Starting Adalimumab.: I am stopping methotrexate and... - NRAS

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Starting Adalimumab.

Jj01994 profile image

I am stopping methotrexate and trying Adalimumab. Wondering if there is anything I should know about it?? Good or bad.

42 Replies

It worked well for me, until it didn't. No side effects that I recall. Can I ask why you are stopping methotrexate? Often doctors recommend methotrexate with an anti TNF to stop it losing efficacy.

Jj01994 profile image
Jj01994 in reply to Frances_UK

I get terrible side effects from methotrexate, so we are hoping that I do not get bad ones from this one. Though if it does not work for me I will end up back on the methotrexate.

Frances_UK profile image
Frances_UK in reply to Jj01994

That's a shame. I've been lucky with methotrexate side effects but I'm only on a low dose. I wish I'd taken it with the adalimumab as it might not have stopped working so soon, but if my methotrexate side effects were bad I would have stopped it too so I understand. Now I'm on an IL-17 biologic which aren't helped by methotrexate. I hope you have good luck with the adalimumab. 🤞

Hi,What is IL-17 biologic is it new? or not used in UK. I have never heard of it. And if it can be used with MTX that is a bonus! Thanks

Not that new. Mine is Cosentyx. It just targets a different part of the immune system I suppose. I don't really understand biologics. I don't know how an anti-TNF can work for a person and then stop, and then for an IL-17 to also work for the same person, but there we have it.

Thanks

bpeal1 profile image
bpeal1 in reply to Jj01994

My daughter had really bad side effects from methotrexate but doesn’t have any problems with adalimumab. She takes leflunomide with it too instead of methotrexate (again with no problems) as our rheumatologist says it will do a similar job to methotrexate. The problem with biologics is that they are proteins which you body can make antibodies against, taking methotrexate along side it hopefully reduces this a bit.

Jj01994 profile image
Jj01994 in reply to bpeal1

I took methotrexate for years (age 12y-current 28y) even though I gave me terrible side effects just because it worked therapeutically for me but unfortunately I am having a lot of issues with my digestive tract and stuff going on involving that, it was recommended by a specialist that maybe I go off of methotrexate to see if that might help so that is why we are trying the biologic, hoping that I will not get so sick with it as I do with methotrexate. Along with the methotrexate I also take Hydroxychloroquine, which I will still be taking along with the Adalimumab.

Hello. I've been taking this for a few months now. Some things are certainly better than they were, so I'm sticking with it for a bit longer. It's worked better than anything else I've tried. I have had issues with recurring cold sores, ear aches and a nasty virus. However, you might not experience any problems at all. I also notice I feel pretty ropey after jab for a few days.

I would say it's worth giving it a go. Good luck with it.

PS...I also use as mono therapy.

Definitely going to give it a go. What do you mean as ropey??

Rough!

That makes a lot more sense.

Been on it since 2006. Works great for me and no side effects. Hope you are as lucky.

Jj01994 profile image
Jj01994 in reply to Potatos

That is good, and hopefully.

It worked for me for 14 months then stopped. I wasn’t taking MTX at the time and my rheumatologist said that I probably built up resistance to the Humira because of that. So I am now on Benepali (Etanercept) alongside MTX injections in the hope that the MTX will not allow the buildup of autoantibodies (I think that’s what it’s called!)

Jj01994 profile image
Jj01994 in reply to Barrister

It is interested to hear that a lot of people are saying that it is used in combination with methotrexate when we are using it to try and get off of methotrexate. My rheumatologist said that there was this one, the humira that I could try and there was one other one I could try if the humira doesn't work, but if the second one doesn't work as well, then it is back to the methotrexate cuz none of the other ones would work, if those two don't work.

Luludean profile image
Luludean in reply to Barrister

Interesting!! I had to stop adilumamub bevause of repeated uti.s. I had no support from my GP.

6 months later ( not having seen rheumatomogy consultant I started Benapali. I injected weekly, horrid joint ozin day after , each time. Taken straight off Benapali ( phone consultation ) no follow up offered???

Jj01994 profile image
Jj01994 in reply to Luludean

That is horrible, I have some issues with my GP but my Rumy has been pretty good, most of the time, about keeping me in the loop. Hopefully you can get some actual help soon.

I’ve been on it a few months now with max dose injectable methotrexate. To date I have found it the most effective treatment I’ve had. Did get bladder infection tho. I do feel ‘m gaining weight rapidly tho and feel “swollen”. Also feel tired after I take it which i find irritating. Was exhausted when I first started it…

Interesting about the weight. I seem to have piled on a few pounds too. Might just be coincidence and walking less due to various bugs.

I swear I’m gaining a pound a day. I feel very frustrated as gaining weight brings a new set of problems.

Agree. It's not good and I totally empathise.

Do you have to inject at a certain time of day or could you change it to fit your schedule?? Like with methotrexate because it gave me such severe symptoms and it made me extremely ill. I would take it right before I went to bed and then sleep through or try to sleep through a bunch of the symptoms rather than taking it in the morning or the afternoon.

Oops…thought i responded but don’t think it went through. I inject it whenever i remember to on my scheduled day. I take it at the same time as my methotrexate. I may play with taking it in the evenings to see if i feel a bit less tired…i’m sorry methotrexate was so difficult for you. My rheumi stated I can only reduce my methotrexate if i go into remission for a good six months after which time she would make micro teductions to the dose. Disappointed to say I have never been in remission in 12 years. She can’t seem to decide if I have seronegative RA or psoriatic arthritis had funny toe nails (thickened, yellow, twisting, lifting from nail bed-not fungal) but no skin psoriasis ever. Interestingly I’ve had significant chronic back pain (two previous surgeries) and now my back feels great since starting adalimumab…

Diagnosed , after multiple mri s and wrong diagnoses with Ankylosis spondilitis and psoriatic arthritis. I have no psoriasis but funny toe nails. No one noticed those? In limbo.

Methotrexate has always been the one that has worked the best for me but my GI specialist recommended that I stop it because I was having such bad symptoms, along with the last couple years I have had some very severe GI issues that were making life pretty hard and the methotrexate didn't help that because it gives me such severe GI and other symptoms. Even with such severe symptoms with the methotrexate, we had always just stuck with it because it worked well for me symptom wise. It was not until now that the GI specialist was like we really need to see about stopping this and trying something else that my doctor and I actually looked at trying something else more seriously. As a kid I was offered biologics to see if it would be better than methotrexate but with the older biologics and some of the possible side effects and other things that could happen taking them my mom and I decided not to try them when I was a kid. I was diagnosed with JIA and psoriasis and a few other things when I was a kid and now it looks like I might also have other autoimmune problems that are GI related as well, with the trouble I have been having the last couple years. I hope they figure things out for you, and that you go into remission soon, and then you can get off the methotrexate, it is not fun medication.

Thank you…same for you…

So interested that you had ‘ bladder infections « on adilamumab . I was told there was no connection !! Constantly on anti biotics , so couldn’t take injections at same time. No support!

Hi I've been on Adalimumab since Aug 2019. I inject into abdomen/side area and sit the injection out for at least 10 mins to room temp. I cut off the cellophane so that it is easier...some people say it can affect sinuses...overall for me it has been excellent- prescribed for skin and joints.

I feel a bit tired the second night after injecting. I'm due a review soon...and some joint problems are back, especially my hands but I'm still really pleased with my skin being clear. Good luck on it.

Jj01994 profile image
Jj01994 in reply to Fuzzy

If you are injecting into your side are you using a prefilled syring instead of an auto injector, or can you use an auto injector in other places than your thigh??

Fuzzy profile image
Fuzzy in reply to Jj01994

The auto-injector...probably closer to abdomen

CagneysMum profile image
CagneysMum in reply to Jj01994

I use auto injection and always inject in tummy … should be 2 inches away from your belly button. Used thighs when first started but found this uncomfortable and it left some scarring.

I carried on taking methotrexate when I started my Adalimumab almost 2 years ago. I’ve reduced my methotrexate but still take both and It’s been a life saver for me … fantastic and no side affects. Almost back to the old me. Good luck on your journey. 👍

That's great! Is it ok to reduce MTX gradually (one 2.5mg at a time) until reaching about 10mg weekly rather than 15mg? I think it may be ok to do one tablet at a time?

Don’t do any changes to your meds without the support of your RA consultant or nurse. You need them on side in case what you’re proposing is detrimental to your health or could possibly cause a short term flare. They can help you manage this, but there’s nothing stopping you from suggesting it to them 👍

Very true, thanks

I’ve been on it for nearly a year. I needed a steroid injection at Christmas but for the past couple of months I haven’t been too bad 🤞🤞🤞. It certainly hasn’t been a wonder drug for me but I don’t get side effects and it’s allowing me to tentatively start my life again…give it time and good luck!

Cant advise but good luck….Biologics have given me my life back

I started adalumimab in November last year and was amazed at the transformation. I have knuckles and can open (most) jars! I inject in my thighs as I find that easier to be steady, but it is momentarily painful. I often get a bruise afterwards (but I do bruise easily) and I have a plaster ready to put on it as it often ozzes a bit of blood too.

I haven't had any side effects (except my cholesterol has gone up slightly) and continue to take a lower dose of azathioprine (instead of methotrexate) with it.

CagneysMum profile image
CagneysMum in reply to oldtimer2

I use to bruise when I injected into my thigh but don’t have the same problem since I started injecting my tummy instead 🤷‍♀️

I was on Adalimumab ( original) from 2005 for 12 years. It worked really well for me but I unfortunately developed pustular psoriasis of my finger nails & after a few years of back & forwards to Rheumy then Dermy they finally got their heads together & decided it was being caused by Adalimumab & not healing due to Methotrexate. They wanted to stop Adalimumab but I pleaded to stay on it. So they stopped Methotrexate instead. It all healed up but without Methotrexate it stopped being effective unfortunately. Such a shame. Good luck with it hope it works for you🤞X

HelloI started this drug by injection in January in addition to methotrexate. All good so far - blood test results show improvement and I've had no side effects. Good luck!

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