Any experience with methotrexate alternatives?

[DrJJ]

Has anyone been started on a drug other than methotrexate as an initial medication? I have been on hydroxychloroquine for a few years for very mild RA, but my symptoms are starting to increase and my rheumatologist only ever talks about methotrexate as the next level of drug. I am really not keen as my mum had a very bad reaction to methotrexate some years ago and I would like to avoid if possible. I have looked at the NICE guidelines and they mention that sulfasalazine and leflunomide can also be given as the first-line treatment (with hydroxychloroquine for those with mild disease). Is it just my rheumatologist, or are sulfasalazine and leflunomide rarely used, and if so, does anyone know why?

[Wobbies]

I went straight on to biologics and missed the MTX stage. Later, MTX was added in but I can't live with the side effects so have stopped it. So, NICE guidelines are not always followed.

[DrJJ in reply to Wobbies]

That is useful to know Wobbies. Thanks for sharing. Do you know why you skipped that stage? I have a phone appointment later in the week and it is so useful to know other people's experiences

[Wobbies in reply to DrJJ]

I think that my rheumy is just a very compassionate man who manages to do that for everyone. Am surprised the local Trust stand for it. Biologics have been side effect free for me and so much better. When they worked, they really worked well, but unfortunately have had 2 which after a while have failed and am expecting a change to a third one. Although when I started MTX I went straight on to injections, I have IBS and it was awful on my digestive system. However, my sister took it for 12 years with no problem. She has only recently started having problems with it. So, it is horses for courses I suppose.

[DrJJ in reply to Wobbies]

I'm really glad you have found a good rheumatologist! And really good to hear the positive experience that your sister has had. It seems to be such a lottery! Both with specialists and with the medication...

[Wobbies in reply to DrJJ]

That is sadly so true.

[bpeal1]

I started on sulphasalazine. I later tried adding Methotrexate but it didn't suit me so swapped it to Leflunomide. Have you discussed your concerns about methotrexate with the rheumatology team? Hopefully they can either reassure you about it or suggest an alternative.

[DrJJ in reply to bpeal1]

Thanks bpeal1. Every time I have raised my concerns they have just said that methotrexate is ok and lots of people take it without any problems... They have never mentioned the other options to me. I will ask again at my next appointment, which is this week.

[Hidden]

Hi DrJJ

I was on methotrexate tablets for psoriasis and psoriatic arthritis but had adverse reactions (hair falling out and throat closing up)

I've been on Imraldi (Adalimumab) biologic injections for over 2 yrs now and it has been great - joints a bit up n down lately but had a superb pain free stretch for a year and a half; skin is still clear so been advised to stick with it til my next review in 6 mnths. (There are a range of biologics)

For psoriasis, methotrexate is often suggested as a first port of call after light treatment loses its effectiveness - not sure about your situation.

Yes I've heard a fair number of people talk of adverse reactions to MTX.

I stopped taking methotrexate after about six weeks but raised concerns after two. I really think biologics are excellent.

Slightly different in that my prescriptions are through Dermatology clinic (though I have Rheumatology check ups, not as many decisions taken there).

Hopefully you'll have options you can explore through Rheumatology. All the best. Lindsay x

[AgedCrone]

Mtx is either for you or it’s not & the only way you will know is to try it I’m afraid,Personally I had seven very good years on it…..I could have forgotten I had RA …..until it just stopped working.

Hydroxy & Leflunomide however we’re big NoNo’s….so it really is try it & see with all RA meds.

Hope the Mtx suits you.

[helixhelix]

I have taken methotrexate for 11 years with no problems. It affects us each individually. And remember you can stop a drug if it doesn’t suit.

I was also on triple therapy of MTX, Sulpha and Hydroxy for many years which worked fine. The Sulpha took a few months to get used to as gave me a VERY excitable digestive system.

The usual alternative to MTX is Leflunomide. It is generally considered to be as effective although not recommended for people with high blood pressure I believe. Sulpha is less strong as a drug.

Doctors tend to go on probabilities, and MTX is the most likely to work the most effectively so that is the front line drug.

Talk to your doctor about your concerns. Your body, your choice!

[Boxerlady]

Methotrexate is often said to be the gold standard of treatment so, although it's definitely up to you in the final analysis, it might well be worth a try.

I've been on it since my initial diagnosis in 2019. I started Hydroxychloroquin at the same time and Sulphasalzine was added last year and the combination is working well for me. I did suspect that's Sulphasalzine was doing most of the heavy lifting but when I missed 3 weeks of Methotrexate recently, my joints really complained so I was actually relieved to restart it.

[Madmusiclover]

I’ve had all 4. Didn’t get on with any but protocol was you have to try them ( in particular metho at 20mg for x weeks) before biologics can be prescribed. Had to try a few of those too! 🙄

[Hidden]

I had hydroxychloroquine to start with and then sulfasalazine when it didn’t work. The consultant said he usually moves from hydroxychloroquine straight to methotrexate as you need to have had methotrexate before being eligible for a biologic and only offers sulfasalazine in case someone really wants to avoid methotrexate/has more mild disease/wants to get pregnant (my case). I dropped my blood counts on sulfasalazine. I had to try methotrexate before I could be considered for a biologic despite wanting to get pregnant - also dropped my counts. As I was a bit borderline for a biologic they would have offered me leflunomide had I wanted to try it (but you can’t get pregnant on it and for months after the last dose of it so they didn’t recommend it for that reason). I chose to see how I would cope off the methotrexate and deteriorated quite quickly and am now on Adalimumab.In my experience you don’t have to take methotrexate straight off and am sure you could ask to try sulfasalazine or leflunomide as long as there are no contraindications to them for you. I think it is rare to be able to bypass methotrexate on your way to a biologic unless it is medically contraindicated. Just have the discussion with your team, they should take the time to listen and think about which drug you take or move to next with you - it’s in their interest, you‘ll be more likely to take it!! Good luck!

[Mmrr]

I was prescribed Sulphasalazine as my second medication after Hydroxychloroquine did not work for me. I've been on many RA medications, I'm now taking leflunomide and a JAK inhibitor which are working better than anything so far.

[Madmusiclover]

Love JAKs

[JEM95]

I’ve been on it for 9 years and to be honest it’s given me my life back. I started off with Hydroxychloroquine then had MXT added in and the combination worked. I had lots of nausea so switched to injections which was so much better. I inched up to 22.5mg gradually.I had to stop Hydroxy and realised most of the worst side effects were from that.

I now take Benepali and MXT. Sadly I had to wait years to get a biologic, now you can try them much earlier.

I would try MXT with an open mind - it sounds like you are against it already. All these RA drugs can take several months to work and it’s a constant round of tweaking and adjusting the cocktail of drugs.

I’m now down to 15mg and Benepali and looking to reduce the MXT further.

Good luck, keep positive and I hope it goes well for you x

[Whezziewhoozie]

Hi I am on sulfasalazine and a biologic but I am of child bearing age. It certainly was not easy to avoid MTX as to get a biologic you need to have failed MTX or you have to go for special funding that allows you to skip the MTX stage and go straight for a biologic.

My consultant at the time was not keen to do all the paper work associated with me skipping methotrexate so I had to fail it. Apparently the local health authority can be really tricky about it if you need a biologic but I obviously did but want MTX as I might still have children.

That’s my experience,

[DrJJ]

Thanks for sharing everyone. I hadn't thought of the fact I need to give it a try to be eligible for a biologic. I have been really against it, but perhaps I should be more open minded. I do need something else as I am really starting to go downhill. Trouble is, my increase in RA symptoms seems to be coinciding with a blood pressure increase and menopausal issues. I feel like I'm falling apart from all angles!

[dawkin_S in reply to DrJJ]

I was on hydroxy alone for quite a while, as I was scared of methotrexate, before I started getting more pain and flares and went on mtx as well. In hindsight I wish I had started it earlier, as offered, as it really works for me. I do get one half day ‘wiped out’ by it, and when I started on it the side effects were worse but adding more folic acid (every non-mtx day) has really knocked that on the head. As everyone says, it might work brilliantly for you and with the regular blood tests you’ll get you can be reassured that it’s being monitored for you.

[marie66]

Hi I’ve had relatively good years on methotrexate and hydroxy apart from nausea side effects for which I take a anti sickness pill, it’s kept most of my swelling down. Sulfasalazine and Leflunomide didn’t work for me at all, vomiting and digestion issues. It seems everyone’s different. I’m currently struggling with an infection (may/may not be related) but over the last 8 years, Methotrexate definitely has helped me. M x

[Garnacha]

Hi I was started on etoricoxib then a month later hydroxychloroquine, things were not improving so methotrexate was added in, this was over a 9 month period, 4 months later & still waiting for some relief so lefluminode was added to, in Sept last year the dose was increased from 10 to 20mg, could actually feel some improvement but had to miss some doses of methotrexate in October because I needed antibiotics, still not back to where I was before & didn't realise how much methotrexate was helping till I missed those doses, I'm probably going to have to swap the lefluminode for sulfazine as it's causing me peripheral neuropathy but tbh I'm dreading changing as sulfazine can take up to 6 months to work, I'm already back on prednisolone 🙄 you can certainly hear me coming, I shake rattle & roll 🤣 Good luck with whatever option you have x

[nomoreheels]

Like you I also had limited joint involvement but thanks to a GP with a special interest in Rheumatology I was referred & diagnosed early. As a result I started on HCQ but as I was having increasing problems & there’s only the 2 doses (I was on 400mg/day) it was recommended I started MTX. I've been on it 12 years but have problems on higher doses. As a result I've tried double therapy with SSZ (stopped) & LEF (tested for peripheral neuropathy/carpal tunnel - halted, repeat tests proved conclusively a result of LEF) so I didn't go back after halting for tests. Both these cDMARDs are less potent than MTX but it's your choice in the end, you may respond well to either, by the same token you may to MTX too but you sure as heck won't know til you try. You can always stop, you have an input into making choices, just as I did, this is the same for any med. I made the choice of not going higher than my current MTX dose so my prednisolone has had a slight increase which at the mo is keeping things sort of ok.

With your Rheumy having suggested you give MTX a try for a good while now it does suggest he sees room for improvement. It's not a given you'll have similar issues to your Mum, plus she was a good bit older than you are, as was her liver. Maybe a compromise could be agreed… possibly suggest a low starting dose increasing over months, see how things go activity-wise & with new med fortnightly blood tests for at least 6 weeks any unusual readings will be picked up. Plus you should see some improvement before the 12 week mark. If you don't then continue until you do or if you have less tolerable side effects which aren't eased by folic acid or a change to injections discuss your options again.

I do hope you make the correct, informed decision. Only you know what's best for you. I can say that I’d have had a proper row with anyone who'd suggested taking me off MTX without a reasonable reason a good while ago!

One more thing, should you need to progress onto biologics the guidelines include having tried MTX, unless there's good reason not to. I don't think funding will be accepted on your current reasons. 😉

[Knit12]

I went straight on to sulphasalazine when I was diagnosed, and it was great for about 15 years. I don’t know if it has anything to do with costs, but as you are still relatively mild you would not be on a high dosage of any drug

Everybody reacts differently to drugs, your experience might be totally different to your mums. Speaking as someone who has terrible side affects from drugs and I’ve been on over 10 for my RA during the last 2 years, I have not found one drug that does not give you side effects, it is just finding the ones you can live with

Hope you find something suitable

[Jimminey]

I started on Sulfaslazine after being diagnosed with RA in '18 and it did wonders for 7 months. It also seemed to be involved in getting rid of anxiety, which I had with a high rheumatoid factor before symptoms of RA showed.

RA symptoms then came back and dose increased to no avail. Started Mtx in '19, also to no avail but with no bad side effects, then Adalimumab in '20, also to no avail (although I don't know if the symptoms would have been worse without it - and Mtx likewise). Now on Sulfa, Mtx and Rituximab and keeping fingers crossed.

I hope this is of some help, but it would seem to me that symptoms and progression of RA varies so much between different people. But I think it's useful to share experiences.

[DrJJ]

So, I got to talk to my rheumatologist yesterday and I did manage to discuss other options. She was quite open to the idea, but, as many of you pointed out, methotrexate is the 'gold standard' so that was the recommendation. I have a face-to-face meeting with her 'soon' so we will discuss it further then and make a decision.

I feel very highly-strung at the moment, which can't be helping my symptoms (or high blood pressure), but perhaps by the time I get the appointment things will have calmed down a bit.