they can’t prescribe it for new patients at the moment. As you’ve already had it prescribed you may be ok..but hopefully I’m sure they will let you know. Take care x

[Hidden in reply to 3LittleBirds2]

I havnt had any yet. I'm waiting to hear. Only saw the doc a few weeks ago. But I was advised to stop Tocilizumab.