I’m been on enbrel or rather its biosimilar benepali for 12 weeks now and it’s not doing much. It did initially in the first 4 weeks and then I had to take a break for just one week (for teeth issues) and it just seemed to go sulk and do nothing ever since. And my review appointment is on Monday.
I’ve spent the day researching all the alternatives, I could possibly be offered. As an aside, I’ve found it as irritating as checking for the name of a plant you might like in your garden as of course what you might consider to be a tulip or a daffodil is called something completely different when you research it. So humira is adalimunab, remicade is infliximab (and don’t check my spelling on either!) etc etc. It needed both the phone and laptop to keep on top of which is actually which as I worked my way through lots of thoughts by lots of scientists.
I’ve got increasing symptoms mainly in my left foot and knee whereas before it was always just my right foot and no knee issues. And I think I’ve something like bursitis in my hips and/or possibly some increasingly significant spine involvement and I’m completely and utterly fed up with being so incredibly exhausted again.
So I’ve been learning again about tnf-a inhibitors versus the new drugs which are IL-12, IL-17 and IL-23 inhibitors and wondering which for my PsA will really be the more effective. And learning that enbrel is a circulating receptor fusion protein for good measure too. And of course getting lost in most of it. And realising also that as all of these drugs are new, some far more new than others that essentially means which works best for which symptoms truly isn’t known yet given they’re all too new anyway.
So despite amusing myself for the better part of the day in just learning (which actually has been fun if you can call it that) and possibly frightening myself silly with all the possibility of side effects, (that’s always a given) I’m left with the fact that if one fails enbrel you might do a lot better on humira but could do an awful lot better if I added mxt to the cocktail (which isn’t an option for me). Or try something like Cosentyx which is an IL-17 inhibitor (Talz is another one of these) which is different to tnf-a stuff and newer and seems to be causing quite a lot of excitement of the positive variety. People seemed to be getting very excited about an IL-23 inhibitor but I never did identify the actual name of the drug for that one, let alone work out if NICE here in the UK had approved it anyway. The tiredness got the better of me, I think.
Anyone got any further thoughts? I like to go to my appointments armed with at least some information and this next one has to be about a change of drugs hence my day on my computer trying to work out which was what.
Leflunomide might be a different option if mtx isnt an option, depending on what the issue was.
Yeah, I did a ton of research years ago when I was still breastfeeding my son, and knew that I needed to up my game. Ultimately it was too soon for a biologic at that point. I am just glad that there are now so many different options. If my present biologic needs to be discontinued it’s possible that will boot me out of the tnf inhibitors as a class.
There are several biologics in pill form now (otezla, xeljanz). I tend to think a pill would be easier than an injection, so, if you’re looking to make a change, maybe look in that direction.
I don’t have PSA so I have no words of wisdom on how any of them work, my experience comes from working in a pharmacy for 15+ years.
Don’t really have an opinion, but does knowing the names of the drugs help?
Leflunomide works well in some folks, but it is very toxic to the liver and my rheum told me “With mtx you should not drink. With leflunomide you must not drink.” I was relieved when it didn’t help and I could get off the stuff.
Thanks @azurelle. Much depends though on whether the pill form is authorised by NICE here in the UK as if it’s not, it’s then not available - end of. And I haven’t found the injections difficult so far at all, other than they take up room in my fridge. Given my DMARD is sulfasalazine which for me is 6 tablets a day, any reduction in the number of tablets to take is sometimes very welcome too. I hate those times, fairly rare, where I go - have I taken them? Oh gosh I can’t remember and have to sit it out till next dose time…
Thanks @Stoney. Mxt side effects completely incapacitated me and unless I can be ‘supported’ through that incapacity it’s impossible for me to take. That level of such incapacity is also considered fairly unwelcome medically so it’s not something my rheumy is willing to offer me again. As for leflunomide, yes it’s an option but the ‘never’ to alcohol and the fact it stays so long in one’s system was not and remains not a way I want to live my life. Having said all that though, the one thing I didn’t research yesterday was whether these newer and non tnf-a drugs banned alcohol or said anything about alcohol.
Further sulfasalazine did work well for me albeit briefly so the thinking was that it continued to be of some benefit and should remain the DMARD attached to my biologic rather than switching it. The thoughts at the time I was prescribed the biologic Enbrel/Benepali, was that a DMARD should remain attached to it, so I was left on sulfasalazine. A friend of mine is doing really well on Cosentyx but her DMARD leflunomide remained too.
For me it was a bit simpler - I had suspected IBD as well, so that limits the number of biologics I can take that will treat both, but I generally went with the oldest, most tested in the category (Humira).
I went for about 9 months on Humira as a stand alone and the PsA was okay. It does seem to be a very good drug for many, as does Enbrel. (Had to go back on Mtx to control psoriasis).
Incidentally Poo, I’ve had a letter from ‘our’ clinic to say that a biosimilar is on the cards. I’m sure that’ll be fine, just saying in case you want to research the biosimilars as well!
And I do agree with you, one advantage of injections is that they are that teeny bit more memorable than pills. I quite enjoy injecting myself, weird maybe, but gotta get my kicks somehow.
Interesting. My present thinking is that if I’m not responding well to a tnf-a blocker maybe I won’t to any such drugs, hence being interested in IL attaching ones. My research yesterday did throw up that if you don’t respond to enbrel you might to humira and visa versa but sadly that if you’re not really responding to tnf-a blockers you just might not anyway. I found that quite sobering really and sad, as I hadn’t really fully appreciated that before.
It made me angry actually that I was told to stop benepali for my tooth issue ‘just in case’ too. As it’s clear now that if you mess with your initial 12 week trial of your first biologic, you do seriously weaken your chances of being successful on it as I think I posted about back in August. So it appears to me more care should be taken around explaining that properly initially (as well as the ‘what you can eat’ issues that I got so excited about initially ). I must say though, I remain fairly shocked at the lack of coherent explanations of such issues as ‘don’t mess if you possibly can with your dose in the first 12 weeks’ and be mindful of what such immunosuppression does with your gut’s ability to fight off food poisoning issues etc etc.
This is something I’m intending to explore fully tomorrow in addition to the issue of ‘what’s next’ for me too. We’ll see what happens but I’m betting the change will be to humira which after your experiences Jen is more of a worry.
Good to hear Sybil. Thankfully psoriasis presently is a non-issue for me and yes I was thinking it would be the biosimilar of Humira I’d be offered rather than it.
Like you, I quite enjoy injecting myself too, what does that say about us though???
It certainly isn’t any issue for me and wouldn’t be going forward.
In hindsight Poo, my experience with Humira really doesn’t have to be a worry to me, or anyone who read my post. The real problem was that because there is a lack of documentation of these mild reactions like mine, I really didn’t suspect what was going on. Now anyone who followed that thread can trial some time off Humira if they are worried - I was markedly better in two weeks, 90% in 4, and with the help of Cimzia, I’m positively superwoman now! And I did get a very good 3-4 years out of Humira before that negatively impacted my life - that was the time that I was well enough to be working full time, travelling regularly to remote West Africa, with a small child to look after when I was home. Though the side effects were a difficult experience, they are rare and reversible, and particularly if I had known that they may have been due to Humira and stopped earlier, manageable and not too scary. Things do get more complicated if there is any history of MS in the family, so make sure your family are well quizzed!
That’s the problem there is a history of MS. My father’s uncle had a son who died of it - accelerated MS. I was very close to him. I was told that relationship wasn’t ‘near’ enough but…
Flag up the MS link for sure Poo, but I wouldn’t worry. My Mum had severe MS … my own experience hardly constitutes a whole case study but I’ve clocked up a fair few rheumys now and none have been overly concerned. I would have thought MS was common enough, sadly, for a very large number of people to have a family connection as removed as the one you mention.
Yep, just make sure you raise your concerns about it - talk it through, even if the risk isn’t terribly high, till you are comfortable you and your rheumy can make the right decision for yourself.
I didn’t have any improvement on Humira so (eventually) got switched to Simponi which I’ve been on several years now. I have it as mono-therapy as I can’t take any of the DMARDS. It’s ok, reckon I could be better and could be worse, but our mutual PsA clinicians aren’t convinced on balance that I need a change yet. Options that were discussed: otezla/apremilast (not an option I would accept as I know I’d never get through the GI issues), sekukinumab (if I have prominant axial symptoms) and ustekinumab.
Well, I barely know where to start. It was a truly lousy appointment on all fronts.
First I had transport problems which made me miss my booked train but thankfully didn’t make me at all late for the appointment solely due to the fact I’ve such a horror of being late anywhere, I always make sure I arrive far too early, But being corralled in London Bridge Station for 20 minutes standing up against someone’s less than fragrant armpit is an experience I never want to repeat, ever. You do wonder why they spent billions rebuilding the station when it still can’t cope with the volume of people going through it at 8.30am. Note to self, never ever get the slow cheaper train to London ever, ever again.
And then at the appointment I was told I was ‘better’ than I was in June, when I clearly wasn’t. Most especially as it was Bath who prescribed a short course of steroids only a month ago too. People who are doing ‘better’ usually don’t need to be prescribed a short dose of steroids do they?
The physical examination was done by a nurse who forgot to check several joints in my feet and whose technique was seriously lacking. Then I saw a consultant that I hadn’t seen before who seemed sadly hooked on the issue of blood tests (not that he then knew the results of the ones taken yesterday either) and then told me I was ‘out of time’ when I started discussing how Benepali made me feel. I was the first patient of the afternoon session, I arrived 20 minutes early for my appointment and was taken early too, so I simply couldn’t have been ‘out of time’. I’ve actually never been told any previously at any medical appointment ever, that I was ‘out of time’. Not even at a GP appointment.
When I got on the train home, I just cried. Just sat there crying, all the way to Paddington. I’ve never cried after my appointment at Bath, I might have cried waiting for the appointment to come around, but I’ve never ever felt like crying afterwards. I’ve always felt so full of hope actually following an appointment in Bath but never felt this horrid depressing sense of total and utter defeat that I felt yesterday.
I will await the arrival of ‘my letter’ and then take it from there. I doubt I’ve ever felt this angry frankly.
@Poo_therapy Soft cyber hug!! I’ll be sure to say an extra prayer for you today. I’ve always heard “it’s going to get worse before it gets better.” Praying that “The better” is on its way to you.
). I must say though, I remain fairly shocked at the lack of coherent explanations of such issues as ‘don’t mess if you possibly can with your dose in the first 12 weeks’ and be mindful of what such immunosuppression does with your gut’s ability to fight off food poisoning issues etc etc.