... after an initial boost of having bags more energy and a fog-free brain, I'm deteriorating rapidly it seems.
This is Week 3 completely off MTX (having tapered down to 15mg) despite being formally in remission for a year, like clockwork, the pains are back.
I had wanted to come off as bloods were totally normal including low ESR. I was so fatigued that fulltime work was starting to look impossible. Aged 41 I'm not ready to retire from work, let alone life.
I'm so frustrated and disappointed I can't even put it into words. All my hopefulness that my body could cope without MTX is fading. I feel embarrassed and naive.
Appointment made for 2 days time to start MTX injections to see if they lessen the fatigue at all.
I would love someone to tell me I'm being hasty and this is just a flare and I should hold out a bit longer.... anyone??
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hope-always316
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Unfortunately RA is a life long illness. Did you decide to come off mtx? And did you discuss this with the consultant or rheumy nurse? Sadly this is what happens. I have been in remission for about five years, having started 8yrs ago on mtx, sulphasalazine, naproxen and hydro chloroquine. These were gradually reduced to just mtx 15mg and sulpha. Then over last three months I had two major flares. So in consultation with nurse and dr they upped my mtx to 20 and back on the quinine. And it’s so far so good. So apologies to be harsh but RA ain’t going to go away😏. See what the rheumy team say and take their advice.
Good luck.
There's no reason for you to feel embarrassed. It is your life and your body and you have to try what is right for you. Who in their right mind would want to take a toxic drug if they did not have to? Go with your gut feeling and there is no shame if you feel you have to try methotrexate again. Doctors also make mistakes and it is your body at the end of the day. We all have enough to deal with without beating ourselves up. Take Care
I have stopped Leflunomide after being on it for over two years. I started getting night sweats and fatigue which got worse and worse. Stopped the drug over three weeks ago and am feeling better already. Will probably have to go back but as my joints are not too bad just now want to give my body a break for a while. Same thing happened with methotrexate.
I think it's natural that there comes a point where you want to try drug reduction. I did similar after 2 years in remission, although just started to drop doses rather than stop altogether. It didn't work for me either and I went back to same drug regime as previously.. So don't give yourself a hard time over it. But personally I would restart the drugs as the more active the RA gets the harder it will be to get under control again.
Have you talked to your rheumy about the fatigue? As I found that getting my vit D levels up and increasing the folic acid helped quite a bit.
Absolutely don’t feel a fool. No one could blame you at all for wanting to try to come off the Mxt. It seems when you feel pretty pain free most of the time you think you must be in a natural state of remission but sadly it’s rarely the case. Tried to reduce it myself with the same result.
I hope the injections are better and maybe you can manage the fatigue with extra folic acid if it’s still making things hard.
Unfortunately You have to accept no two people react the same to any cocktail of drugs. Did you just stop Mtx because you thought normal blood tests mean that was it? Were you taking the FA six times aweek? I found that was the key to beating fatigue. Did your rheumatologist support that decision?
Unfortunately a high percentage of people with RA need to be on medication for life....but so what? If you don't hurt why not take a couple of pills or an injection & lead a 99% normal life, rather than stopping your meds and getting a flare?
Yes I asked if I could stop (after reducing from 20mg successfully down to 15mg over 3 months). I've been on MTX for 14 months. RA was never my rheumy's firm diagnosis which is why I was eager and curious to know if I was in a 'natural' remission. This inflammatory, reactive, arthritis which circulates round various joints started with a 24hour bout of food poisoning from chicken in May 2016. I've never been diagnosed with Rheumatoid Arthritis although it's looking likely.
Now I'm facing life with pain and toxic medications. I had to see if the reactive arthritis had ceased naturally and I got my answer
I felt so good off MTX for the past couple of weeks but right now, I can't lift a kettle without my wrists hurting, cant bend my very swollen index finger, or kneel because my right knee is suddenly puffed up like a hard balloon....??!
I've been on 5mg of Folic Acid 6 days a week for 12 months.
My rheumy did support me coming off it, we discussed it fully. She also said I can try the injection but I'm not sure that will do anything to stop the chronic fatigue.
For the first time since this nightmare began, I feel really very pessimistic which is not at all like me. I was told this would likely resolve within 12 months. The disappointment is overwhelming.
I was once told by a rheumatologist if the fatigue ever go and their answer was that it’s a million dollar question and couldn’t say whether it will go.
I do agree with helixhelix , when we are in remission for a while, we tend to see if we can off mtx, it is very normal.
During my last RA appointment in 4th Sept, I told my rheumy that I vomited right away when I took mtx every time. Then she said that she wanted to keep me for another 6 months before she reduced the mtx to the minimum dosage, that would be 7.5 mg per week. Since I continued to vomit, she said that she could try to reduce it immediately from 10 to 7.5 mg but she highlighted that I would be subjected to the risk of having flare, she wanted me to take note of that and just walk in to see her if there is any flare. Also, since I have been on mtx for 3 years, the flare might not start immediately if any.
You do know that when you take mtx, your RA will be under control, therefore I suggest you see your rheumy and be strong to soldier on and you know you will be fine again. Nothing to be ashamed about, we just have to accept our condition and live on with high spirit to fight back. No doubt it is painful and we would be miserable for a while, but that would be only for a short period as compare to the many more years of our life.
Seriously, I would choose to live on the normal life with some bills than to suffer the pain and immobility in life.
I tried doing the same, hadn't been in full remission but I was unsure that MTX was actually helping and was fed up of the side effects. Similar issue by week 3 I deteriorated considerably, had few more weeks off it due to trying alternatives and ended back on it. For me it was lesson learned, whilst it isn't perfect for me it definitely does contribute to dampening symptoms. We're all different though so discuss your next step with Rheumatologist, maybe you'd manage ok on a lower maintenance dose once this flare is sorted? Good luck x
I too have reduced my dose of mtx from 20 to 12.5 mg as that seems to be the highest dose I can be on without (IMHO) suffering unacceptable side effects- bowel problems and nausea. Have discussed this with consultant and have promised her that if my joints flare up significantly I will contact the nurse to begin mtx injections. Have also halved my hydroxychloroquine to 200mg a day with her knowledge.
I do think we all like to feel in control of our own illness - and medication - but there are undoubtedly difficult choices to be made. I did ask my rheumy to confirm that my joints were only being damaged when they were swollen and am monitoring them very carefully.
Hi Hope- always, firstly I’m really sorry you’re in this position and understand something of your disappointment. I too came off Mtx 3 weeks ago and felt much better for having done so. I went back onto azathioprine (to keep Crohn’s in remission) and hoped it would have some impact upon controlling my joint inflammation too. The last few days I’ve begun to have far more joint pain and embarrassingly ended up in tears in my fitness class this morning as I was unable to do some of the exercises 🙁 I think that the underlying reality is that a part of me still holds myself responsible for my health- as if I ought to be able to do without medication if only I tried hard enough. In psychology we call this omnipotence - it’s actually what lies behind our ability to strive and be independent in life - but isn’t very helpful when it comes to accepting things beyond our control. For this we need to cultivate acceptance - which goes against the grain for many of us and when it’s for something that makes you feel awful is no mean feat. I’ll be self soothing and meditating away the rest of the week! I wish you the best of luck and hope there’s something in this position that might help you in some way. E x
This was extremely helpful to me, thank you. I do struggle with accepting this is happening and wanting to find the magic / secret cure. It's very frustrating. I know there's a lot I can do to help myself through diet/exercise so I'm going to focus on what IS in my control and try to learn and accept that medicine is there to support what we CANT control.
I hope you'll be back enjoying your class very soon x
I remember my rheumy telling me that accepting the diagnosis and the drugs is the first step to getting better.
I battled for a long time with accepting that i had this horrid illness and that drugs would factor in my life for the foreseeable.
But actually she was right, once i found some sort of peace with the whole thing i did begin to improve.
I dont want to appear patronising- i am 5 years down the line and hate the fact that i rely on these toxic drugs swimming around in my body, but they give me the quality of life that means i can do anything i want to- and that is better than the alternative!!
🔔 Can I Avoid RA Drugs or Should I Go On Drugs? 'Paddison Program' FAQ Opinion; Also: Methotrexate Explanation & References: healthunlocked.com/nras/pos...
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My understanding is it's not wise to even begin contemplating reducing meds 💉 💊 until:
• Our inflammatory 🔥 markers are down ⬇️ significantly over a sustained period of time (months on end 🗓 🗓 🗓 . . . ) as well as other indicators.
• Looking at the 'big picture' 🖼 (a multitude of factors), our rheum. 👩⚕️👨⚕️ assess it's now 'safe' to attempt a reduction — only under their guidance 👩⚕️👨⚕️ & continual monitoring 📈📉 .
• And, the reduction is only advised/ allowed in tiny/ small increments 📶 over an extended period of time months 🗓 🗓 🗓 . . . / year(?) — all the while under our rheum's 👩⚕️👨⚕️ watchful eye 👁
• And, of course, we are CONTINUALLY IMPLEMENTING TECHNIQUES to keep inflammation down & disease progression 'at bay'.
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It's a continual, life-long 'ebb & flow 〰〰 process' —
NOT 🚫 an 'off 🌚/ on 🌝 switch'.
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Bears repeating: A continual, life-long 'ebb & flow 〰〰 process' — NOT an 'off / on switch'.
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[Merely my layman's understanding of med-reduction process. 😌 🙏 ]
Wishing you the very best, hope-always316. 🙏 🌺 🍀 🌞
Thankyou. Yes my coming off MTX was supported by my consultant t as my DAS was very low and all bloods normal with no other meds (not even painkillers) and a successful reduction in MTX to 15mg over time. I guess in relative terms it's early days and I'll need to accept some error with the trials
👉 In context, what's considered "within normal range" may not be considered 'good enough' for beginning reduction (in some rheums. 👩⚕️ 👨⚕️ eyes). 😳 🤔
👉 Dipping below 'normal/ standard/ typical range' range may be required. 🤔
👉 As well as reducing in even smaller increments — over a longer period of time — before attempting to wean off totally. 🤔
👉 As well has having a long-term 'maintenance' process/ strategy in place. 🤔
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Yes, yes, early days'n all. 😌 🙏
Perhaps putting it 'in context' (in framework) as a 'trial run' — an 'experiential learning process' that'll serve you well down road. 🤔 👍
Yes, yes, accepting (patiently, gently) glitches & hiccups during trial 'n error runs as being 'normal/ typical' is sensible approach/ attitude. 😌 🙏
[No need for any blame 😧 , shame 😔 , or 'whatever' 🙃 😬 🤡 .]
It's merely part 'n parcel of the typical/ normal experiential (experimental) self-learning 🤓 process that you go through hand in hand 🤝 with your rheum. 👩⚕️ .
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🤓 🤝 👩⚕️
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You both figure it out 'as you go'.
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As long as you continue'trying' to help yourself, 'trying' to figure out what works for you, 'trying' to 'connect the dots' for your situation, you're in good stead, hope-always316. 😌 🙏
If you're ever interested in attempting a 'safe' reduction process in future — provided your body has achieved a sustained state of improvement/ healing & your rheum. believes it's safe/ appropriate for you to reduce meds at that time — Julia's 👩 experience may come in handy: Julia has come off Methotrexate in a controlled manner: paddisonprogram.com/julia-h...
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There's also a couple other gals (👩 Lor & 👩 Debbie) who may interest you over at seneca's post: Mtx: when is "brain fog" serious: healthunlocked.com/nras/pos...
I think many of us who've needed to temporarily stop MTX for antibiotics & the like can relate to this. My limit is 3 weeks before the old troubles kick in again & I'm so pleased to be able to restart it again.
You say your inflammation levels are low, so are mine, around 2 to 6 ESR & 2-3 CRP but only because I'm on MTX, if I came off it those would soar within weeks. So from that I can't say I'm in clinical remission but low/moderate disease activity depending on my DAS 28 score. To be honest I'd no longer stop it than any other of my meds unless there was a medical need.
Maybe you could discuss dropping down a dose, see if it keeps you controlled enough & that may just help your fogginess? Or, have injections been discussed? It's often the case that a lower dose can be maintained than the dose you were on with tablets. This is because there's greater bioavailability when injecting as the MTX goes straight into the bloodstream, it doesn't go through the digestive system like tablets do.
I'm sorry but I don't think it's likely it's just a flare, or rather it is but you've caused the flare because by withdrawing the MTX you're not treating the disease. Don't feel embarrassed nor naive, think of it as a lesson hard learnt, you have a chronic disease like the rest of us unfortunately. 😔
Almost immediately, certainly by the following week. It's not like starting it the first time where you notice subtle improvements & by around 12 weeks you know if it works or not. So that's something to hang on to, the flare should ease quickly!
I was off Methotrexate for 2 and half weeks and my RA came back full on in the whole body. Now back on it and hoping the pains will subside eventually. This is a lifetime medication it seems.
1. Agreed to a systemic steroid shot to get flare symptoms to back down a bit.
2. Back onto MTX (15mg) still orally as no gastro issues so they think it was underlying disease activity causing fatigue, not simply MTX which makes sense as it was increasing (fatigue).
3. Adding in Sulphasalazine slowly...
4. If knee remains puffed up in next few days I've to get it drained and a steroid injected
5. Occupational Therapy review for advice to keep me working
All-in-all, lots of support which I'm grateful for but can't help feeling really down that I've gone backwards.
I'm not sure what Sulphasalazine will add to the mix but off to read up on it. If anyone is recently on both MTX and Sulphasalazine... is it working better than MTX alone?
No, you've not gone backwards, you're moving forwards again, forwards to becoming controlled after misunderstanding/it not being explained well enough that you can't manage without meds. It's not all bad, think of the relief you'll have. All of us with this disease have had to come to terms with the likelihood we're to take meds the rest of our lives, you'll get there, now you know what happens when you don't. I hope the streroid injection brings things to a better level soon & all goes swimmingly from now on.
Double therapy should work better with any combination as it's being introduced to bring better control. I was on it with MTX but unfortunately I responded negatively to it, no reason you should any more than the next person. x
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