Iv was diagnosed with RA in December and have been on hydroxychloroquine since but it hasn’t helped. I started sulfasalazine around 2 weeks ago…
week 1 (x1 tab) I was ok, the day I was due to increase to x2 I felt dizzy, I took x2 for a day or two then fell poorly so stopped taking them. I started again 2 days after taking x2 and this wave of depression hit me and I was crying daily so I stopped again. Doctors think it’s too soon for the meds to cause side effects of depression but I’ve honestly never felt so low in my life. I feel a little better since stopping them (again) but my doc has said to try the dosage again to confirm that it is the tablets causing depression. I’ve had everything riding on these tablets because all of the other treatments TERRIFY me. I don’t know if all of this is just in my head and because I became dizzy I’ve freaked myself out thinking they’re not going to work…
Im a mess
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Sms94
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Can I ask why the other treatments terrify you? It's very easy to get misled by all the bad experiences you can read online but it's often the case that people only report negative things whereas there are many more people doing well and getting on with their lives.
I'm on triple therapy - Methotrexate, Sulphasalzine and Hydroxychloroquin - and have been very lucky in that the only side effect that hasn't disappeared after a few days is the tiredness and foggy head - sometimes known as the Methotrexate hangover - but that only lasts for a day at most and is perfectly manageable.
I don't read up on possible side effects before starting a medication and try to go in with an open mind and the optimistic approach that it's going to be fine. I know that there are many other options out there if one doesn't suit me so I try to tell myself that and not preempt problems. I realise that it's easier said than done but if you can try to do that, hopefully you'll find "your" medication regime.
I did have a few days of low mood each week when I first started Methotrexate but when I told the rheumy nurse, she increased my Folic Acid and that sorted it out for me. It's important that you report how you feel to your team and work with them to find something that suits you.
Hopefully you'll get other responses as this is a great forum with lots of supportive members. There's information on the NRAS website and a helpline which many people have found invaluable so do consider ringing that if you continue to struggle.
I’m terrified of immunosuppressants. Well no, all medication if I’m honest so this is my biggest nightmare. Before this I didn’t even take headache tablets!Side effects and long term effects scare me but so does this disease because my hands are in discomfort.
I just don’t know what to do.
I want children in the next 3 years ish but meds won’t allow
I have to say that I've always been more scared of permanent joint damage than anything else so I've been happy to try any medication suggested by my rheumy. Hopefully you've told your team about wanting to start a family as they should be able to help you find the right medication regime. You definitely don't want painful, possibly damaged joints when looking after children.
If you’re on triple therapy you are already using immunosuppressants. The whole issue of these auto immune diseases are that they are caused by an over reactive immune system so need to be suppressed. Don’t worry. It’s far better to be well and pain free. I have weekly injections of Benepali. I was well on triple therapy for years then had a sudden and dramatic long period of massive flare ups. I couldn’t walk, standing up and sitting down were a problem, I couldn’t even pick things up or e.g. open jars that had been previously opened. No pain relief worked…etc. THEN I GOT MY BIOLOGICS - first Enbrel and now the bio similar Benepali and within 3/4 weeks I started to get better - with help from my wonderful physio team I regained almost all of the movement and strength I had lost and I now function nearly normally again and no one has any clue I have RA.
And again as Boxerlady says your team should be able to find the right regime for you support you in your journey of having children. I’ve also tried anything suggested by my team and I don’t regret it for a moment.
All I can add is I didn’t get on with Sulfa either. I think I lasted 4 days. It took me 5 drug attempts and nearly 3 years til I got a drug that worked and I felt good on. With regard to drugs to control RA it’s not just your joints RA can effect. Have a look at NRAS website if you haven’t already. In my view you need to find a drug that works for you. You WILL be monitored whilst on them. I’m sorry you are terrified of taking medication but there really isn’t an alternative for us.
Each cycle of trying a new drug took about 6 months. However I didn’t stay on them all for 6 months. Can you ask for steroids in the meantime? Good advice above to ring NRAS helpline. X
Hi just to say that I was really scared of taking Methotrexate too given the negative things that can be read about it online. However I have had periods where I couldn’t use my hands at all - I couldn’t open a tin or even butter a slice of bread. Methotrexate gave me the use of my hands back and I guess that’s what you have to weigh up. I’ve been taking it since 2016 and with tweaks to my Folic Acid - taking it 6 times a week instead of 3 - I’ve been able to stay on top of most of the side effects. I don’t want to lose the use of my hands - so it’s whatever it takes really. Good luck moving forward with your treatment- everyone finds the mix of medication and lifestyle changes that work for them.
Firstly, it is very difficult coming to terms with diagnosis of a life long condition. We go through an emotional process, as we would with anything that has a major impact on our lives. Depression may be part of that process, especially if you’re worried about medication and the side effects.
Secondly, the medication we take is pretty scary if you concentrate on the possible side effects rather than the benefits. I always read the leaflets and look up the side effects, but have learned, over the past 20+ years that the benefits of a medication that prevents damage to your body, far outweigh the possible side effects. Not that we should put up with side effects if they cause too much discomfort, so the balance is always - disease control and pain relief v side effects.
Lastly, it is important that we become our own best friend, be kind to ourselves and try to rationalise our fear and mistrust.
When you find a medication that works for you, it’s like a magic bullet. However, finding that is trial and error. Many of us have been on a long list of DMARDs and Biologics, some have been lucky and quickly found their magic bullet… The point is when you do, it is life changing.
I hope you find the one that works for you quickly.
Oh bless you. I really feel for you. It is a scary time and taking the medications is scary too but sadly, this disease will not go away and if you don't take the meds prescribed by your rheumatologist you are going to have bigger problems in the future. I have taken methotrexate for 20 years now. Yes, I had major problems with RA at first, sometimes not being able to move at all without excrutiating pain but methotrexate gave me my life back. I can honestly say that I have never had a day feeling sick on mxt. I know many people have had problems but then they change to something else and they are better on that. Please remember that your rheumy team is there to give you as pain free a life as possible. They want to help you and they are marvellous. You must put your trust in them. They will help you but they can only do that if you are honest with them. They can't read minds so let them know what worries you and what issues you have and they will sort it. I truly hope you can relax about the drugs more and you reach remission as I have done. Lots of love. x
Hi. I’m sorry you are struggling. It’s a tough diagnosis to process. My mental health has suffered a lot as it’s taken me nearly 3 years to find a treatment that helps - I’m only just now trying to sort out my head and my life. I couldn’t take Sulfasalazine - can’t quite explain it but I just felt terrible mentally and physically. I tried to take it for a couple of months, unsure if the side effects were real, but when I stopped it the weird feeling stopped. Now I tell people I am allergic to it and sometimes I get a raised eyebrow from the consultants, but at the end of day, only you know how bad you are feeling. Ask for a steroid injection while you try to find the med that works for you. Good luck xx
Relax…take a step back, &think about how many people take drugs for RA……I think very few off us settled instantly on the first drugs we were prescribed….and most of us have had a few blips along the way to finding a regime that lets us lead a good life.But once the disease is controlled …most people don’t write & say so.You were diagnosed less than six months ago & taken SSZ for only two weeks ….from your post I get the feeling you still haven’t accepted that taking Disease Modifying Drugs like Hydroxy & Sulphasalazine will really help you …& frankly in such a short time…it’s likely they won’t.
So un freak yourself….. there are thousands of us here who are proof that DMards DO WORK……but not overnight.
Reading all the downsides of lots of drugs you are quite likely never to take is not helping you……so just don’t upset yourself by doing it!
To most people RA is a completely unknown quantity……& suddenly having to accept, confront it & deal with it - is not at all easy.
If you have a rheumatology nurse give her a call & ask her advice…these days there are so many different medications prescribed for RA it is not necessary to “soldier on” if it is the drugs that are causing your symptoms…but you do need to give them a reasonable amount of time to work.
I was diagnosed over 20 years ago & have had my ups & downs……..& I now lead a comfortable mostly painfree life.
If you want to avoid all the side effects that uncontrolled RA can cause …….try to believe there is a medication that will help you…but it will take time to find it ….then you will be really pleased you persevered with your treatment.
.Now try to enjoy your weekend…& speak to your rheumy team as soon as you can.
Hi Sinead. I know exactly how you feel. I was first diagnosed with RA in 1992. (I was 21). I had an awful time with my meds too. I was on about 6 tabs a day of Sulphasalazine, about 5 a day of Indocid, steroids, painkillers. I felt sick permanently. Non stop. Then 1 day my brain had an overload. My brother in law walked in to the room & i looked at him & said WHO ARE YOU? He & my husband laughed. Thought i was joking. But my face was totally blank. I couldn’t read or write. I couldn’t make sense of anything. I was a zombie. They rang my Consultant & straight away she said. Don’t worry. We’ll just lower the dose. Within 24 hrs, i was ‘normal’ again. Still in agony. Could hardly walk. But at least i was ‘in this world’. Then a few days later. The nausea suddenly stopped. I’ve been on a 6 weekly infusion of Infliximab for the past 17 yrs. without it? I can’t bloody walk. This stuff is fantastic!
But our bodies need time to get used to things we put in it. In a way i was lucky. The internet wasn’t as readily available as now. So i couldn’t read about as many bad experiences. I just listened to the ‘experts’.
Can i suggest you try the Sulpha again. But try not to think about it so much. It’s been so long since i took them. Are you meant to take them on a full stomach? Maybe you hadn’t eaten enough when you took them? Or even if you did feel dizzy. Take it when you’re in bed. Maybe get a cuppa ready, with a good book & read afterwards. Or i always say. A good comedy on your tablet, (while you’re taking your tablets!!) Can really help. I always find humour helps me immensely. Great therapy. Try not not to think about it so much. Don’t start cleaning, or running around after you’ve taken it. Just try & relax. I know these things can be scary. But there are loads more treatments out there now. So if the Sulpha doesn’t work. I’m sure they’ll find something. Give it time. Good luck x
We can all get worried re medications…but without being patronising…it does us good to remember how unlucky we are to have these autoimmune problems….but how lucky we really are to live in ‘developed’ countries where we have access( yes, it can be tricky) to advanced treatments….I’ve been in sulphasalazine( single therapy)for 6 years and no major problems
I am very similar to you. I don’t take anything unless I am desperate recently paracetamol! I had to take MXT and sulphasalazine together when first diagnosed.I did take antidepressants for a while. I am now on biologics and it has changed my life. No side effects either.
The medication isn’t instant and it can take a while for them to work. Sometimes it takes different combinations for them to work. I looked at the medication as a positive now, without it the RA will cause damage. I waited too long before I went to GP so I know how quickly the damage can happen!!!!
Get advice from NRAS. Contact your nurse for advice if your struggling. The best thing for me was talking to people who understand the illness.
I am pretty much a new patient too. Diagnosed in December 2020.
I started with Methotrexate 25mg but was not enough. They suggested Hydroxichloroquine- I soon decided I cannot tolerate it and more I am allergic to it. Tried Sulfasalazine and same never been able to go up to what was prescribed 2tb morning, 2 evening. When I tried that I experienced tremors, blurred vision, heart speeding, dizziness, panicking a lot - which in fact was not just my imagination I just couldn't tolerate it and the dose gave me those symptoms that contributed to panicking. I personally listen to my body, it tells me more than everybody therefore I am the expert.
I am the biggest expert, nobody else knows me more than myself.
I stayed on Methotrexate and Sulfasalazine for 8 months started getting back on track after 4-5 months, in January this year I requested to reduce the dose of Methotrexate as I reached a point where I was terrified to take my weekly injection because of the side effects. I felt it was too much. They reduced it. I had a week of symptoms coming back like but my body has settled itself afterwards like regaining balance. It was that it noticed the reduction. I got scared thinking it wasn't the best idea but it was. I continued with Sulfasalazine 1tb x twice day - as mentioned this dose was the highest I tolerated ish...
In April been seen by the consultant, I mentioned about me skipping Sulfasalazine sometimes as this was happening lately just felt I couldn't take it some days. Particularly at night time, my pulse would go and stay above 100 for hours, tremors....So the doctor suggested to start reducing the dose to half for 3-4 months and then stop completely.
But then contracted COVID-19 last month, stopped my medication completely and surprisingly I was good for the whole 3 weeks without medication ( had COVID-19 symptoms for 2 weeks and been advised not to restart medication until completely free of symptoms).
My plan is to resume Methotrexate but forget about Sulfasalazine completely as I seem to be fine. Will see... but my body doesn't lie....
I told you my story to encourage you start believing in yourself and in your body saying. I felt down as well, depressed, last year was awful, not to mention the period of waiting to be seen when given steroids.....😖😵💫🤯
In fact we are all different and there is no specific medication for our illness, it is like we are the lab mouses which they make experiences on. Listen to your body and speak to your doctor about it. You'll find the treatment and dose that suits you best, believe me....
Hear what you’re saying and agree you should listen to your body but sometimes you just have to go through the tough stuff. Sometimes things which have worked work less well or even stop working. I was well on triple therapy for years. Saw the RA doctor in December. Had a cheerful chat with him and said see you next year. ONE MONTH later I was back there in extreme pain everywhere and unable to walk, pick things up, or do anything at all. Eventually biologics sorted it now and I’m now a fully functioning person again. No one would guess I have RA. BUT THERE YOU ARE. ITS A VERY UNPREDICTABLE CONDITION.
Don’t worry Sineadmichele. Eventually they’ll get your drug regime right and you’ll feel much better. Everyone in here has had their own problems and they do have a habit of coming back and biting us again but there is life after RA diagnosis and it can and will be good again. If you really must read about side effects, look at the common ones, they’re much less scary and much more likely than the ‘worse ones at the end!!’
Just be reassured that there is treatment out there for you too.
I’ve gone from being able to do nothing to being back on our two allotments digging and working as hard as others and leading volunteer gardening group weeks for a Christian retreat centre. I can’t walk huge distances but I’m well and live a very near normal life.
I’ll look forward to hearing you’re feeling well again 💕
Hi Sinead, I've been on sulfasalazine and hydroxychloroquine for 3 and half years now and although I had some uncomfortable side effects at first, eventually they settled down. If I remember correctly it took about 3-4 months for the meds to start working but now my RA is under control.
Before that I tried methotrexate injections and then leflunomide, both of which caused me enough problems to have to stop them.
One drug might work for you while it won't work for another, and vice versa. Our bodies are all unique and react to drugs in different ways.
I would advise to give the sulfa a bit longer. The start of the RA journey is horribly frightening and stressful. All of us go through a grieving process for the life we had before. I sought counselling through my gp in my first year of diagnosis and it helped me to start to come to terms with this huge life change and to make room for RA in my life. Still working on that but I'm in a better position with it than I was at the start.
Definitely talk to your consultant about wanting children. And use this group as a sounding board. As for your fear of the meds, it's perfectly normal when this is all new to you. But they will help you if you allow them to. It's just about finding the right one that works with your body.
Yes, the possible side effects are scary sounding, but the key word is 'possible' - and you have to think about living with RA with meds versus living with RA without meds. One should hopefully slow or stop the disease progression in its tracks. One won't.
Best to speak to RA support. When I went on to 2 tablets I also had overwhelming depression like a dark cloud. I do suffer with anxiety/depression and this was totally different.
Hi I am on Sulfa 2x twice daily and was told to take after meals, I was also given the gastro-resistant type which protects your stomach, no problems. Good luck with your R.A. journey.
I remember when I was diagnosed well over 20 years ago it was a lot to take in and I went into a deep depression and was off work for over 6 months. I was terrified and thought I would be an invalid and deformed, as my grandfather had been an invalid with his RA. It sounds a bit like your diagnosis has triggered this kind of reaction with you, it is a lot to take in, but there are so many good things that can help.
I was on sulphasalazine for over 18 years, started on 4 a day and rose to 5 a day. They normally take about 3 months to get into your system, while it’s true that most drugs have side effects, with having RA it’s finding the drug that works for you and being able to cope with your side effects. During the time I was on sulphasalazine I did have some flares, usually worse when stressed.
Your post doesn’t say where you are, but my rheumatology team routinely do a session for newbies so you meet the rheumatology team, including nurse, chemist, physio, podiatry, etc. I found this very useful, and the same thing happened when I moved across the country, even for me as a long timer. You would certainly have your concerns heard and they could advise you about getting pregnant and the drugs.
Unfortunately after 18 years and surviving on sulphasalazine the drug stopped working. My body had grown too used to it. On my journey I have been on 10 different drugs in the last 3 years, but have finally found the one that is working for me (been on it for 8 months and was only the 5th person in my area to be given it) and small side effects I can live with. New drugs thankfully do happen for this rotten disease.
While you can read everyone’s experiences, they will all differ from your own, please never be frightened to try a drug, it might be your miracle. Can I also add over 20 years on, I can still walk, I’m no invalid and my joints are not disjointed.
I think you are still trying to come to terms with your diagnosis. It is a lot to are onboard. Maybe see if you can find a local group in your area to see if you can meet up and get some additional support, and do contact your rheumatology team and tell them your concerns.
Hi hun I am sorry yo hear you don't feel great. I had the same experience and was told to stop. If its making you feel really bad then speak to your consultant again and ask to be switched to something else. Not all the meds work for everyone and its trial and error.. hope you get some relief soon.. 😘
I was on sulphasalazine and managed to get up the the highest dose without seeing any improvement in my symptoms . I came off it in the end as I was getting blood blisters in my mouth … I didn’t know what they were and it scared me a lot. I also experienced low mood … just not wanting to go out and feeling very introverted ( which is not like me). I think you have to take a balanced approach between listening to your body and taking advice from others. I was diagnosed 3 years ago but still not found a treatment that works. I think reluctance to take the drugs causes major delays in finding the right treatment. However, as I feel worse on them than without so far , I’m prepared to take that risk. I hope you find the one that suits you soon. x
I echo what everyone here is saying. However I would add that please remember that it is not just a case of take the tablets/don't take the tablets.
You can also ask your RA team about extending the time before increasing doses. Instead of upping it by one tablet every week, ask if you can stay on each dose a little longer before the increase. This will give your body more time to get used to the extra dose.
I had a similar start with sulfasalazine, but mine was fine until week 4. Itchy legs from toes to hips, insomnia for 4 days with zero sleep, constant nausea, feeling low and not wanting to move. However, I'd prepared for it, and had a house full of nice biscuits and ice cream, took some time off work (I realise that's not an option everyone has) and had my partner and others around me who helped.
I would suggest speak to your RA team, you should have been given a number to call. If they aren't available at weekends, call the NRAS helpline, but most of all I think someone before suggested some therapy or counselling. That's really good advice. If you are in a position to pay to get that sooner, I would recommend it.
It's not easy to get the news of a lifelong condition, I'm guessing after experiencing some symptoms for a while, potentially huge amounts of pain. Then to be told you have something which is referred to as an autoimmune condition, well that's not going to be easy to just accept. Be kind to yourself, and I'm including your mind in that. It's too easy to think that the pills we take should be a magical instant fix. But most here will tell you it's not, and there's no way to get around that I'm afraid. BUT.... they do work, you sometimes just have to find the one for you. Our bodies can trick us into thinking the drugs aren't going to work, but an overreacting immune system, wants to do just that, overreact. It often needs to be gently encouraged to behave 😂.
In terms of immunosuppression, hydroxychloroquine and sulfasalazine are some of the milder of that group of medicines, so if that's what you are concerned about, please be reassured that some small extra precautions should mean that if you take both of those drugs, your life doesn't have to drastically change. I am taking both of those, for the same reasons you are (to be able to conceive) and I know that if you can't tolerate those, there are other options.
However, like any medicine, you have to weigh up the pros and cons, and with the drugs available to us, the pros mostly do outweigh the cons, they just have to have time to work.
Maybe take a little break, do something nice for a few days, try to put yourself in a really good place mentally before trying again. If pain is a factor, ask about some short term steroids, they could give you some relief while you push through the first few weeks of the tablets.
One last piece of advice which I sometime forget, but is more important than most people realise (don't know if it's the same for other tablets).... I cannot overstate enough how important it is to drink LOTS AND LOTS of water with each dose of sulfasalazine. Honestly, if you drink a full glass at each dose, double it. If you drink 2 glasses, double that. You'll be peeing like a racehorse, and it'll be radioactive yellow with sulfasalazine, but it will help!
Please call your team and tell them how you feel. Be gentle with yourself, and if there's something you enjoy indulging in, art, reading, trashy TV, walks in the sunshine, now is the time to make those things a priority while you get yourself into a space to take on the challenges of RA, and smash each one of those challenges💪... it can be done, more easily than we think sometimes!
I really don't have much of an answer for you other than I was on the same drug for a very short time I was quite poorly and doctor took me off them. It takes time for some people to get the drug best suited to them but YOU WILL. There's lots of different drugs done lose heart 💛 xxx
Sorry to say I couldn't tolerate sulfa at all. Lasted 6.5 weeks but really after 1 week it was terrible. Dizzy, brain fog, blurred vision but the worst was total loss of taste which only came back 2 months after I stopped taking it. Thankfully methotrexate hasn't caused any difficulties
Really Sinead we are all different and respond to medication in different ways. We can tell you our experiences but I get the feeling that,in your case, the fear you have, both about the medication and the disease itself, is overwhelming you. As you also want to start a family, you will also be worried about how the disease and medication will affect your prospects. You really could do with talking about your fears with your rheumatologist or ring the NRAS helpline. Before you do, make a list of all your concerns about the disease, side effects of the medication, wanting to start a family etc. When you talk to someone with the experience to help to rationalize everything, I think you will feel better about things hopefully.
I’m on Sulfasalazine difficulties at first but persevered and fine now had to take so many different treatments before found one that suited me hope you get the balance of meds right
I am struggling with sulfasaluzine, too. I felt bloated on one tablet each day so now I am on one every other day. I know that it caused depression with me very quickly, too. I am on leflunimide also and have no side effects from it. It is scary and awful to take these medications but when you find one that works that fear will disappear.
I've been on sulphasazine for 16 years and I've never heard or read it causes depression. You are coming over as an anxious person not that I'm critising this at all. You have the mindset of fearing immune suppressants. Such a shame as they changed my life for good. Perhaps you need to address your fears with a professional as I can't imagine what it must be like living like this. I wish you well
Watch out with the sulfasalazine..i was 2/3 months in and becoming more and more insular which I didn't see..... . fortunately my partner noticed the depression and contacted my gp... I was taken off that and put on a biologic .
I had horrendous reaction to sulfasazine and had to come off after Two weeks as got low felt awful and even talking was difficult. It took me nearly 3 years to get the right drug so now on baritcitnib. Fight your corner.
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