I have been using adalimumab for 3 years for my Ankylosing spondylitis and it has been great for my neck and lower back pain. I have now developed some finger pain, wear and tear in my knees and painful toes, as well as plantur fasciitis. My consultant has prescribed methotrexate
Being someone that hates having to take drugs and I’m always scared of side effects I wonder if people in a similar situation could tell me how they have got on with this drug, new to me
Thank you
I also have AS, I have a lot of peripheral symptoms, as well as spinal issues. I have subluxations of several toes, due to AS calcifying ligaments. Both knees are also subluxed due to the patella tendons calcifying. I’ve been on my MTX for 8yrs, mainly on the max dose of 25mgs. I get no side effects, and it reduced my peripheral pain considerably. Your monitored very closely on them, and can stop without tapering if needed. When I have to stop for any reason, I’m anxious to get back on them. You will get many saying they suffered on it, however remember those not having issues, are getting on with life, and not using forums
Thank you for taking the time to reply. It is good to hear positive feedback. I am such a worrier !
I have been on Methotrexate injections for many years with biologics in the past few. Now on Adalimumab with it and don't have any side effects. Good luck
No problems since they put me on the Ipen, nordimet. I'm lactose intolerant so have to be careful with tablets. Good luck.
As others have said, you will be closely monitored, it worked ok for me but elevated my liver enzymes. I needed folic acid too but maybe that is included in the tablets/infusions now. I had some minor side effects ( try not to read the side effect list it is almost comedically alarming!!) but the doc took me off it anyway as it raised my liver enzymes. We are all different, a friend uses only methotrexate for yrs and feels amazing. Try think of what changes happened recently, in your diet/environment/stress as this sounds like a flare if the adalimumab was working so well. I had a bad flare while on it from eating too much protein, you may have food intolerances. I since gave up dairy and red meat and am on no meds but I will get aches back if I run out of my turmeric and black pepper capsules. Omega 3 is very important for me too. But if you have plantar fasciitis ( mine only started being a problem at 40) please know that good insoles from a physio can be life changing, my foot, hip, leg and back pain and limp disappeared in a day, the same happened with a friend. In Ireland they cost me €70 in the physio ( the brand id X-line) but they are far superior to shop-bought versions which did not help. The physio will advise on gentle appropriate exercise to protect where neeeds protecting too....Good luck.
Thank you Lots of ideas to consider here 😃
I'm not quite in your situation but do take adalimumab and methotrexate (I have RA and started the methotrexate first), and know that taking them together can be beneficial. The methotrexate can help to stop the body from developing antibodies to adalimumab which can increase / prolong its effectiveness. A lot of people take methotrexate without any problems. One thing that helps is being prescribed folic acid alongside it, as that can help to reduce the side effects - hopefully your consultant will offer this or you could ask them if not. I really hope the methotrexate helps with your newer symptoms, wishing you all the best.
Thank you. My consultant has prescribed folic acid to take the day after taking methotrexate tablets
I had read some stuff about not being able to drink ( the odd glass of wine) or be in the sunshine as well as all the other possible side effects listed when on methotrexate. Was starting to feel quite miserable about it all
Totally understandable, I felt the same when I was prescribed it!
In truth, the effects of methotrexate vary hugely from person to person and some have no side effects at all. I haven't noticed much difference in my skin's sensitivity to the sun for example - and that's easy enough to manage with suncream and a hat.
I don't drink much personally but do occasionally, and plenty of people on here will say they have a drink at the weekend or on holiday or a glass of wine with their evening meal without any problems. Some just make sure to avoid it on methotrexate day.
It's probably best to check with your consultant / nurse in case there are any particular considerations they think you need to bear in mind, but for the vast majority of people taking methotrexate is nowhere near as restrictive as it sounds when it's first discussed. I wish the medics had more time in appointments to talk through all this with us in a bit more detail to allay some of these concerns.
Hopefully the replies you here will offer you a bit of reassurance. But don't forget that if methotrexate doesn't work well for you or leaves you with unmanageable side effects, it can always be changed - you don't have to be stuck with it.
One of the key things that you can do to help yourself is to try to change your attitude to medication. Don’t fight against it, try to view it as your friend. Your body isn’t functioning correctly without it and with it you can lead a less painful life. Why aim to avoid new medication when it can provide relief from symptoms? I know it’s an entirely personal thing, but I find being positive about my medication makes the whole process of taking it so much better. I’m on both the drugs you mention and feel so glad for them. I am absolutely not meaning drugs that react badly for people and have huge sympathy for everyone on drugs with bad side effects - I’ve been there. But you need to give every drug a fair chance and it helps if you have a positive approach. Good luck.
Thank you. And it really helps to hear from people taking the same meds I have now taken my first tablets so fingers crossed all will be positive x
I’ve been taking 20mg weekly MTX for 7 months so far (in addition to Etanercept biological) and have had no issues other than a hangover like feeling the next day after taking MTX. Since upping the amount of folic acid i’m taking the hangover has subsided.
I have been an RA victim since Xmas 2020. I am diminished in strength and my legs are weak. I have been on MTX and otherwise daily Folic Acid tablets since spring 2021. I have some pains in legs at night and slowly increasing difficulty with walking. I now use a stick. When sitting or driving I feel quite normal, 300 miles will not seem to tire me but walking across the road is a painful chore. I am inclined to believe the MTX works. Therefore any experiment with cessation has limited appeal.
However, I seem so far not to have suffered so much other pain that many RA members complain about. When initially hospitalised in 2020 I was in severe pain.
Knees are problem because of absent cartilage, but nothing can or will be done about that
I have little meaningful contact with any kind of 'team'. I have not seen a specialist for two years and am not aware of any such prospect. My GP requires frequent blood tests, which seem to be to do with MTX but I only ever see him for other medical events. Very brief appointment duration provides no time to discuss incurable RA..
I drink the occasional glass of wine with no evident side effects I am prepared to heed.
Generally I try to live a life as much it was before RA as possible, though it is much diminished. Being very old also has side effects!
Mustn't grumble. Keep taking the tablets.
Will
Abnormal Nrbc and liver platlet results
Newly diagnosed ... A bit down really
Hand Corrective Surgery
Vitamine C and a flare-up?
Hands
