I started on yuflma - alumAdalimumab 10 weeks ago (5 injections) I thought it had finally worked after 4 injections. But In my elation for feeling the most well I have in years, I managed to forget that the nurse had upped my steroids. When they were reduced again and starting wearing off, I crashed. Not the worst flare I’ve had, but it’s getting steadily worse as the week is progressing.
I’ve spoken to the rheumatologist nurse today who’s putting the steroids back up again to get me through the next month until my appointment with her. But she said it’s best if I go back on to methotrexate as well and I need to think carefully about it as it’s my best option to make this work. The problem is methotrexate wasn’t working very well for me and I became very ill and wound up in hospital for a week because my heart was in a state. (But I can feel my heart having a few issues again today) Now I don’t know if that was a reaction to the methotrexate or such bad inflammation that I got poorly. But I’m really worried now. But I did not feel well at all the year I was on it and hated the side effects. I’m convinced it caused depression- but they tell me I’m mad and it wasn’t possible. I don’t know what to do! The biologics aren’t working well enough- i am pacing in that I’m only active 12 hours and am resting or in bed 12 hours a day and I’m not at work until I start a new job in 10 days. They told me this is stress induced- but I’m excited to start and my life is no where near as stressful as the last 5 years. I’m anxious because I don’t feel at all well not the other way around. Living like this isn’t feasible given my situation- but I’m not sure I can put myself through the hell of methotrexate again and run the risk of loosing another job because I’m so ill. I really don’t know what to do….
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Tealblue2
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Poor you. Due to start a new job and flaring and hating the thought of going back onto MTX………..I can wholly sympathise (tho it hasn’t been my situation in years having been on many drugs since) as I was once in the same situation.
The best thing is to request an appointment to discuss your current drugs and whether you can bypass methotrexate as it’s made you ill in the past. It suits some but when it doesn’t it can make life hell with low mood, sickness, brain fog and general misery for a good few days after administration. I felt absolutely lousy on it and after four years refused to take it and at least got my brain function back if not my body!
You don’t have to accept any drug if you’re not happy with it. MTX has been the cheap, go-to for donkeys years and it’s very effective for some but if you can’t tolerate it there’s many more combinations and mono-therapies to be tried so do go and discuss the options.
Ten weeks on your current medication isn't really long enough to measure whether it’s working well yet without the steroids and I can see why MTX would be considered to boost it but it’s your body and if your body detests the thought of it (which can make you flare) then it’s not for you. Best of luck and hope you can find a combination that suits you very soon.
I completely agree with this person's thoughts. I would add though that you need to be aware of being caught by steroids. I've been trying to get off them or at least reducing them for years and can't because nothing works for me as well as the steroids and I'm annoyed at myself for not being able to cope with out them.Inflammation is also a big factor in low mood and depression.
You need a face to face with your rheumy and you tell him/her everything you have said to us. It’s your body. Your choice. There are loads of other drugs available. Can you afford to go privately? It’s about £200 to see a consultant privately, then they simply action everything on the NHS. Be strong, say no. Make him/her aware of everything that is going on. Keep us updated. Xx
Sorry to hear you're having such a difficult time finding an effective treatment combination, it is so hard when it's so disruptive to work and daily life.
It is good at least that your rheumatology team is being responsive to your symptoms and prescribing steroids as a bridging treatment, to allow enough time for the adalimumab to show therapeutic effects if it's going to. It's frustrating and difficult but 10 weeks probably isn't quite enough to assess it fully. Really hope that the increase in steroids will be enough to allow you to start your new position as planned. I totally understand the challenges that RA / treatment can create for work life and have had somewhat similar experiences. Hugely sympathetic to your situation.
If methotrexate isn't an option due to the unmanageable side effects, are there any other conventional DMARDs that could be tried? As well as potentially having an additive therapeutic effect, they can help to prevent the body from developing antibodies to the biologic so that it works better and for longer. I think sulfasalazine and leflunomide can potentially be used in the same way, so maybe they'd be worth discussing if that isn't something that's already been considered?
Wishing you all the very best with this, and good luck in your new job.
Oh, it sounds like the sulfasalazine's definitely not doing enough for you then. I'm quite surprised that you're being encouraged so strongly to look at re-starting methotrexate when it made you feel so awful and may have contributed to cardiac issues requiring hospitalisation, though. If you know it's really not right for you, you can decline it and ask for alternatives to be considered - it's your body and life! Hopefully the increase in steroids will give you some relief from your symptoms while you're waiting for your nurse appointment. We're encouraged to give biologics six months where I am because they can take so long to show effects. But I really hope the adalimumab kicks in for you very soon so that you don't need to take longer-term steroids. It's such a complicated juggling act isn't it.
Ten weeks isn’t really long enough to judge if your latest drug is going to work….& tbh I think we all got a bit depressed ….ie Fed Up….waiting for the first light at the end of the tunnel.
But if you are having cardiac symptoms that you think were caused by the Methotrexate I’d have a word with your GP. Although GPs on the whole don’t have a vast knowledge of DMards….they are usually pretty clued up on hearts & will have seen your hospital discharge notes ..& will be able to advise you & can discuss your present situation with your rheumatologist.
So try to keep calm…most of us got impatient waiting to find our chosen medication. …but most of us get there in the end.
I think you need proper professional help as stress could cause the heart it appears issues, like palpitations or over breathing causes a sensation like panic. I don't know why they stopped the MTX because biologics usually need a DMARD with them and there are a lot of those. I'd urge you to get back in touch as steroids can also cause palpitations and all sorts of weird sensations. I know as they did me and it was hard as my reason for taking them was not RA so just had to be endured but it really wasn't good. It's a common fallacy they give more energy as long term they don't. Try not to listen to your heart even that alone will make things worse but try distraction and also try to get up as lying in bed waiting for isssues tends to make them happen. Please understand I'm not saying or implying you're making things up just offering a different point of view. Steriods might seem great but do have side effects and they can be extremely serious. You could try to see if your GP has any ideas but generally it takes between 12-14 weeks for a medication to work so it might just be a bit more time. I'm really shocked if I'm reading this right that your being told despite being hospitalised with heart issues to take them again unless nothing wrong was found but still you still need some professional advice
Thank you. I know it’s not stress related. I’m very happy in life, apart fro feeling ill. I am trying to pace, whilst not over exerting as a single mum. The balance between get moving and doing and rest and don’t over do is so fragile. But I can assure you I don’t sit around feeling sorry for myself. You only get one life and having worked so hard to get myself and my daughter safe all I want to do now is enjoy it to the max.
My heart rate drops regularly. That’s part of the reason I was admitted to hospital. But it only happens when the day is flaring. It’s scary. But I try to carry on. Because life is just too short.
I’m starting a new job because I was encouraged out of my last one after being so ill 3 months ago. But I have to work. For my sanity and to keep a roof over our heads.
But gps, consultants etc are just not listening to me. I just want my life back and one I can enjoy gently
Then if you’ve been in hospital didn’t you get a diagnosis or help to control your heart issues, because what you’re describing is serious and a nurse has advised you to carry on with steroids. it’s not about feeling sorry for yourself at all but trying not to overthink things. Is your nurse aware of your heart problems ? If so please get more advice. Stress can be caused by steroid's becuase they can speed things up. I used to shake, feel unbalanced, fatigued, very upset and ill. All are well known side effects both on the drug and coming off it. You surely have been seen by a cardiologist because the dose which might make you feel better and reduce fatigue isn’t that different from the dose that does exactly the opposite. Being a single parent isn’t easy but even so being unable to function well makes it worse. You have my sympathy but it’s good to read you’re still so positive. Try to see a professional and even try some yoga perhaps. It might make no difference but could be worth a try and stress can be beyond our control as even the most positive person has things which worry them.
Hi, I can't advise but just posting to offer sympathy. I have just tapered off steroids and my symptoms have returned too. On Mtx but it hasn't started working yet. I know of another person who was depressed on Mtx along with other things, so your rheumatologist should take this seriously. But as someone else said, there are other drugs to try maybe? And yes, get a second opinion if you can. Good luck with the job and try not to worry - easier said than done, though!
Where you on more folic acid than methotrexate? As that really helps effects , also some rheumatology give a minimum of 3 months to see how things works on meds
Rather than seeing the nurse I would contact your rheumatologist’s secretary and ask if you can have a face to face appointment with the rheumatologist instead. Just explain what you’ve told us and ask for a medication review. I can’t tolerate methotrexate but my rheumatologist lets me take leflunomide with my biologic.
Methotrexate does certainly cause depression. It's a listed side effect! I personally experienced awful mood issues whilst on it. Don't be bullied into taking something if you feel it's making you ill.
I agree with others re seeing your rheumatologist, as opposed to the nurse at your next review. I personally try to encourage people to use other meds, rather than steroids, when there are other options. I developed severe adrenal insufficiency due to steroids, causing atrophy of my adrenals. I produce no cortisol, and aas only diagnosed with AI when I had a severe stroke due to undetectable cortisol, when it should have been over 500. I wouldn’t wish AI on anyone, you have to think ahead and dose accordingly, and carry an emergency intramuscular injection for when your vomiting, or injured.
I’m also surprised that despite being hospitalised with heart issues due to taking MTX, that they are advising you to try again. Good stress as well as bad stress affects us, I have an app I use, which tells you how your body is coping, often I feel relaxed, yet it picks up stress, so we’re not always tuned into it. With a new job looming, most people would be feeling stressed, even if in a good way and looking forward to the new challenges.
I hope your team listen to you, and wish you all the best in your new job.
Ask I being naive/ stupid? But a thought I’ve just had… all life comes with some stresses and strain. It’s inevitable. But is it right to try and find a drug regime that will protect this as best as possible and give you the best chance? Because at the moment I feel that what I have been given isn’t enough to make me feel well on the best of days, let alone any bumps in the road? Or am I hoping for too much?
I think a lot of advice on here is saying go back to your professional team, as you’re heart problems do complicate things and we are not allowed to give medical advice but only from our own experience. You’re seeking an answer that isn’t unreasonable just one that is complicated. It may be just coming off the steroid’s cause symptoms and it’s a bit too early to know if the biologic is working. You really are not unreasonable but heart issues must be taken seriously. A lot of meds might be eliminated because they can affect the heart and steroids definately cause a lot of side effects. So please talk to a medical professional. Runrig01 has helped and her advice is good you really to get some clarification on why your being advised to up steriods if you’ve got heart issues. Don’t risk making things worse, but you could talk to your cardiologist too.
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