I posted previously about side effects that was experiencing. I was on Sulphazalasine and MTX (Metaject) and was experiencing nausea and acid indigestion along with a sore throat and a rash on my head. I stopped taking the sulpha and the nausea and acid indigestion went but the other symptoms didn't so I called the nurse to discuss. She suggested that I go off MTX for 3 weeks and then back on it (if the symptoms go and come back, then it's side effects). I've had 2.5 weeks off now and missing the first dose was such a relief. The itchy scalp and sore throat reduced and I felt systemically so much better. Then the RA started to kick in and I'm feeling worse with general ill feeling and joint stiffening up again. I'm so conflicted. I guess I'll have to go back on MTX to prove that the symptoms were cause by that but that first week of being off it made me feel so much better that I long to achieve that feeling while having my RA kept in check. I know I'll need to discuss with the nurse but I can just see that if they are willing to review my meds it's going to be a slow progress and will get worse before it gets better. Is that a fair assumption?
Off meds for a little while: I posted previously about... - NRAS
Off meds for a little while
I get a lot of itchiness have you taken say anti histamine to see if this helps? I take it every other day and also helps with my intolerance to a lot of meds as well
Have to admit I didn't take anti-histamine. Fatigue was so bad that I didn't want to risk adding to it.
I find it was the only way to keep things semi sane so my Gp put me on fexofenadine and on bad days can go up to 2 but usually one a day keeps a lot contained!
I had a very similar experience from sulfasalazine for me it was the drug from hell. I spent three months with my head down the loo every night,so my rheumy ditched it forever.
But when I went back on the Mtx , it was night and day, and I stayed on that very successfully for seven years ….so let’s hope you might be as lucky!
That gives me hope AgedCrone because the MTX certainly seems to have been working judging by the return of symptoms now!
No two of us react in the same way to any drug….but…. & I am not preaching here….really bite the bullet….dig deep, & if you fail you know you have given it your all.
I do realise that when diagnosed I had just retired & didn’t have to push myself to go to work..but when you think about it, that could be what seems the easy way .
But reading on here a lot will agree with me…if you give whatever you think is failing you…just that little bit longer….you often hit gold!
Go for it 100%!
I have absolutely no doubt that MTX is working. I had been on it for a year. I'm just not sure that the side effects are worth it. At the same time, is it worth pursuing an alternative that may mean that I'm spending the next year in pain and with the risk of other side effects while I'm chasing the elusive perfect drug when MTX is at least treating the RA. The week that I was off MTX before the RA symptoms started to reappear was perfect and makes me realise what it could be like to be on a drug that works with no side effects.
Have you had your. DAS ( Didease Activity ) done recently ? If you test over a certain scale you would be eligible to try another type of treatment ….that is why when I changed from Mtx I was prescribed a Biologic .
Do hope you have some success soon.
There was a thought to move to Biologic but my hand ultrasound showed no activity (not that I ever had it in my hands) and the MTX was working well. At that time the side effects seemed minimal and I was happy with that decision but since then (a couple of months) the side effects have become more debilitating with me being useless for a couple of days after taking the meds and finally getting through them by the time the next dose is due. I have a sedentary job working from home and so can work but it's anything I try to do around the house completely wipes me out and I just have to go take a nap (not great when you have both a family and elderly parents to care for). When, with advice from the nurse, I stopped the MTX I felt great until the symptoms of RA came back.
You could always ask your rheumy nurse to either arrange a DAS examination, or refer you to your rheumatologist to get it done. I don’t think hands were included & I know feet were not when I had my test about 7 yrs ago….but maybe with the present difficulties with seeing a rheumatologist…things have changed ?
But if you don’t ask you will never know! So put on your best Pretty Please voice & ask to get it done.
It really is very difficult when other people rely on you when you are feeling so rotten,…so onwards & hopefully upwards!
In a similar situation I was advised to drop each med at a time so we could determine which one was not working - Adalimumab went first and I didn't feel any effects neg or pos, sulpha went next and I did feel better after stopping including the brain fog cleared. After dropping MTX for 2 weeks felt absolutely awful - flares etc so back on it - still have very itchy scalp and other things but now back to square one reviewing meds that might help. Had ultrasound yesterday on hands, wrists, feet and ankles so hopefully will get to talk to rheumatologist soon
There was definitely improvement on dropping Sulpha and I didn't get a flare so I'm not going to go back on that. Your experience with dropping MTX sounds similar. My scalp however is improved to the point where although it does still itch at times, I'm not getting the sores. Hope you get sorted with your meds soon.
I'm in a similar position in that I feel that I just can't take MTX anymore because of the nausea and acid reflux. I'm waiting to see what my rheumy says, I really want a biologic but fear they're going to say no. It's all about meeting certain criteria. Good luck with it all xx
Are you taking your MTX orally? I don't get nausea or reflux with injected MTX. It was the sulpha that I had to stop due to nausea and reflux. If you're on oral, perhaps it would be worth asking if you can switch. I also found that the MTX worked better when injected.
No not orally I switched a year or so ago because of terrible nausea and it was OK for a while but now it's the same as taking pills
Oh that's disappointing. Hope that your Rheum sorts it out.
Just know that here in North Wales, it took12weeks for a Biologic med to be passed/ organised! I came off Sulfasalazine as stopped working. Still on Methotrexate, with me I thought it wasnt helping until I had to have a break due to liver enzymes- I suffered and couldnt wait to get back on. One size doesnt fit all unfortunately . Askif you meet the criteria for a better drug,Amgevita a biosimilar injection helps me at mo. No doubt that effect wont last and I will have to try another new med. Good luck
I think that coming off the MTX has made me realise how seriously I need to take my RA. Despite being seropositive, my symptoms were not typical (big joints most affected so pretty crippled but hands and feet not really problematic) and I always had my doubts that it was just the course of steroids that helped me through general rheumatism and that I didn't really need RA drugs. Now I know that I really do! In some ways coming off has convinced me that I really do have RA and not just 'pretending'!
I call it the disease that makes you feel like a hypochondriac on some days 🤣
I tend to look up NICE guidelines for any meds i get. You then know what the next steps are if the drug you are taking doesn't work. Google NICE Guidelines followed by the meds your taking and what for. Some meds we have to take a 2nd time b4 the consultant can confirm its not working and move you onto the next, keep nagging until you get a drug that works as we shouldn't be suffering once we find a drug that suits us
Hi Gottarelax
I’ve just been through exactly the same scenario as you
I actually rang the rheumatology helpline as I was going to stay in S. America for 3 months and I was feeling awful … after explaining my symptoms I was advised by the nurse specialist to stop my Metoject immediately… so I was then just taking my Sulfafazaline ….
Tbh the sickness , hair loss , fatigue , mouth ulcers etc went and these symptoms discontinued.., however the sulfa didn’t control my RD …. I had also been on triple therapy by the inclusion of Hydroxychloroquine but that didn’t make any difference in alleviating my symptoms so that drug was withdrawn a year or so ago from my medication therapy
Like you the dreaded RD symptoms came to the surface whilst I was in Brazil and I felt back to square one - as I was 3 years ago
My rheumatoid nodules continued to ‘flourish’ both in my hands and feet - not a pretty sight I guess but more painful and making it difficult to fit into my already knarned feet - the feet nodules have now been removed by my orthopaedic surgeon ) whist carrying out a bunion procedure) so it doesn’t feel as if I’ve got pebbles in my shoes …. but I’ve been advised they will return at some point
However I’m happy to report that my yearly appointment with my rheumatologist was yesterday and I was so pleased that he took the time to listen to my issues .
Seeing as my blood results and visual evidence of progression of RD in my hands feet wrists and shoulders was now worse and that I would now fall on the NICE guidelines / so he has recommended that I can now be put on Biologic therapy and has requested a lung scan and virology tests before he can actually write a prescription for me to be moved on to Biologics
Fingers crossed that if all my lung scan and blood test results are ok I can find something that can be more effective in controlling my RD
I’ve written such a lengthy post - but just to demonstrate to others who may come along the same path as me for the first time that there is hope and of course we’re all not all equal in our journey of treatments - but there can be light at the end of the tunnel but it’s only by trial and error that we can fall upon a treatment pathway that will suit our individual issues
I wish you well Gottarelax … and hope that you get better soon
Hi Skinclinic. Thank you for taking time to write your reply. I don't think that my symptoms are as bad as you've experienced but they are affecting my daily life so would like to get it all sorted. Your poor feet sound so painful! I think that for me, the next approach will be to go back onto the MTX and prove that side effects were real and not just an unrelated occurrence. If the symptoms come back, then I think that alternatives will be sought but I'm not sure that that will be a biologic as I don't fit the criteria which for my rheumatology clinic which appears solely based on hands and feet where I don't really get any symptoms.
I hope that your tests come out OK and that you can start your new treatment. Also, I hope that it works without any down sides.
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