Sulfasalazine Side Effects & Oral Steroids - OK long term?

Anna76

Hi

I am 34 year old lady and have suffered with RA since I was a baby. I have been on oral steroids for 2 years (in the hope to get pregnant) but due to a recent flare up, I have started taking Sulfazalazine and have, to be honest been feeling really grotty - feeling sick, dizzy, depressed, hard to focus on anything. Has anyone else out there had these problems??? I'd love to know! Oral steroids were working great for 2 years at 7.5mg until now and I am worried about taking the steroids for another couple of years as am often told 'not to be on them too long'.

Would love to chat to anyone with similar experiences.

:-)

tillytop

Hello Anna and welcome to the forum!

Sorry you are struggling at the moment, and that you have been living with arthritis for such a long time. Just wondered how long you have been taking the sulfa? The reason I ask is because I know I struggled with it hugely at first (shocking headaches and nausea) and I have seen others on the forum say the same thing. For me, it all settled down once I got used to the full dose and I took it for many years after that with no probs at all.

Re the steroids, I know that the docs don't like people to stay on them long term but my GP told me that the side-effects are less likely below 10mg daily. I think the usual "maintenance" dose is considered to be 5 or 7.5 mg daily and my understanding is that, at these lowish doses, the docs don't have such a concern. It may be that if the sulfa does its stuff, you can reduce the oral steroids but, as I am sure you know, sulfa can take a good while to start working so patience is needed.

Don't know if any of this is helpful Anna, but I am sure others will be along with replies soon.

Love Tilly xxx

Anna76

Hi Tilly

Thanks for your message. I've been taking Sulfa for a month and have been off work due to the bad headaches and nausea. I've dropped down from the full dose of 4 tablets a day to 2 tablets a day due to the symptoms and my blood test showed by 'white cells' are low. I'm still feeling sick, tired and off my food so am thinking of just going back to the steriods. I tried the Sulfa back in 1999 and it didn't agree with me so maybe it's just not for me.

Your message has made me feel a bit less anxious! Thank you x

tillytop

Hello again Anna

Sulfa was the first DMARD I tried, many years ago now, and I so nearly gave up cos of the nausea and headaches. But, as I say, they did go completely after I had been on the full dose for a bit. But, it may be that it just doesn't agree with you. Has the consultant talked to you about any alternatives? I know you can't take mtx if you are trying for a baby but I wonder if there are alternatives to the sulfa?

I do understand your concerns about the oral steroids tho'. I have been taking between 9 and 30 mg daily for the past year and, although they help hugely, I do worry about the potential for longer term side-effects.

Love Tilly xxx

dreamdaisy

I cannot really help as I have been on the maximum dose of sulph for PA for years and have no side effects at all (apart from tinnitus but as that doesn't hurt I can cope with it). When I began the sulph in 2002 I bruised very heavily for a while but that was it.

As for the steroids well, yes, they help, but the long-term cost of them is not good, so I am devoting this year to getting off them. They work because they thin tissue, hence the easing of inflammation etc, but they thin ALL tissue, not just the inflamed ones. I also inhale a fair few as I have asthma (not such a problem since my immune system was de-activated by the drugs for the arthritis) so I am very concious of the long-term harm that steroids can do to one. They are an effective medicine but not a good medicine. Typical, isn't it? :roll: I wish you well. DD

suzygirl

Hi, and welcome!!! I am 39 and have been on steroids this time, for 3 years now. Have added sulfa into the mix 3 months ago, and am doing ok. I did have headaches to begin with, but it has settled.

I do worry about the long term effects of steroids, but due to other problems, they are my only option at the moment. They enable to move, so I musn't grumble, although I do.

It must be difficult if you want to try for a baby to find suitable meds. I know others have been in similar situations, and I am sure they will be along to offer advice.

I wish you well, sorry I can't be of more help!