Hello all!
I started Humira a month ago (about to do 3rd injection). No loading dose. Was on Tremfya and it stopped working after a year. I also take MTX every week, 4 tables… so 10mg. I usually take MTX on Monday night and do the Humira injection, every other week, on Tuesday.
Problem: I am experiencing painful intestinal cramping and daily diarrhea, plus nausea. I did not have this issue with MTX before. It has been 4 weeks and I am baffled. One of these weeks was also my menstrual cycle (sorry boys) and that made it worse.
Any advice would help. Thank you.
I’m just wondering if MTX just doesn’t get along well with other biologics etc. I was on Humira and MTX for about 6 months and it was working but I was “off” digestive system small sores on my scalp…So I went off Humira and on to Rinvoq. While waiting for it to work, I was aching and flu like so I just quit MTX on my own and very quickly all lousy side effects went away. I think that with the effectiveness of newer meds, MTX may be ok alone but is unnecessary. NOT a medically proven theory, just my own. Maybe quit MTX for a while and just go with the Humira. It wasn’t scientifically designed to need MTX so it’s quite possible that it is even better as a stand alone treatment. The common practice is to start people on MTX and then add biologics if MTX isn’t effective enough. Some of the side effects of MTX are similar to PsA! I am open to being corrected if I’m off in my thinking.
Thanks. The plan is to get adjusted to the Humira and slowly back off the MTX and see how things go. I would love to drop the MTX. It has been the root of a few side effects I would love to get rid of.
When I took the MTX this week I was up all night with severe, sharp intestinal pain. I was scared. Maybe I’ll spread out the dosing to see if that has an effect. Other than that I feel much better on the Humira.
Well here’s the thing with my experience of humira or rather one of its biosimiliars and I took it with no mxt or any other DMARD, basically it made me poo lots and lots and lots and lots. It did other things to me too which meant I only stayed on it 8 weeks, so no idea if it was ever going to help my PsA or not.
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Hmmm… Is Enbrel in the same category? Don’t they work on the same target area?
They are both TNFa blockers, but they have a significantly different mechanism - so much so that whilst Humira is often used as a medication for Crohn’s (Inflammatory Bowel Disease), Enbrel can actually trigger Crohn’s on rare occasions. I think whilst you are taking both Humira and MTX, it does make it pretty hard to differentiate, and also it could be something quite unrelated, like a bout of diverticulitis for example. Have you spoken to / left a message at your Rheumy? Or even spoken to your GP to see if a scan and some blood tests to rule other things out is worthwhile?
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Yes they target the same area but enbrel circles the protein whereas humira attaches to it. So they have different mechanisms as @Jen75 said and indeed cause different side effects and can trigger different issues. I was fine on an enbrel biosimilar, it simply just didn’t work for me. I wasn’t fine on a humira biosimilar and couldn’t stay on it long enough to see if it was going to work.
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Thank you @Poo_therapy and @Jen75. I am waiting to hear back from my Rheumy. I was really hoping Humira would work. I have been on so many biologics over the past 10 years and I was hoping one would work longer than a year. Seems I am running out of options. That is a sad prospect.
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What about all the JAK inhibitors? @Amos is on one of those. More and more meds for us are being discovered every day and being approved regularly. Usually first in the USA too.
I had no idea about JAK inhibitors. I feel so unknowable about a topic I deal with everyday. I will read more about them. At least it does give me some hope.
Heard back from Rheumy and I am to stop MTX to see what happens with the Humira alone. Next injection in 4 days.
My rheumy fast tracked me to Rinvoq because he didn’t like that the biologics weren’t effective enough, quick enough. I was one of the first 200 Canadians to be on it before it was actually approved for PsA. I can’t say that I have any side effects, one pill per day. It took 3 months before I really saw improvement likely because it works very slowly at altering things in the body and apart from keeping a PsA diary, I tend to forget how bad things were before on it. After 18 months, it is still making improvements. I wouldn’t say that I am in remission but certainly not in progression. I still have pain and flares when I over do it. But if I am diligent at NOT overdoing things, I can walk without a limp, do basic yard chores, ride a bike, mow the lawn, go hunting with friends on an atv and even cut some firewood. Like everything else, the potential side effects and black box warnings are concerning but having a life and mobility now is worth the risk. It is a very expensive drug but Abbie Care has an excellent compassion division that has just approved me for another year of Rinvoq without cost. (due to a lower income) In your case, I would certainly try it as Rinvoq is proving itself for many autoimmune issues not just PsA. Lastly, my rheumy really likes it cuz apparently your body will not, cannot, build antibodies against it so it should be a long term solution. Hope that helps…ask any questions you like.
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Thank you for letting me know about it. I will bring it up at my next meeting. That is my issue, I keep building up antibodies and the meds just stop working. I can be depressing. I also just want a life where my pain is limited and I am able to be mobile.
I’m sorry @amielynn38, I know how you feel. I too have only the JAK inhibitors left. Currently I am on an Il-1 blocker (Anakinra), it was great for my joints initially (first couple of months) but I’m pretty sure I am getting a lot of tendon and cartilage inflammation now, every morning I wake up I’m so achey around my ribs and it is very hard to get going.
The Anakinra helps my heart, so I’m not sure I’ll be allowed to switch (or want to) unless it fails in that department, so far nobody is interested in the idea of two meds at one time.
Still, at least my heart seems a lot less likely to clap out in the next couple of years, neither me nor my 12yo daughter were ready for that!
Have you got any more lifestyle changes you can make so you spend less energy on things you don’t love, so you’ve got a bit more left for the things you do? I know you’ve been doing this for a lot of time now so have probably done the easy stuff - is it time to look at other things like a sideways step into a career you can work from home or similar?
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Thanks @Jen75
It has been a week without the MTX. I have noticed my skin is not happy. I am hopeful that it calms down some as the Humira takes more control. The IBS issues come and go but at least they aren’t constant. I need to nail down a better diet. Nothing like an inflammatory diet, just eating more balanced meals with more fiber content. Since I have felt so poorly I have been eating more grab and go and that isnt helping anything.
I do agree Jen, is hard when you have tried so many options. You start to fear what may not be possible for your life. I do have hopes that Humira will give me some relief in time. I hope you are able to find a combo that works even if you can’t switch off the Anakinra.
So here’s the deal. I homeschool my 12 year old son plus take him to all of his activities like 4H and homeschool co-op. Placing him in school is not an option. Long story short, he is one of those quirky, highly smart kids that the school systems just can’t handle. We tried Kinder for 6 weeks and the school just gave up. It is a lot of work but I do love it. As far as hobbies I can barely garden anymore. I do what I can but it isn’t as much as my heart would want. So I volunteer once a month to teach kids gardening with 4H. It sort of fills that bucket. We also travel in our RV every 2 months just for a long weekend. It is work but VERY worth it. It gets me out and out of my head. I am able to relax. So to answer your question Jen, no. There isn’t a thing I could side step right now. I wish there was but I can’t. I do have a housekeeper who comes twice a month to clean and my son does a good amount of chores. Life is what is it is right now, but thanks for helping me think outside the box.
It sounds like you have a pretty good balance for what you can handle 
All that would be well beyond me these days! 
I don’t know the system in the US and know it would be very different from here (Aus), though for many kids that need that specialised support because they don’t fit in the boxes, some can get financial assistance to get a support worker that might be able to take over one or two outings a week. I realise that might just not work for you guys, but it is something to consider asking your son, (I ask my daughter her thoughts on everything - she approaches things unconventionally compared to many kids her age, and we always end up with a better solution if I ask her input), as 12 is around that time that many kids start to want that bit more independence / contact out of their immediate family, and if they are ready for it, then it can really help them blossom. Anyway, that’s a very personal thing, I just found giving my daughter a bit more independence around this age worked really well for us both (she has learnt to use the buses and regularly goes shopping with friends for an hour or two now).
At the moment I have a cleaner like you, my daughter helps a lot with the day-to-day chores, and I have a mower guy as I have a lawn and there is no way I can mow it. I even get frozen meals (the best nutritionally I can - there are a number of good ones out there now - and it beats eating a packet of chips for dinner) and meal shakes (though that is partly because I have trouble swallowing many raw foods), and always have high-protein yoghurt in the fridge, and cans of beans and chick peas in the pantry. None of that makes it easy, but it does make it less hard. Humira was good to me for quite a bit of time, I hope it is for you too. Cimzia which is very similar was also excellent for me, might be worth a try if you haven’t yet.
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