I stopped taking methotrexate back in December, so I thought I’d report back on how things have been since then. First of all, I noticed the difference in my energy, mood and anxiety almost immediately after stopping. The rheumatology nurse said it would take two weeks to completely be out of my system, but I started to feel more ‘me’ before that. It was a real relief to get some energy back, and lose some of the dark moods and anxiety that had plagued me for about four months. I hadn’t really expressed to many people the severity of the anxiety that I’d been living with whilst on the methotrexate. The fearful thoughts weren’t taking over and thanks to my mindfulness training, I was able to basically live with them without believing them, but it was hard work, constantly living with a level of mental anxiety that just is not me.
Having the energy to enjoy life – especially around Christmas – meant that I was certain coming off methotrexate was the right decision, even though I did have a few painful flares around the Christmas period. And then, amazingly, I had over a month of being free of flares, fatigue and pain. Towards the end of my time taking methotrexate, I’d been overdoing the sugar, and also cheese – two food groups that I can very easily overeat. So in the New Year, I decided to massively cut down on sugar, and to totally give up dairy. At the same time, I went days without pain, flares or fatigue.
The longer I went without a flare, the more I wondered whether cutting out cheese was a factor. After the first week or so, I thought that it could just be a co-incidence. After two weeks, I was a little hopeful, though I still conceded that it could be a coincidence. After three weeks, I marvelled that this was the longest pain-free period in at least 3 1/2 years. After a month, I wondered if I’d finally cracked it – perhaps dairy is one of my PR triggers and if I just stayed off it, I’d be ‘normal’ again?
Five weeks of no pain is enough to let the hope really slide in. The hope that you’ve maybe entered remission. The hope that perhaps you can live a normal life again. The hope that you’ve found your trigger and that if you just avoided that trigger, you’d be free of flares. That wasn’t to last. Last week I had one night of pain and stiffness that reminded me that with PR, it’s never as straightforward as you’d like it to be. Then yesterday, I had night flares and woke not being able to move the fingers in my left hand, and a sharp and persistent pain in my right wrist.
The pain wasn’t as bad as the disappointment. I managed not to give in to a spiral of thoughts saying things like “you should have known it wouldn’t be as easy as that” and “serve you right for getting hopeful”, but they were there nonetheless. So I had a bit of a cry, and reminded myself that I’d had a long period without pain and that, in and of itself was still worth celebrating. And so I got up, massaged my hands and dragged myself to yoga, which I know helps both mind and body, even though I had to spend a lot of the class in child’s pose resting and feeling sad.
Today I’m pain free again. I’m still going to stay off cheese for another month or so. Just to see. And I’ve been keeping a food diary since the new year, so perhaps that might shed some more light on things in a couple of months when it’s had time to build up some decent data.
In the meantime, the most recent flare has reminded me (once again!) that hopes about a pain free future are all very well, but living a day at a time is the only way to live with PR, because you just never know what’s around the corner. And five weeks without pain, really IS still something worth celebrating. I won’t totally let go of the hope that one day that might extend to longer, but I’m not going to cling onto it either. I’ve lived with this for long enough to know that spending all my energy just putting hopes or fears into a future that may never happen just stops you from really living here and now. And here and now really is all there is.
My Palindromic Life 
I chose to stop taking methotrexate last May, felt myself again after a few weeks, after feeling I wouldn’t make it to Christmas! Rheumy said I would crash and burn, I said see you when I do, one small flare in my right ankle this last month but just normal aches and pains the rest of the time…. might be psychological but it has worked for me so far.
I came off mtx to a while back…For me it didn’t seem to do much except make me so very sick. I still had flares right the way through, I still have more joint damage so the only difference for me has been less sickness 😉
I really don’t miss the side effects…The tiredness for 2 or so days every week after injection it. I take good pain relief and thats really all that actually I would fight to keep. The being able to keep moving I am sure does far more good than the mtx ever did but for me it made me so sick I just wanted off it. Lol Would I have made the same choice had I known I was not going to be viewed as viable for anything else? ….. You know with 4 anti emetics that still didn’t stop the sickness I think I would have
Keep going as flares come and go but the quality of life is what we all need daily xx
Sounds like you have made a good decision. I couldn’t cope with being on methotrexate and came off it for similar reasons to yourself. I am convinced that many of us can adequately manage our conditions by paying careful attention to nutrition and supplements as well as sensible exercise. I just wish that the health industry took more interest in such basics but then they do not command the huge amounts of money that big pharma thrives on.
This sounds like me, but it’s not a “dairy” allergy in general but a specific allergy to a dairy protein called “casein.” Why is it relevant to define? Because it is in everything. Serious. Non dairy products (ND creamer is pure casein), house paints, even rubber and latex gloves. I found it out the hard way after wearing a rubber glove for five minutes: my hand started to inflame and the rest of my body followed suit soon after.
It’s worth looking into if you’ve noticed a difference with cheese.
I have been diagnosed with PR. My initial diagnosis from a different doctor was RA. However, my new rheumatologist says it’s not RA. He took me off of hydroxichloroquine and my other med and put me on prescription strength Tumeric. This was a month ago. I am still having flare ups in different places (wrists, fingers, shoulders, hips and knees) I call it traveling joint pain! A trigger for me is lifting something over a pound, typing all day with few breaks (I’m a legal assistant) or standing for long periods of time. I cut my hours at work to 24 a week. This week I started with left middle finger, then next day on to right pointer finger, then next day to left wrist and pinkie finger. Yesterday it began in my left shoulder. This is so frustrating! A lot of my Saturdays I am so fatigued I don’t even get dressed I just stay in my recliner and try to get lost in a movie. I have a 3 year old grandchild and I am in too much pain and fatigued some days to enjoy her!!!
I saw your post on Cloudy, I was wondering how you came to accept your PR? I have recently been diagnosed with PR after being in pain for over a year, although I’m happy to be diagnosed quicker than most, I’m still struggling. I practice mindfulness but it has barely prepared me for such an unknown diagnosis. I feel like I cannot get the support that someone with RA can get because of the little research done on it. How did you overcome this?
Hi Megan,
Thanks for your comment. Acceptance is one of the hardest things, and it took me quite a while. Even now, i go from being in a space of acceptance, to resisting, and then have to work on accepting once more. I found a mindfulness course was what really enabled me to get into that place – and can recommended the book Mindfulness for health, which was based around the course. What mindfulness teaches is that there’s our pain/suffering – our PR, or RA or whatever. Then there’s our reaction to it. This is often resistance, and what this creates is MORE pain – rather than less. So, while it’s not easy, learning to accept actually reduces the amount of suffering we’re experiencing. You said that you practice mindfulness already, so perhaps this concept isn’t new to you. Other than that, I guess I’d say that it’s also okay to struggle! It’s not an easy thing to come to terms with, and it will take time to sink in and get used to the ‘unknown’. I’m 12 years in with PR and it is still very much an unknown. I don’t know from day to day how well or ill i’ll feel, or what I can or can’t do. It’s much easier for me to let go of the need to KNOW and just be with things day by day.
Hope that helps a little.
good luck.
Hi just read your story and can relate as I have the same condition. I searched for almost 2 years until I found my trigger. It was a lack of vitamin D. As soon as I started taking 6 capsules a day my attacks stopped and I came of the medication. Have been in remission for six years now. Not sure how long this will last.
Patrick
I’m in the early stages of being “semi-diagnosed” with PR. I say that because my new Rheumatologist said he wasn’t 100% sure. In 2007 I was diagnosed with Fibromyalgia, in 2010 with Seronegative RA. From 2010-2018 I actually had very few flares. But 6 months ago, that all changed. My hand was swollen, then a finger on my right hand. Then my ring finger, then my left elbow, etc. it was almost like I could feel it raging through my body. By the time I went to the doctor 2 days later, there were absolutely no signs whatsoever. I felt like an idiot. I have a follow up appointment in 2 weeks. Im off all meds until the new doctor can decide on a dx. He put me on prednisone for 10days. Today, I’ve started all over. In my pinky, third finger on both hands and my knee. I’m truly baffled and a little bit scared.
I found your article and blog in Jan 2022. I just got diagnosed last night with PR. For almost a year, I have these flares that only people I see daily at work understand what I have been through this past year. Seen many by many doctors and specialists and unable to get the diagnoses because only osteoarthritis is showing up on my xrays, and blood test all negative for RA. Thank you for sharing your journey and your frustrations. Now I know that I am not crazy.