The rapidness of me going through these is getting concerning. Very very concerning. I’ve presently failed Benepali (a biosimilar to Enbrel) and I’ve most certainly failed Imraldi (a biosimilar to Humira).
So next up is Cosentyx. At 300mg because I’ve failed two anti-TFNa’s.
Here’s my and my rheumy’s thoughts for whatever they’re worth. We believe Benepali got overwhelmed by my immune reaction to three compressed fractures of my lumbar spine. And it just failed to cope. It took some time to get going for me but I had three truly fabulous months on it from January to March this year until these wretched lumbar fractures. I now have bone density issues sadly.
Move on to July when I started Imraldi. I could tell instinctively after the first injection - this med and me weren’t going to get along. By the second injection I was 100% sure it wasn’t for me. I perservered because we simply have to complete the trial here in the UK if possible. And it was possible even if I felt yucky.
It inflamed my bowels something rotten. Manufactured poo frankly. That’s been miserable. It also affected my mood. I kept wading through an impending sense of doom. That’s a recognised side effect affect apparently. And today I’m having to attend an asthma clinic for the first time in around 10 to 15 years. That can also be a side effect. However I first got asthma when I was 18 months old and tend to be an autumn asthmatic and it’s autumn now so my jury is out on that one. But it’s interesting I haven’t suffered any asthma issues for the last 10 to 15 years too. That’s 10 to 15 autumns as well.
And it failed to do anything for my PsA. Joint count and joint severity is now the worst it has ever been. My hips are totally crap presently - really annoyingly.
So wish me luck on the next one. I think I’m going to need it. Today I’m not going to work, I’m simply going to take my dog to the beach and walk. At least the beach is flat and I can walk flat presently. And I certainly need the head space.
Oh no! That’s not good. The only way is to try everything you need to try … Cosentyx, lifestyle stuff, everything. Something will give, Poo.
Did Dr Ellie say that a sense of impending doom was a side effect of Imraldi? I thought it was Brexit (and no, that’s not a joke, I really am concerned about what’s afoot).
Enjoy the beach and all. You know where I am if you want to talk.
I looked at the tide times for where you live as you might have got a phone call. Sadly it’s high tide with you this afternoon. At the other end of the county the tide is going out this afternoon, so that’s where I’m headed. It’s a nice day too. so should be restorative.
I have severe enthesitis. In particular, my bilateral plantar fasciitis, my IT band, my neck, my hands, my tennis elbow. Cosentyx has been good for me. I hope you do well…
Hi Poo, so sorry to hear things aren’t going well for you.
We’ve had a similar path with the biologics - I’ve been through Benepali and Humira too. Interestingly my rheumy decided not worth trying another anti-TNF and tried me on Tofacitinib (Xeljanz) next which is a different type of drug (can’t remember what!).
However, this hasn’t worked for me either and destroyed my neutrophils to the point where I was getting really concerned about the risk of encephalitis again.
So, I decided to come off everything and see what my baseline is to help me decide whether any of these drugs are worth the risk. I’ve been drug free for 7 weeks now and doing okay, more sore/stiff but manageable with light exercise and moving regularly. Rheumy reckons it’ll take 3-4 months before it’s all out of my system.
I’m really lucky and currently have a milder form of the disease, so not suggesting this for anyone else, just seems right for me at the moment.
The point I was clumsily trying to make for you was whether you should be trying a different family of drugs, rather than more of the same?
And also I take exception to your statement that “I’ve failed two anti-TNFs” - they have failed you!
There are many more drugs out there, don’t give up hope. But failing that, beach dog-walking therapy sounds perfect
Well at least this one is only concerned with interleukin 17. It certainly seems the blanket anti-TFNa ones don’t work for me, the humira biosimilar being downright nasty to me. The enbrel biosimilar was kind to me - it just didn’t last the distance. So I’m hopeful. Sadly I do need something as I’m getting worse and worse now since it’s very clear Imraldi was doing next to nothing PsA wise. So effectively nothing has been working since June or possibly earlier which is a good while back. And I can feel the difference too.
When I think back to the period from January to March this year when Benepali was working so well I can’t believe how crap things are now. I so want to be there again. So I’m very happy to try Cosentyx.
The beach dogwalking therapy was excellent yesterday. Fiercely windy - tide out - miles of hard sand as far as the eye could see and virtually empty. My idea of paradise. The dog’s idea of paradise was me throwing his ball there. We both had a wonderful time, even if getting out of bed this morning was a bit too hard.
Wow! Life is not at its peak for you right now. Keep hoping. May your original poo-therapy help! (I think that was from you working in a barn?). Let’s hope for a break through in the medical world that puts this dis-ease to rest.
I feel your frustration, concern and anxiety. I’ve been failing on my biologics about every 13-15 months. I’ve been on Simponi since April 19 and I’m getting worse.
I hope you beach walk helped clear your head and reduce your anxiety? When I get anxious about failing biologics, I tell myself: you have a very profitable disease and they continue to market new drugs for you
Please let us know how you’re doing and reach out to me if you every need to chat.
The original ‘poo therapy’ was volunteering at a farm which deals with rare breeds of farm animals. It is also a home and workplace for adults with mental (primarily) disability and a tourist attraction - for the animal residents only! I used to mostly muck out pigs early on a Sunday morning before it was open to the public and grew to really love pigs actually. Extraordinarily intelligent creatures. But it was all hard physical labour done with a shovel, fork and a wheelbarrow, well beyond my capacity first thing in the morning now. But I really miss it, I miss being around farm animals and indeed tending to them. I never but never came away from there without a great big smile on my face. Hence calling it ‘poo therapy’, as it was simply just marvellous for my soul anyway. Bending down to pick up the dog’s bowl is hard enough presently… sigh.
And yes let’s hope this next one just gets on with its job without any drama. I’m very ready to just be able to get on with things with lots more ease and indeed lots more fun.
Yes I am concerned about why my body isn’t doing well on biologics yet. But whilst I think my PsA is bad I do know of others whose disease progression is so rapid and so incapacitating. Mine presently is only slowly getting worse and I’m coping - so that had to be a benefit.
Hi Frances, I’ve been on Simponi since spring 2014 and it started to work super fast for me but also then went through the “getting worse” phase. My rheumy increased me up to the 100mg dose around the 18 month point and, as she predicted, it picked up the pace again. Even at that point it still took a good six months for it to get to grips with my knees. Four years on I’m still doing ok at the higher dose. Something to ask about before canning it?
@Jules_G Thanks so much for sharing your experience. I will definitely discuss increasing the dose with my rheumy, although it hasn’t ever worked as well as other biologics for me.
It’s so hard to find anyone that concurs!!! Ppl talk about their JOINTS hurting. It’s not my joints it’s all the attachments!!! I WAS getting super painful massages where the girl would dig deep into my tendons. It seemed to release them for a while and I felt really good for a day or two. But then it came back. It was hard to endure the painful massage for 1 or 2 days of relief and do it all over again the next week. I call them my crunchy tendons. They are just getting hard and that ends up causing all the bone spurs at that attachment area. Ultimately I think we need to decrease stress. Yoga, meditating…I think that’s the key. And staying away from carbs. But I’m too tired to do all that . I think I may try to drink an alcoholic drink once a day… But I keep forgetting
My PsA issues are also all tendon/ligament related: my hands, fingers, feet, toes and my right leg IT band. Going to physical therapy for my IT band because I can’t walk up and down stairs normally. Have to put both feet on each step - the IT band hurts like a son of a b****!
Well, I guess misery does love company…knee pain loves foot pain and foot pain loves shin pain etc! I’m way behind most of you and on day 3 of Sulfasalazine added to the MTX. No biologics yet. Really getting the yoyo of feeling good enough to be really encouraged and then walloped with new and worse pain and then a few good days. Is it “normal” to have muscles close to the sore joints start to ache? My knees, feet and elbows are bad for two days but it sort radiates into the thigh muscles…like a Charlie horse. Then my elbow pain goes into the forearms.sigh
Also, I feel like people think I’m nuts. I’ll attend functions and “perform” outwardly ok even though things are really screaming at me or have a good day followed by a bad few days and I know they are thinking, “I just saw him yesterday and he seemed fine…”. No one knows other than those who have it.
@Amos " People with psoriatic arthritis often develop enthesitis, or tenderness or pain where tendons or ligaments attach to bones. This commonly occurs at the heel (Achilles tendinitis) or the bottom of the foot (plantar fasciitis), but it can also occur in the elbow (tennis elbow)."
They are just getting hard and that ends up causing all the bone spurs at that attachment area. Ultimately I think we need to decrease stress. Yoga, meditating…I think that’s the key. And staying away from carbs. But I’m too tired to do all that 
