Early RA treatment with just Sulphasalazine? - NRAS

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Early RA treatment with just Sulphasalazine?

Appletree2 profile image
8 Replies

Hi

I'm a 24-year-old man and I was diagnosed with RA after eight months of wrist pain without major inflammation when all off my PIP joints inflamed.

My doctor gave me Sulphasalazine and 4 mg steroids daily. After doing some research I'm not really sure if monotherapy is the best option in my case. If I'm right the next some months will have a great affect on the rest of my life so I really don't want it to be messed up.

Some data: I'm 60 kg, have normal RF (3.8), positive MCV (115, cutoff 20).

Any advice is greatly appreciated.

Great community by the way. :-)

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8 Replies
helixhelix profile image
helixhelix

It's probably a rock/hard place decision between giving you more strong drugs than you need, but enough to control your RA. I guess your Rheumy will have thought about a whole host of things before deciding on this course of treatment, including your age. By starting on a single drug you really get to see which drug does what, and with good monitoring this shouldn't be bad for you long term as another can be added in if Sulpha doesn't prove effective alone. You don't say how long you've been on it, or whether the plan is to reduce the steroids over time. But if it's been more than a few months & you aren't feeling benefits then start nagging for an appointment!

You're right that you want to get this controlled before any joint damage occurs - but also remember that you may have to take drugs for rather a long time, so it's also good for the rest of you to minimise the amount as much as possible. And at your age (and weight - wish I was 60kg!) the doc probably doesn't want to blast you with MTX.

So I wouldn't fret right now, but do what you're doing which is ask questions and keep on top of your treatment.

Polly

Hi Appletree 2 - welcome to HU but sorry you've been diagnosed with RA of course. I have had a lot of wrist pain with no swelling and just my PIP joints inflamed so know exactly what you mean. Now it is in my ankle and feet too and my elbow but the wrists were the worst for ages.

I'm a lot older than you (49 - twice your age!) and have had to fight to get onto a combination of therapies - I start on Plaquenil next week after an eye test but have been on Methotrexate for nearly 6 months now and it has made a lot of difference but not enough to halt the disease activity yet I'm sorry to say. Others on here are just taking Sulphasalazine to good effect but if you're well monitored then if it's not enough I'm sure your RA doctor will tell you and put you on something else or add another DMARD in on top. They all have side effects so it's probably quite good not to be on more than one to begin with unless the disease is very aggressive and out of control so you can hardly function.

I know we are told that it's important to treat the disease as harshly as possible early on but it's a balancing act because these drugs are heavy duty and if it's possible to control the RA with one imunosupressant (sp sorry!) then that could be enough for you. You have to trust your RA doctor as he or she is experienced and probably knows what is best for you at this stage and I really hope it works for you on it's own. TTx

Appletree2 profile image
Appletree2

I just started Sulphasalazine and steroid dosage will be lowered after a month if everything goes fine.

I'm quite confused if my lower age suggests more or less aggressive treatment. I remember some source suggested more aggressive but I see what you say.

I'm also not too sure what you are calling aggressive or hardly functioning. I can't use the keyboard or knife. My hands aren't hurting if they are resting perfectly just if I use them a bit. Was it the same for you Tilda?

I have one more question: I have read a lot of people having side-effects. Is this as common it seems or is there a bunch of people out there who are happy with their drugs for decades?

helixhelix profile image
helixhelix

I can't remember the exact proportions but about 20% of people respond really well to the drugs and/or have a mild form of RA so once treated have few further problems and manage with minimal drug intake. And at the other end of the spectrum about 5% of people have a very aggressive RA that is very difficult to control and really struggle with the drugs. The rest of us are somewhere in between - although with the majority having no or few side effects & being able to get into a medically controlled remission with flares now & then but generally ok. I guess this forum is more representative of the gloomy end of the spectrum, so do stay positive as chances are you'll do really well once drugs have kicked in and will last on them for years. I remember one person telling me she'd been on MTX for 17 years I think with no problems.

Tho' not medically skilled, I belive what I read that in medical literature that it's best to treat RA aggressively from the start. I guess what I meant is that maybe the patient's age could affect how the docs define agressive treatment, eg as discussed in recent post those of us beyond reproductive age don't have same issues with taking Methotrexate.

bpeal1 profile image
bpeal1

There seems to be a difference in opinion depending on where you live. Scotland tend to start off with a triple combination therapy and then step down. England (and I think Wales) use a step up approach.

I think I prefer the step up approach. Firstly if you do get a reaction to a drug you know which one. Secondly you are not taking more of these toxic drugs than you need to.

I have been taking sulphasalazine for 4 years and leflunomide for a year with no side effects but had bad reactions to hydroxychloroquine and methotrexate. We are all different and I am afraid it is trial and error until you get the right combination for you.

Becky

cathie profile image
cathie

Just to send you moral support ... Get as much information as you can, maybe a friend to go with you to consultants appointments to take notes, have point of contact between you and them. I think it's best to be informed and proactive. What Becky says is spot on

Xx cathie

Sorry, just to throw a spanner in!!

I was treated with combination therapy (scotland) with methetrexate, sulphasalasine and hydrox all at once; very little side effects, although none of these worked for me it meant that I was then offered an anti-tnf almost 6 months to the day of diagnosis and disease under control within 6 weeks of that....

Luckily, before any permanent damage.

If I was on the step up method I'd still be on my 2nd or 3rd dmard, in pain and without mobility, without my Job and someone else having to look after my baby...

mmmm, sorry, I really do wish the meds work for you...

as Cathy says, it best to be informed and proactive!

We are reading more and more all the time that aggressive therapy is the way to go, to stop the progression of this disease before it causes permanent and very painful damage. This may include using the Biologics much earlier than is being done.

Hopefully, with this form of treatment, youngsters like you could even possibly face a lifetime of being totally unaffected by RA. This doesn't promise a cure, as in eradicating the disease, but as long as meds are taken, you could have a rich and full life, free of arthritic pain and its complications.

Thus, worth pushing for the more aggressive treatment now, and you may have to push your Rheumy for this. It's your body, your life, so you have to be in charge. All the best of luck to you. Keep us informed. Loretxx

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