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What's next for me?

Hello.

I have a seronegative inflammatory arthritis and I'm in my 30s. I was initially put on hydroxychloroquine and it made a huge difference for me at first. Last year, after about a year on it, I had a worsening of joint symptoms during a time of acute stress and was put on sulfasalazine and the HCQ was reduced. I was told I might have psoriatic arthritis (I don't have any skin psoriasis but I do have mild nail pitting).

I had really horrible side effects from the sulfasalazine at first but they settled down. I also had a rash but it only lasted 48 hours.

After a few months on the sulfasalazine I can't say I've noticed much improvement. I also think my mood has been very low and I'm concerned that the drug is to blame.

I had POTS in the past but it resolved last year. Now it's returned. I also have some digital ulcers and raynaud's-type symptoms.

I was really pinning my hopes on the sulfasalazine but it's done nothing really. If anything I feel worse.

I have given it more than 3 months now and I'm prepared to quit. I see my consultant soon and I just don't know what the next step is. Methotrexate has been mentioned but the thought of working full-time with those side effects terrifies me.

Plus, I don't really know what is wrong. I have obvious joint problems. I'm pretty sure it's not RA, and I can see why they think it's PsA. But I don't have psoriasis and hydroxychloroquine shouldn't have helped so much for PsA should it? And there are other unexplained symptoms that point more towards something else. And I used to get nasal ulcers which have disappeared since being on hydroxychloroquine. But my ANA test was negative when I had it 3 years ago.

I don't know where to turn next, what to ask the doctor, what to expect. I just want my old body back. I need to make the most of my upcoming appointment so really any thoughts would be welcome. X

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Hi I'm 40 and I have rumotiod arthritis on hydro and was on Mexico but had side affects and then had lufudimid drug witch help a bit in now going on a tnf drug awaiting appointment you need to be firm with your doctor and you need to ask them to refer u to the pain clinic push them and tell them what you want as they are there for you and only you can low how u feel tell them what you want love and get the care u need and deserve keep us posted

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Write down all of your questions and concerns before you go. Also take someone with you. You could keep a diary of all of your symptoms (and how they are affecting your ability to work) in the run up to your appointment so you can give them some evidence. You can have PsA without the rash. Methotrexate can be very good for some people and you may not have any side effects from it. I hope this helps. 🙂

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Hi , sorry to hear you’re not having any improvement with the medications you’ve tried. I’m seronegative too and poss PSA though the Rheumy says maybe not. He says you can have psoriasis and RA without it being PSA. I’m on Mxt and it’s been moderately successful. I’m now doing the tests for a biologic which I understand is better than Mxt if it’s PSA. We’ll see what happens.

Don’t be afraid about trying Mxt . It’s a great drug for most people and any side effects usually settle down quickly. Best wishes

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Hi, sorry to hear you are in pain and worried. I am also in my (albeit very late) 30s. I was diagnosed 10 years ago. The fact that you responded so well to hydroxychloroquine seems very positive to me. It's a shame sulphasalazine hasn't worked for you but there are a couple of other DMARDs your doctor might suggest you try - methotrexate as you mention (some people get side effects from this, but many don't) and also leflunomide. The Reynaud's might be a side effect from sulphasalazine - I got it as a side effect when I was taking it.

As to your diagnosis, it's probably best to discuss with your doctor. I'm not sure if other people here would agree, but from my experience it seems that the rheumatologists are more interested in treating symptoms than specific diagnosis. I was originally diagnosed with seronegative inflammatory arthritis, but when I asked if the antibodies could be retested after a couple of years the doctor said there was no point as it wouldn't affect my treatment, and I now get RA written in my notes.

It's horrible when you're feeling unwell and uncertain what will happen in the future, but most people do find drugs that work for them and get back to 'normal'. This site is a good source of support. Good luck, I hope you feel better soon xx

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Hiya whaleroad, welcome. I was diagnosed seropositive in 2008 & also started treatment on hydroxychloroquine (plus steroids & 2 NSAIDs) & like you it became less effective at around a year but I then started methotrexate. 8 years later I'm still on MTX, as you may gather it's been a very good med but disease activity in my feet is my continual issue. As I can't go higher than 17.5mg injections I needed another DMARD to help (this is called double therapy, 3 DMARDs triple therapy). The first was sulfasalazine, again like you it didn't do an awful lot for the disease, gave me terrible nause & sickness &, spookily (!) it did make me very low. I stated my case, it was stopped & leflunomide added. This didn't help either & I also started having neurological issues, confirmed by 2 separate nerve conduction studies so that was stopped too. I remain on MTX plus steroids which were being tapered prior to starting LEF.

Anyway, to make sure your allocated time is well used prepare for your appointment, write bulletpoint notes, list questions, take photos if it helps having evidence of anything that comes & goes. If you're not convinced of your diagnosis ask what else apart from your nails leads your Rheumy to it. List your concerns about SSZ, list symptoms & explain how low it's making you feel & how often. If it's that MTX was discussed previously that makes you think it may be recommended next maybe a read of this to help you make an informed decision would prove helpful creakyjoints.org/treatment/... It's always helpful if someone can accompany you to your appointments. So much is discussed in relatively little time it can all seem a blur particularly until you get used to terms, medications & such. My h does, has every one & we discuss what went on as soon as we leave so nothing's missed.

Whichever DMARD is recommended I hope it's the one that helps with least issues. It might be an idea to ask if there's something you could be prescribed to ease your pain or inflammation until the DMARD becomes effective, you probably know by now none of them are fast acting so anything to help, even a steroid injection, will make things more comfortable.

Good luck & let us know how you get on.

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Thank you so much. Methotrexate was mentioned as an alternative at my last check-up but it seems they wanted to try the sulfasalazine first.

I was having a bit of a flare, but I'd just had a major bereavement which I'm sure was the trigger. Having said that, things do seem to just be getting worse generally.

I think I will ask about trying steroids again. Naproxen doesn't work for me anymore.

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Hi and welcome to this place - I hope you find it as supportive and helpful as I have. It’s helped me so much.

RA is a pain (in many ways) and in the five years I’ve been diagnosed I have learned a number of things - nothing ever happens very fast, it can take months to try out a new drug or combination; no two people are the same, what works for one doesn’t work for another; it’s very much trial and error (hopefully no errors really) to find what works for you; there are some scary meds, but these can be your friends. Methotrexate has given me back some normality and a good life; what works for a while may change and you may need to adjust amounts or drugs.

My advice is ask lots of questions, be patient, keep a note of symptoms, keep an open mind and most importantly we are all here to share the journey x

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Hi , I was on sulfasalazine for 2 Years after being diagnosed with psoriatic arthritis. It worked wonders for most of that time , and then just had no effect anymore. My rheumy took me off them and I gave in an tried the methotrexate tablets. One thing I will say is it was like a dark cloud was lifted as soon as I stopped sulfasalazine. It definitely affects your mood and makes you feel very down. I would ask for the methotrexate injections, they are expensive but at least you will avoid the nausea and horrible ibs symptoms you get with the tablets. I am on them only one month so can’t say if they are going to work for me. I’m currently waiting on a bone scan and then the rheumy might put me on a biologic drug like humira. My advise is learn what you can about the illness, the treatments. And you have to fight for what you want. Knowledge is power!!! If your in a lot of pain ask for a steroid injection, they are magic 😊.Good luck with your journey, and hopefully we both find something that works 🤞🏻

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Steroids are not magic, they can be a nightmare. They bring instant relief, but in the long term they can cause Osteoporosis which is where the nightmares begin.And be aware that seronegative can change to seropositive, which opens up the opportunities for different drugs.

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Hi whalerroad

Steroids are not something you want to see as a treatment especially as you are this far down the road with your first DMARDS.

I personally would only expect to be given them for a majorly debilitating flare , one that had you incapacitated and then only for the minimal length of time.

You only have to read some people's stories here regards oral steroids, my own included.

Steroid injections are a different matter completely of course.

I understand and have huge empathy for what you are going through and you sound such a sensible intelligent girl.

I agree with your consultant reticence to put you on Mthx if there is a chance you would like to get pregnant. However if this is something that isn't in your current plans then try not to be too scared as it is the gold standard of treatment and many people have no issues with it.

I'm similar to you in that I'm seronegative also , ( this can change over time) I ignored finger pain for a few years then had a massive explosive onset in multiple joints which caused 11 months off work, I got steroid induced Diabetes but wouldn't have been able to walk, wash or wipe my own bum without them. I couldn't shut my mouth for weeks as the inflammation in my jaw and the base of my skull was off the scale. I think someone described it on here at the time as if overnight someone had crept in to your room while you were sleeping, tied plastic bags around your hands and then smashed your hands with a hammer and the only thing holding them together was your skin. Utterly grim in every way.

I failed on Mthx, Sulfa (allergic) and Leflunomide as my liver couldn't tolerate them so have been on Hydroxychloroquine and the Biologic Etanercept for two years now. I'm back working in a very physical job and yes I still suffer pain but there is no comparison as to how I was in 2015.

They say it might be PSA but more likely RA I have both diagnosis on my notes. I don't have skin symptoms but my Mum does.

Good luck to you and if you explain yourself at your coming appointment as well as you have done on here then I know that your Consultant will try another combination. I wish there was an easy fix but the early years after diagnosis are so so important given your age especially as halting the progression and minimising joint damage is paramount.

Finally I re iterate, be wary of steroids.

All the best

Mx

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Hi whaleroad, I take 15mg of methotrexate every week also all of the meds you said you take were of no use until I started injecting with enbrel. However still suffer with my feet.

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Like others I would advice you not to think of steroids as a long term solution especially as may effect fertility in long term - but do ask for them as a short term boost if they agree with you.

Generally you have to have tried and failed on at least a couple of conventional DMARDs including Methotrexate before being eligible for biologics. And also have a fairly active disease.

However I don't know whether there would be exceptions for people who wish to become pregnant (I think of the biologic drugs anti-TNFs are ok re pregnancy). You could ask your rheumy whether there is a way to go straight to them?

But MTX is not all bad. I've been on it for 7 years no with no side effects and have been in remission mostly for last 5 of them...so it's a good friend to me.

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Hi there, you poor thing - sounds like you've been through the mill. I was diagnosed with Psoriatic arthritis last summer and I've never had the skin condition. I know how you feel in terms of symptoms not seeming to add up. It can be so overwhelming and confusing if the symptoms don't seem to fit into a particular box but everyone is affected in so many different ways with symptoms so I've come to realise this rheumatology malarkey isn't black & White at all and it just takes time to see how things affect you as an individual. It can be so infuriating. I was put on methotrexate straight away, I was up like a balloon it is was horrendous but now I'm so much better. Please don't add to your stress worrying about methotrexate if it's scare stories that are concerning you. It sounds like it's worth a shot but understandable to be worried if you've had bad experiences with medication in the past. Something I've come to realise is that many things can contribute to the affect of a drug on your symptoms - like stress and how well you're sleeping etc. It's so difficult not being able to plan ahead when there's uncertainty with how medication will work but don't hesitate to ask lots of questions to your doctors and wishing you lots of luck. x

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Hi. It is very frustrating without a definite diagnosis. Mine is undifferentiated inflammatory polyarthritis. Hydroxychloroquine was a miracle for me too. It made me itch until I couldn't stand it. I stopped after 4 months. Sulphasalazine made my head feel like it was going to explode and I felt quite sick. It lasted 3 weeks. Now I've had Methotrexate for a month and am tapering down prednisone which is not working. 20mg of Prednisone was life changing for me. It was nice to have a break from my body for a while.

When meds don't work it feels you have to start all over again. Back to square one. It is such an investment of time when trying out a new drug. It sucks that some of them can take months to work!

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The itching was so bad especially after a shower. It felt like I'd been bitten by a 1000 mosquitos. I was scared to shower and afterward was so distressing. It was insane!

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Anti histamines, hydrocortisone cream and applying fatty cream in the shower before drying. Nothing worked. 😐

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