Steroids with biologics?

Hi all. It’s been a very long time since I’ve been here. I’ve been trying to manage my bipolar better, and so have been avoiding places on the web about being ill! But I hope you are all OK, and not minding me coming back for a one off.

I’d like a little bit of advice. I’ve been on Benapali for close to five years now, and up until about ten months ago, all was going well. Just after Christmas, I slipped a disc in my back (due to my own stupid fault), which led to a long period of sciatica. It also kicked off a bad spell with my arthritis, which seems to be getting slowly worse. I’m assuming that was because you put extra weight on this or that joint when your back is bad, and so causes extra strain etc. I was hoping it would get better during the summer - mine’s nearly always better in the summer - but that hasn’t happened.

Anyway, I have an appointment with my consultant on Monday. When I have talked to the biologics nurses over the last few months, they have offered me a steroid injection in the back (which has never worked for me) or a course of steroids, which I am reluctant to have because of the weight gain. I’m too big as it is!

What I’d like to know is if anyone has had a PsA flare-up like this, had a course of steroids for a month or two, and then continued on the same biologic as before and things have been fine? Staying on the same biologic is going to be far better for my mental health, and so if a course of steroids might allow me to do that for a year or two, then I would go for it. But if it’s just delaying the inevitable, then I’d rather just change the biologic if given the choice.

What are people’s experiences of these things? Is it possible to knock a flare-up on the head with steroids and then continue on the same meds and all has been well for a while? I have had steroids before (and they worked well), but that was back in 2017 before I started the biologics.

Many thanks.

Yes, absolutely! The last time that I was on steroids for a stretch wound up coinciding with a change in biologics. I had covid, and Enbrel was already pooping out on me. Covid was the final straw, and I wound up on low dose steroids for about 4 months.

In the past, I’ve used steroids during a flare. It’s knocked down the inflammation nicely and put me back on the right path. I know that I would not opt for the steroid injection in the back, but that’s largely because I’ve had them in the past and haven’t had a good response. It’s good to see you back here, but I’m sorry that you’ve been in a rough stretch.

Thanks, Stoney. Good to hear from you. Oddly my inflammatory markers haven’t been particularly high, but the arthritis is a pain in the rump, nonetheless (and the knees and the wrists etc). Despite the inflammatory markers being “ok,” I have that horrible fogginess/grogginess feeling that I had when it was up over a hundred. I seem to be sleeping half my life away!

I have been there. My inflammatory markers are never particularly high so we always go based on my complaints. So if I were to notice a significant change in how many joints are swollen and red and pain levels then we would adjust. Even last time when the biologic failed, and I was using the prednisone to manage my back and tide me over, my inflammatory markers were not high.

Before I started on the biologics, the inflammatory markers were well over a hundred, but I think it was just 10 when I had my last bloods in July. I had some more done last week ready for the meeting with the consultant on Monday. But I can’t remember whether they do CRP or ESR, so that’s not much use. Going on your own experiences, I shall try and push for the steroids on Monday, and then we can look at biologics if they don’t work, or if things get just as bad again in a short space of time. It does seem the most sensible option to do it that way around, and to give the Benapali one last roll of the dice, so to speak!

Thanks as always for your wise words! :slight_smile:

Well, steroids it is, for now. But the consultant does seem to think that my association with Benapali is likely to be coming to an end. I think it’s fair to say that he doesn’t think the steroids will do much good because the places that hurt aren’t red, hot, or particularly swollen. They just hurt! So, am trying the steroids as a kind of last chance saloon at staying on Benapali, otherwise it’s a move to another one of the same family as Benapali that is taken fortnightly - but he said that at least that meant that I probably would be fine with regards to side effects etc. He said the one I would go on began with A (that’s all I took in!), but I’m guessing that means it’s Humira, as that’s taken every other week.

Have we heard much about side effects for any of the biologics - I don’t seem to recall a great deal about it on here when I was visiting regularly. I know there’s reactions at the site of injection and the infection risk, but I don’t recall much beyond that when it comes to day to day side effects (headaches, stomach issues etc).

Anyway, I have to ring him in about ten days (first time a nice young doctor has given me his phone number - sadly it turned out to be his secretary!) and let him know how the steroids are doing. If they’re not having the desired effect, we move forward with the next bio.

Thanks again for your help. :slight_smile:

I know the roids can be tough on the mental health. I have suffered from drug resistant depression badly for 30 years. It is much better now (I have a VNS implant), but I have had to take roids on and off over the years too. They always aggravated my depression. I can take a Dose Pack now and it only affects my depression a little. I had to do the daily roids for about 6 months when the PsA started. I managed but had to get off them. I am one of those lucky people that get the side effects listed under “other less common.” Daily roids cause me incredible low back pain, terrible. So I wasn’t gaining anything in the trade off and came off them.

If you have a good doc that thinks an ESI will help your spine, by all means, let them do it. I only have two “functioning” vertebrae in my neck. And they are in bad shape. I have to have an ESI between them once or twice a year. When the shot is done right, it really works. I have a great doc that does them and every few years he misses and it doesn’t work. He has learned to trust me when I call him and say it missed. My pain is so bad in my neck, he will do another one in two weeks if he missed. Not many docs will do that. It’s not on the recommendations list.

Me, I would do the SI before I would the daily roids. But, that’s me. Good luck.

I tore a rotator this year and have had two steroid injections in that shoulder. Honestly, if the PsA is acting up, it will help my body a little.

I’m two weeks post COVD right now and all my joints hurt, even my toes and fingers. I emaield my doc and asked if he had seen that post COVID in his patients. He said yes and called me in a Mederal Dose Pak. He said that has been helping and that last 6 days.

Good to see you again @darinfan. Sadly for me Benepali only worked for me in a 3 month stint in the middle of being 11months on it. I next tried a humira biosimilar. It however simply didn’t like me, so we stopped it after 8 weeks and finally I tried Cosentyx which has worked like a dream for the past 3 years.

I understand that’s not quite what you wanted to hear. However loads and loads of people do extremely well on humira biosimilars too. Keep positive.

Thanks, Poo. I think I’ve been lucky for Benapali to work for five years, to be honest. What kind of side effects did you have with Humira, if you don’t mind me asking?

I knew from the first injection it didn’t like me. It was a visceral feeling which I found really peculiar since I never felt like that when I injected Benepali. The humira biosimilar I tried was called Imraldi.

Basically it made me poo for England, not diarrhoea but significant output which was tiresome. Worst of all it reignited my asthma which had been pretty dormant for 20 years which was more than tiresome. And lastly it made feel emotionally like I was wading through some sense of impending doom. With that bit I knew it was simply med induced and not at all real but that was annoying too. But truly from the first dose I just knew this one wasn’t for me at all. Again all this isn’t what you want to hear. Loads of people do really well on it though, remember that.

When I tried Cosentyx, I had no visceral feeling on the first injection, quite the opposite actually. I instantly felt more hopeful and positive about it. Which turned out right too.

I felt the same way with sulfasalazine and mtx. I knew from the first week that it wasn’t going to work out, and that was borne out in blood tests and outbreaks of hives etc. Often our gut instincts about what is right and what is not for us are on point, even if we can’t explain it. I’ve had a good run with Benapali, though, and whether I change next month or in three or six months, I certainly appreciate the respite it gave me for so long. And it Humira works or not, it gives hope, at least, that I’ll find another I can get along with!

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