Well...I'm on the road again, looking for new turn off.
Just had a call from a clinical nurse, who has decided - along with my rheumatologist - to change my biologic. I currently have Cimzia, which was really good for some time. I had a choice at the beginning of that road and chose it because I was told that it suited me as it was my hands and feet (still is) which were worse. I had to stop it and all my meds, for about 4 to 5 months around Christmas 2019, because it was discovered that I have scarring on my lungs and they weren't sure why. Obviously, everything went pear-shaped and I had a massive flare. Since going back on all my meds, things haven't gone well and it would appear that Cimzia has 'stopped working.'
I was told to start taking 90mg etoricoxib daily (I was taking 60mg until last week, when I had a course of 7 days 30mg prednisolone) which I started yesterday; yesterday was also my Cimzia day. I must say, I woke up this morning feeling a little better🤷🏻♀️I could walk and my hands weren't so swollen.
So....I had an appointment 23rd December (which the nurse told me today had already been cancelled and moved to 27th January- who knew???) and she has asked for an urgent face-to-face appointment which I will get a phone call the day before to tell me about. She intends to apply for a different biologic, after examining me - so I'm supposed to stop etoricoxib a week or so before so that I present as needing it! Am I a psychic 🔮? How will I predict this event 🤔? It is a skill which I haven't acquired in my arsenal of amazing traits 🤣🤣
So...which road do I take next? Which biologic? I had such a worry last time and things change in the medical world. I would really appreciate it if anyone could share their experiences with me....
Thank you kind people 😊
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Moomin8
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I’m sorry this trial and error is a royal pain in the 🤬sometimes I think is it me ??? I know it’s not but .... this das score thing really 🤬me off. How can you be tested on just one day ???? I would go on a mad cleaning spree do a bit of exercise to set things off 😂😂no but seriously I have taken photos and shown these in the best. Good luck hope you find the “one”
Good luck in finding one that suits you it’s so hit & miss , but to know it’s not working you have to suffer before they say no you have to go on another then it’s the waiting , not rheumatologist fault having to wait it’s just this horrible decease
Wow, how do you cope, it all sounds very complicated. Good luck on what can be found that is suitable to you. Really shows how we all react differently to different medications and how many medications react against each other. Hope they can soon find the answer for you.
Thank you for your kind words😊As for coping...I don't think we think about it - apart from when we're in the middle of it. The mind has a great way of painting out the bad bits. Having a positive mind-set definitely helps.
Just wanted to say thanks for the laugh re your psychic comment, they do like to make things difficult for us don’t they?! If you haven’t looked there already, the NRAS website has good info on each of the biologics. I’m on Benepali (entanercept biosimilar) which I don’t think works that well for me, but I wasn’t given a choice really. Good luck xx
🤔I've read the NRAS website info - it's really good - thanks. I was given a choice of 4 biologics a few years back, but I hadn't researched them so hadn't a scooby doo what to choose 🤷🏻♀️This time round, I'm far more proactive and informed - we have to be don't we? Whether I'll have a wide or limited choice, or hobson's choice...I don't know. If you don't think your biologic is working can you ask your rheumatologist to consider a change?
Hi Moomin, raised possibility of a change with my Rheumy when saw him in the summer but he wasn’t keen, said we will review at next appointment, but in current climate not sure when that will be?! I’m managing on a day to day basis but would like to hope that in the future I can be better than I am currently if that makes sense, still too many limitations for my liking. Let us know how your appointment goes 🤞xx
Thanks 😊 But...if you're not happy, push for an early appointment. I had to call my clinical nurse and GP to get myself heard. I had a blood test which my GP initiated to show inflammation.
I hope things work out for you , such trying time.
I've been on a few biologics and JAK inhibitors in the past 2 years none of which have done the job or I wasn't able to tolerate the side effects. JAK inhibitors have by far been the best, first Baricitinib, of which I had repeated viral and fungal infections and now Toficinitib, no infections so far, but I'm not convinced that it is working so well (I also take daily prednisilone).
But, they are easy to take, a daily tablet and have a good success rate.
You have been having a rotten time but at least you’re getting an appointment soon. I would trust my consultant to know what drug to try next. I’m on Rituximab which mine recommended because of the lung scarring that resulted from me taking MTX. It’s working really well for me but it has to be administered by infusion into a vein in a day case suite in hospital. Hope your next drug will work quickly and make you feel good again. 🤞🏻
I'm glad Rituximab is working well for you. How long have you been on it? I've actually been given an appointment next Wednesday (25th November) so hopefully will have an answer soon 🤞
I started on Truxima (a biosimilar to Rituximab) in May 2019. It’s given in cycles every 6-12 months. My last, which had been delayed by COVID, was in August. The disadvantages with the drug are it has to be administered in hospital and it’s a strong immunosuppressant. But I think it’s great as it works well for me. I have found that it has a cumulative effect so the improvements increase with each cycle.
My consultant said MTX can cause lung damage if it causes frequent chest infections (I did) and the RA itself can too. I ended up with a partially collapsed lung with the MTX. I still have some scarring now.
However I should add that I had some scarring in my lower left lobe anyway after a bout of pneumonia when I was 21. Whether it has improved a bit since coming off MTX I do not know/have not been told and should probably ask!
I have scarring on my lungs and a partially collapsed left lung. They discovered this after I had a quiet area in chest, a persistent cough (pre covid) and pain and they took x-rays. That's why I had to stop my meds - incase it was that causing it. However, the chest consultant decided that it was due to a fall I had about 6 months before and I had broken my ribs! An x-ray wasn't done when I fell...but who knows really what caused the scarring 🤷🏻♀️
Oh dear if only they had done an X-ray when you broke the ribs but, unfortunately, I think it’s rarely done though goodness knows why not. 🙄Well I hope it all improves for you and that you can get started on a new biologic treatment soon. Good luck 🤞🏻
That sucks being off your medication for 5 months plus you got an extra free gift of it fluffing up your biologic (I guess you don't need me reminding you of this 🙄).
I am a biologics virgin but think I am being assessed to see if I am eligible, not really too sure as to why I need my DAS score done as my whole body feels raging ! BUT my rhematology department have hooked me up with using the Living with RA app and they have access too and see my DAS scores from what I put in.
I know you aren't stopping medication at the moment but if they are saying you HAVE to stop maybe you could use the app and they could access from that rather than you having to turn all Derek Accoroh and trying to guess a week before you needed too !
It's all a bit crappy isn't it but I guess once you get back on the right drug happier days ahead x
🤣🤣Loved your reply! I had a phone call yesterday to say I have an appointment face-to-face next Wednesday 25th! So maybe my psychic powers are working on the powers that be!
Oh dear, this is awful. I started on my biologics experience with cimzia, then simponi, then rituximab, then orencia, none of which worked (in the 3 years of this quest to find my biologic there was endless pain and a few steroid injections so I do sympathise). Next up was tocilizumab - WOW. Been on it now for 3+ years and it's changed my life. Good luck
Hi Silverpixie, I was very interested to read about about your journey - thank you for taking the time to reply. I am worried that I am made to try many biologics out in succession...to no avail. Now...I have many questions - sorry in advance! 😄How long did you have to try each one before they let you move on? Did you/do you get any side-effects from Tocilizumab? How is it administered? Please don't feel you have to answer...it's a bit much - I know! 🤣🤣
I had no side effects at all from any of the biologics.
Cimzia worked immediately for 3 months and then stopped. Simponi the same. Rituximab had no effect whatsoever. Orencia was about 70% effective then this tapered off. It varied as to how long I tried each one before moving on. At the start of each one I had a steroid injection and the theory was that as that wore off the biologic would have kicked in!! Tocilizumab was different. I started in August with the accompanying steroid injection and by October I needed another steroid injection. My consultant wanted to give it a bit longer. At Christmas I had to ask for the metal strap on my watch to be tightened and that's when I realised it was working. I still have the occasional small flare (usually stress related) but now walk miles and I find that Pilates helps now that my joints aren't sore. My rheumy team are fantastic.
I inject myself with tocilizumab and have 4 weeks supply delivered to the local chemists so I don't have to take time off work to take delivery. Only downside is long haul travel as my medigenix bag doesn't hold it at the low temperature for long enough and airlines will only supply ice, not freeze the packs that go in the bag. But this is really a first world problem! I would have settled to be able to button up my blouse 4 years ago!
Wow! Thank you for being so open about your treatment - it's such a help 😊 So, it took about 5-6 months to kick in? I travelled with Cimzia and that was a pain...especially if you have a hotel stay in the travel plans. My Cimzia is nice, fat a pen, which I find easy to administer with my dodgy hands. Did you have to leave a window between Cimzia and the next biologic? As it's given biweekly, I would be due an injection next Wednesday. Do you have more energy too? I'm so tired all of the time x
Thanks....for some reason I read that as if you were introducing yourself to an AA meeting 🤣! Sorry, I have a really silly sense of humour- it doesn't take much! I'm in the South East/East...I never know!😅
I like you did really well on cimzia, my life returned to norm. But just like you I had interruptions of the med for one or another reason. The RA nurse said that it seem to be quite common, they noticed that the drug became less affective with each stopping & starting. I do feel for you as I have tried several drugs in the past 2 years, what with side affect or they just didn’t work for me, it’s so frustrating as you always start with such positive attitude willing it to work.. I’m sure your Rheumy will discuss your next options with you, I wish you all the very best, hopefully with a good positive start to the new year...,
Thanks for replying 🙂 I had heard this about Cimzia...just hope the next one works. My hands/fingers, feet, shoulders and hips are very sore...hold up- that's nearly everything!😅
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