Hi all, I’ve just been diagnosed with RA, and am facing a difficult choice about what drug medication to go for. I know so little about RA and am doing a crash course thanks to google. There are very alarming reports about the DMARDS and all other immuno suppressants.
I would love some feedback / reassurance on what you have all experienced. I know everyone is different, but the go to drug seems to be Methotrexate with all its potential side effects. It’s all bewildering. My RA factor is 256 and CCP 195. I’m told by my rheumatologist that I’m stage 1. Clearly treatment is better than the inflammation and pain, but what..
What has worked for you? Is anyone on sulfasalazine? That looks less harmful. How are your lives affected? Is remission likely? I’d like to think I’ll take this in my stride. But right now feel I’m looking down at dark tunnel and can’t see the light.
Any feedback would be most welcome.
Thank you in advance.
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TierradeGata
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Hello! I strongly recommend you ring the NRAS helpline and look at online or order hard copies of their booklets on being newly diagnosed and Medications. Don’t panic. Every drug manufacture lists every possible side effect and most of us don’t suffer them. It’s trial and error to find the drug that suits and works. Chances are you will have to try methotrexate at some point. Others will comment too. Welcome to our club.
Personally I would say that Google is the last place to look! I didn't do any research other than reading the leaflets that my rheumatology team gave me and looking at websites like NHS, NRAS and Versus Arthritis. I didn't read anything about possible side effects, just took whatever medication my consultant prescribed and apart from a few initial problems, did well on everything. I know that I'm one of the lucky ones but I do think that an optimistic approach helps. It's impossible to know whether something will suit you until you try it. I've ended up on Methotrexate, Hydroxychloroquin and Sulphasalzine and am doing well with manageable side effects.
This is a great forum with lots of support and understanding but if I'm honest, I'm quite pleased that I only found it after I'd started treatment as it is easy to be scared by the negative experiences of some posters; it's important to remember that the vast majority are settled on a regime that suits them and are just getting on with their lives 😉
Hi Boxerlady. I also only consult NRAS or NHS and was relieved to read of someone whose attitude is similar to mine. I was diagnosed more than 20 years ago and have been on methotrexate ever since. Approx 10 years ago they added the Abatacept biologic which I have by monthly infusion. Reading too much only adds to the stress which most people agree aggravates the condition.
Agree with musiclover re contacting NRAS, or downloading the booklets re meds.
I’ve been on methotrexate for 7yrs, with no side effects. The only one was slight thinning of my hair which settled down quickly. You are also closely monitored whilst on them, and any issues they will stop them. Also you may get lots on here saying about side effects. Those getting on with no issues, are getting on with life and don’t use forums so much.
I’d urge you to stop reading Dr Google and remember if 10% get side effects then 90 %don’t plus MTX is one medication that is first line of treatment not just here but USA etc it’s a well proven and if it works then great if not you’ll be guided to another. If your RA consultant thinks you’ll benefit from it then you’ve nothing to loose. It is true it doesn’t work for everyone but you can’t move on until you’ve given it a go. All RA meds have some side effects but equally they do mostly work. Even paracetamol can have side effects as do antibiotics ! Honestly please try not to worry it’ll make it more stressful to start and be positive.RA needs treating and it’s a blip but not the end of normal life for the huge majority of patients. As others have said look up NRAS website it’s full of useful information.
I am in a similar position having recently been diagnosed ( with me it's seronegative inflammatory arthritis ) I always avoid Google and only stick to respected sites such as NRAS and versus arthritis. The NRAS team are so helpful.Personally I don't want my arthritis to get any worse, so taking a DMARD should slow any further progression. I read all the leaflets and yes, like any medication ( and I am on many for other health problems ) side effects are so scary - but remember, we take them to find their benefits of course.
I took my first methotrexate injection last night. I already have gastric problems so was really worried. So far, a little indigestion and metallic taste in the mouth and extra fatigue. Hopefully this is temporary. Have folic acid tablets to help this.
What I am trying to say is ( I yes, I know it's only the first one) I expected to get every side effect under the sun. Right now, I am glad and relieved I have begun the first step to help my body.
In reality your best move is to listen to your rheumatologist…as you are finding RA is not a one size fits all disease, & at the beginning of your RA journey it really is best to trust a Doctor who has studied RA for years, understands your particular symptoms and has your best interests at heart…& put Dr Google on the back burner until you understand in reality what is on offer. You will read the horror stories of Methotrexate..but I took it like smarties for years…until it just stopped working….so don’t refuse it just because you read of some people’s bad experiences.
We can tell you what drugs we take & how they affect us…but that probably won’t help, because at the beginning it really does take patience & what suits A…does not necessarily suit B & you need be able to rise above the unwanted side effects & be patient
Dr Google should be left well alone until you have more understanding of what you are dealing with…even then..don’t spend too much time there.
But don’t despair….many of us here are doing fine & being diagnosed 20+ years ago….we didn’t have the advantage if all the drugs you now have at your fingertips.
I wish you well on the journey…..that none of us want to travel..but we do & often the destination is above & beyond.
Symptoms, tests, diagnosis……it comes as a huge Whoosh! and plays with all of the senses! No wonder you are anxious and unsure ! It certainly takes a while to process everything !
NRAS and this site are an enormous help for both practical and emotional support so please reach out whenever you need support.
From my own experience (my Bio is available if it helps) I followed the advice of my rheumy but please don’t be worried about reporting any side effects to your rheumy team as alternatives can be found together with the tweaking the dosages etc.
I sincerely hope you find a medication that works for you quickly and I’m sending a gentle hug and my very best wishes 😊
Thank you to everyone who has replied. What a wonderful response and reassurance it has given me. Being a newbie is indeed overwhelming. But yesterday I felt lifted by reading all your experiences. You are all taking it in your stride, so I have hope for me too - that before long it won’t be centre stage but merely a blip in my world.
I’m going to follow my rheumatologist’s advice and go for MTX. And perhaps injectable too, though I’ll need to do this myself. I inject cats regularly, but not sure where the human “scruff of the neck” is??
What I have also got from your feedback is that it’s ok to ask for help. Hitherto being fiercely independent, it’s time to ask and receive.
Thank you all. I haven’t been a forum person before now, but feel the benefit of taking this step already!! 🙏
I agree with all of your previous responses - just to add that if you read about side effects of MX you need to remember that the info is also for cancer patients who have the drug at much higher doses.
I was 16 or 18 when I was put on MTX, 10-12 years after diagnosis. Apparently I was one of the first to take it for RA, but with no internet, I didn't know that at the time. The only times I've paused MTX was for two pregnancies and once when my neutrophils went low. I'm 60 this year.
I can't say I've had any real problems with it, the benefits outweigh any negatives. The problem with googling this stuff is you'll end up reading a load of bad things because the good stuff doesn't get reported. I'd tell your rheumatologist that its bewildering and be guided by them. You never know, you may be another one that gets on ok with MTX.
Hi. You ask specifically if you can go into remission. I’ve been told I am in remission (which I think really means lack of symptoms). I’m on methotrexate. It’s the drug they first prescribe I believe. First days of diagnosis are a shock but I’m sure you’ll adjust. Great advice here.
Sorry to hear you're dealing with all this, it's hard, especially at the start. I was diagnosed with RA about 2.5 years ago and look back on the initial stage around diagnosis, pre-treatment, as the hardest - both in terms of symptoms and uncertainty. Both will improve, I promise you.
I can't add anything to the great advice above about methotrexate and other medications, except to say: remember no medication decision is ever fixed and permanent. If you try a medication and it doesn't suit you or doesn't work, it can be changed. It happens all the time.
The best thing is to get started on disease-modifying treatment as soon as possible so that you can find which ones work for you. Methotrexate, sulfasalazine, leflunomide and hydroxychloroquine are the usual first-line treatments depending on your situation and disease activity, so one or a combination of these is likely to be the starting point. Has your rheumatologist made any recommendations?
Wishing you all the very best. And there's always a listening ear here for you.
it’s hard to stay positive when you’ve just been given a diagnosis of RA but at the start of your journey a little bit of optimism can help get you through each day.
I was diagnosed in 2009 and put on methatrexate and still remain on it today with no issues whatsoever . Over the course of the 15yrs the dosage has gone from between 10mg and 15mg depending on how I’m doing , if I get ill with say a chest infection or whatever then I’ll come of the medication for a couple of weeks. I have routine blood test every 3 months.
This is my story and I know we are all different but I guess what I’m trying to say is don’t be put off by everything you read about these drugs, we don’t know how our bodies will cope with something until we’ve tried it. You will be well monitored during your RA journey.
It's all very scary at the start of uour journey. No-one likes to have to take these strong drugs but what's the alternative? Methotrexate has been around for decades and is used for a number of conditions. I was on methotrexate for a short while. The good side effect was my joints moved like those of a 2 year old, I felt I could have done anything. They monitor you regularly and unfortunately my liver wasn't a fan of it so I was changed pretty quickly on to a different drug but my joints still wish they were on MTX. They list all the side effects for legal reasons but it is a very well established drug and hopefully will be a good match for you.
Welcome to the forum. It's understandable you are worried having just been diagnosed and reading about treatment options. I agree with others about not relying on google for information and contacting the NRAS and reading their booklets - they really are excellent.
You will be guided by your rheumatologist about the best course of treatment for you. You asked about people's actual lived experience of treatments. It's so important to remember that we are all unique and our experiences of medications will differ. So please don't read too much into other's experiences (mine included!) as you may well have a totally different reaction.
I started on Sulfasalazine, had no side effects whatsoever, but unfortunately it didn't work on my RA. I was switched to Methotrexate (MTX) (15mg). It didn't work to start so the dose was increased to 20mg (orally) and for the last two years it has worked in controlling my RA.
I did feel pretty unwell when I first started the MTX. I struggled with nausea for a while until following advice from people here, I requested the folic acid was increased from one to six tablets per week. That completely stopped the nausea, so it's worth keeping that in mind if you are precribed MTX, I struggled for longer than I needed to before asking rheumatology for help.
Over time I have been feeling unwell with other possible side effects - but it is important to say whilst I suspect it, I am not certain this is being caused by the MTX, so I am in the process of trying to find out. As I said we are all different and what medication works for some doesn't for others, so there may be some trying different meds until you find the one that best works.
I've been methotrexate more than 20 years now with no side effects. It worked effectively alone for 8 years or so and then the RA flared, had various add-ins and now settled still with MTX + Benepali. It works. I'm grateful daily that there are these meds to keep it under control; I wouldn't want or be able to continue living with the horrendous pain that comes with the RA. It's good that you are diagnosed, follow the advice of your rheumatology team
I was put on both MTX and sulpha. I am absolutely fine on MTX but had to switch to the injectable because that delivers a stronger dose which I needed. I also prefer this way of taking it. I had to stop the sulpha which didn't do anything for me (we are all different and it works for many) and just gave me too much acid reflux. The hospital/GP should monitor you and let you know straight away if you have any problems with the MTX. So far (2 years in) my bloods have all come back fine. I take at night so if there are immediate side effects I sleep through them and so I'm not aware of any problems. When I first started taking them I felt a bit groggy the next day, but that may be because I was looking for symptoms having read all the contraindications and I was feeling much more ill generally then with active RA.
Edited to add that I'm on the strongest dose of 25 mg injected.
Hi Sorry to hear of your diagnosis. Like many others have said. Joining NRAS and Versus Arthritis and connecting with their helpline is vital for newbies to be reassured by their knowledge, also your rheumatologist and wider team who care for you.
I understand not wanting to go on the drugs, it's a difficult thing to take in, but doing nothing will allow the RA to escalate which in time could cause many other problems. Everyone is different and what suits one doesn't suit another so it's trial and error until you find what works for you. Methotrexate suits many people and they do well on it.
I've had sJIA for 51 years and so have pretty much exhausted the DMARDS. I'm now on biologics and steroids.
Self care is also a must to keep your joints as strong as possible. Find an exercise routine with your physio and practice this every day. It is vital to do stretches and keep your muscles and tendons strong and flexible. It will pay you dividends in the long run. Strong muscles protect joints.
You can also help by eating a balanced diet, staying active within your comfort range and taking quality supplements to keep your body healthy. That isn't to say you can't enjoy yourself.
Collectively, applying the self help and taking the meds will help you be the best you can be allowing you to take the minimal dose possible to keep you stable.
Loads of luck. This is a great forum and there is much knowledge available for you to tap into when you need it. Never be alone xx
Well I can tell you my friend of 50years who had dreadfully debilitating, house-bound stylee RA for years finally went on Methotrexate and it gave her back her life!
I strongly recommend it myself too as I hav lupus and sjogrens and without it the lesions return and the even more dreadful joint/tendon/muscle/you name it returns so I cannot get out of bed. I've been on it for 7yrs now and a big fan. You do have to have a lot of monitoring blood-test wise for the first year and then it calms down to every 3mths. It's worth the bother, in both mine and my friend's cases, I can tell you. I came off it for an op some years back and BAM the lesions and pain returned so I can't come off it at all now.
Hoping this helps.. try not to worry it's so much better than not being on it, and I've only had (maybe) some tummy issues from it.. but not even sure if it's that tbh.. probably my Sjogrens which is vile to the GI tract.
Hi TierradeGataI am on sulphasalazine. Changed from methotrexate due to side effects (extreme hairloss and painful scalp) by rheumatologist who said it was considered a milder drug. I have had an ok time on it, roughly 2 years, with few side effects, mainly stomach related which I find manageable. Hair returned to normal.
Hi I am on MTX injections at first I was on tablets , but I was quite nauseous on them , then I changed to injections which are quite painless, I worried about them and was reassured by people on here and now my PsRA is under control for the most part and can just get on with life . Definitely ring your Rheumy nurse and get alll the info you need . You can always change meds but you would need to take them for about 4-6 months to see if they work and most side effects would be settled by then as well Good luck c
I've been on Methotrexate (and Sulfasalazine) for about 5 years. The pain I endured until these dmards took real effect was excruciating. I would have taken anything to get rid of the pain. I also did a pile of research on MTX and was somewhat alarmed at the side effects.
After about a month or two, I told my then doctor that I did not have any nausea at all. He just looked at me and said, "well, you don't have to have nausea you know."
I have the greatest respect for MTX because I have very little damage so far and the mouth sores and other quirky things disappeared after about 3 months. Hair loss has been substantial but that doesn't hurt, right?
Lastly, although my dose is maxed it took a full year for me to be able to say, remission is here. The Sulfasalazine was also a fairly high dose but I have been able to cut it in half now. The benefits for me have been good. Hope this information helps you.
Everyone is different and we can only tell you our experiences. When diagnosed 6 years ago I did a lot of research on side effects of different medications. I chose sulfasalazine due to less side effects. I have only 2 minor side effects (remember everyone is different). If I take it within 3 hours of bedtime, I get severe heartburn. The other is from the lowering of my immune system. I now catch colds a couple of times a year. I never caught a cold before. I also discovered that gluten (from wheat) causes a lot of inflammation for me. I do better, with less pain if I stay away from wheat. Best of luck with your decision.
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