Help!! The side effects of Sulfa.

Katiebelle

Hi all,
I'm hoping someone can give me some advice, I was diagnosed with PA back in October, I have been on Sulfa since then and although the first month or so was tough with side effects, since Christmas i have been really well, apart from unsightly bruises that came from simple bumps, i have had no pain or stiffness and quite a lot of energy. Until just over a week a go when i had the mother of all flare ups that put me in bed for 3 days. Luckily i had a rheumy appt last Monday so they were able to see me all swollen up and in the middle of a flare, they gave me a steroid injection but it seems to have done nothing. Over this last weekend, the pain has gone but i am still a little stiff and so exhausted i can barely drag myself out of bed in the mornings and wander around like a zombie all day.
Then to top it all off, yesterday my wisdom tooth started hurting, i have just come back from the dentist who tells me that i have a nasty infection in my gum and that it is most likely to do with my low immune system from the sulfa.
I don't quite no what to do, my initial reaction is to stop taking the sulfa and just carry on with my naproxen for a few months and see how i get on. I'm sick of feeling so tired and of all these hideous bruises that appear out of nowhere. I suppose that had the tooth problem happened before my flare last week then i would have perservered with the sulfa as it would have only been a minor setback but the flare has absolutely knocked me off of my feet, i have not had a flare that bad before and i wonder if it is related to the sulfa or just my body paying me back for being pain free for over 2 months?!
If anyone has any advice or thoughts to help me, i would greatly appreciate it.
Thank you for taking the time to read my post.

Kate xxx

tillytop

Hello Kate

I was so sorry to read your post - you are really having a rough time and I understand completely why you feel like giving up on the Sulf. I also understand exactly what you mean about the "little things" being the things which can tip you over the edge.

I know from my own experience that, when you have inflammatory arthritis it can be really hard to know sometimes what problems are down to the arthritis itself and which are drug related - or whether in fact a particular problem is a combination of both. I also recognise that it can be very hard to see the wood for the trees sometimes and the impulse to give up the meds can be very strong - I think because it maybe feels as if that's the one thing we have control over when things are bad if that makes any kind of sense.

But trying to put my "practical hat" on I think that if I were you, my very first step would be to speak to someone in the rheumatology dept (do your hospital have a rheumatology nurse helpline?) and to tell them exactly what you have posted here because they are the very best people to advise you. Obviously you need to get your wisdom tooth sorted as a priority and they wil be able to tell you whether you need to stop your sulf to allow the infection to clear.

As to the awful tiredness, well that could be related to your ongoing flare and I think they need to know that the steroid injection hasn't really helped you very much. It is good that the hospital saw you mid-flare because arthritis does have a habit of behaving better on hospital days! Have you had blood tests recently? Just asking because I wonder if anyone has considered whether you are anaemic. I don't know if this applies to PA but certainly with RA, anaemia is quite common and can really add to the extreme fatigue.

Unfortunately, as I'm sure you are well aware, with inflammatory arthritis, stopping the meds long term really isn't an option because the joint damage which can be caused by uncontrolled inflammation can't be undone. But it may be that the Sulf is not right for you or that it is simply not enough and needs to be combined with something else to try to bring your PA under better control.

Don't know if any of my ramblings are helpful - but please know that I do understand and that many of us have been where you are now so you are really not on your own with this.

Please do keep us posted.

Thinking of you.

Tillyxxx

amboritic

I got quite severe fatigue with the sulpha, seem to be better with the methotrexate.

dreamdaisy

I began sulph ten years ago and bruised like a good 'un initially, and still do bruise at the drop of a hat but I don't take much notice now. It did nothing for my PsA in terms of helping the joints (and still doesn't) but it does keep the P bit at bay. I am now fifteen years into this and my sulph has had various companions added to it over the years, and I suspect this now may be the case for you: woman cannot be helped by sulph and nap alone (as you seem to be proving) and I suspect that your rheumatologist will now discuss adding another med to help the mix. As for the wisdom tooth I have no ideas about that but you must not suddenly stop the sulph, no, no, no. I know it's tempting but it is not a plan! Like Tillytop I hope you can talk to your rheumatology nurse soon and I wish you well. DD

phoenixoxo

Hi Kate,

Sorry you’re having such a rough time.

There's already some great advice and support on this thread, so all I can do is echo Tilly's comment about speaking with someone from your rheumatology department. When I began immunosuppressant meds, the specialist nurse told me that I should report any infection to her via the helpline. If she isn’t available, I contact my rheumatologist's secretary and ask to speak to him asap.

As for the Sulf, this was the first DMARD I tried, about seven years ago. Even at a very low dose it gave me chronic diarrhoea, so I had to come off it after just a couple of months. It may be that you'll need a medication review, but perhaps the first thing to do is sort out the infection as that'll be one less thing on your mind.

Wishing you the best,
Phoebe

suzygirl

Hi, you have been given excellent advice already. Contact the rheumy dept for advice on meds as you have the infection. Unfortunately the arthritis does affect the immune system and makes us more prone to infections. It can be quite miserable to live with at times, but the meds make it bearable and then we bounce back.

Rest up and take it easy to give your body chance to fight its battles. Then you can reassess the med situation, hang in there, it does get better.

sulkycat

Sorry to hear you are having a bad time.
I came off Sulpha after being really ill with it - like a severe bout of flu, could hardly stand etc and totally wiped out / shaky.

I checked with my Dr and the RA nurse, both said stop taking it straight away - I would certainly advise ringing your hospital and getting their opinion asap.

As for the tooth, that's no fun - I had lots of jaw pain etc with the Sulpha too which was weird!
If you do have to have the tooth out it's nowhere near as bad as some of the horror stories people tell, had mine out the other year - loads of rest and antibiotics at the first sign of any problem.

Good luck!

Mat48

Hi - I tried Sulf last year - my first DMARD and it made me feel horrible especially when my dose was doubled to 20mgs. I had swellings on my neck, tiredness and nausea plus ended up with an all over incredibly itchy rash which then made me photolightsenstitive even with sunscreen.

I came off it after a month and felt instantly better although the RA symptoms did return after a week or so but I then had a Kenalog injection to tide me over for a while. Now on Methotrexate (MTX) and am finding no side effects at all apart from incredible tiredness but think that's the aftermath from a flare 3 weeks ago. I think everyone here has suggested that you contact your rheumy team asap and explain about the wisdom tooth. You may have to come off the sulfa anyway if you go on antibiotics so they need to know. There are other DMARDs out there which may be better for you if you haven't already tried them. If you can't get through to your rheumy team you could just go to your GP - that's what I have to do for everything concerning my RA etc and they might be the best option anyway as can speak to your consultant on your behalf also. Mat x

ruby2

Hi
I recently had a nasty UTI and felt very poorly on the ABs.
I felt it was reacting with the sulfa and stopped taking them ( not recommended without advice).

I tolerated them much better without sulfa, when I mentioned the reaction to the GP he checked up and said the Abs were not contraindicated with sulfa. So I am very interested in Mats post commenting we are supposed to inform if we take ABs or have an infection, thank you for that information Mat, I was never told this.

Following discussion with the GP he said to stay off them until I see Rheumy (21st March)

I have taken them for years.

But have to say I feel like I have taken a lead overcoat off!!!
Just going up then stairs I feel 20 years younger!

That is just my experience though.
Will let you know what the rheumy says.

A very informative discussion.

Mat48

That's really interesting Ruby. I haven't taken abs for years but I know from other RAers that abs and DMARDs can be a problem although I think it depends which ones. But they obviously clashed with you whatever the GP says? I hated that Sulpha and felt wonderful for a while when I came off it. My GP made me come off it because of the weird swellings on my neck and the horrible all over rash though. Don't feel same way about the MTX and apart from one brief spell of raised liver function I've been fine on it. I am now up to 15mgs and see the rheumy end of this month so hoping me may let me go up a bit more. My only worry is that my RA gets used to it and then finds ways around it but I do loads of exercise and am very careful what I eat so hoping that all these things hold the weed off forever! My fingers are the only part of me that are still a bit dicky and have become misshapen since the last flare.

Interestingly I did read somewhere (one of these whacky cure type features) that there is a form of treatment for inflam arthers that is based on antibiotics so wonder if they maybe helped yours? Can't remember what it was called but it was hailed as an alternative treatment and antibiotics are supposed to be much safer than the DMARDs or Biologics?

I have a very high pain threshold but am pathetic when it comes to feeling nausea or itchy. I had chronic eczema for most of my life and that has now disappeared completely so I don't feel the RA is any worse than cracked and seeping open sores and horrible purple itchy stains all over my face - in fact I'm feeling really good just now. Lucky me hey? Mat xx

Katiebelle

Thank you all for your kind words of support and advice. After I posted I called my rheumy, spoke to the receptionist who said I couldn't just make an appt and that I had to be referred by my GP. As I was quite upset I just accepted this and didn't really think about what she had said until after I had hung up, I distinctly remember being told at my first appt nearly 2 years ago that I could call and talk to them any time I had a problem. I think she is wrong as I'm already under that dept, surely they are supposed to be looking after me especially as it was my rheumy that put me on the sulfa in the first place?? Anyway, I called my GP's and asked if one of the nurse practitioners could call me back. She did and I pretty much sobbed down the phone at the poor woman!! I have a full blood test in the morning with her and then an appt with my GP on Thursday afternoon. She was so lovely and has said they will sort everything out and not to worry so I am feeling a little better despite bursting into tears every hour for most of the day. My boss, who is fabulous, insisted I take 2 weeks off but we came to the agreement that I would just take the rest of this week off as sometimes I am much better at work than moping around the house feeling sorry for myself!! I have also managed to take 3 doses of the metronidazole for my tooth as well so hopefully tomorrow will be a bit better!
Once again, thank you for replying and helping to shift the incredible 'alone' feeling I had earlier.

Kate xxx

Mat48

That's great news Kate. Do you not go and see your GP or practice nurse for blood tests regularly? I go every two weeks for MTX tests and they always ask to be informed if I flare up. I've never had a big flare up apart from 3 weeks ago when my wrist felt like it was being tortured all night - when I woke after an hour's sleep my hubby was staring horrified at my hands which were twice their normal size - knuckles raised like mini mountains and my fingers have now drifted a little. But since then I've been almost completely pain free so it will be a horrible shock to flare up suddenly - I feel for you.

I don't think you need to weather the Sulpha if it isn't suiting you and is giving you these bruises and you've recently had a nasty flare. I certainly don't see why the rheumy or a rheumy nurse wouldn't advise you on what to do about all this - that's terrible! Mind you I was never even given my rheumy's number or told how to contact them apart from through my GP.

But really glad you are going to see the nurse and your GP this week. You won't want anything suppressing your immune system if you do have the wisdom tooth out. I had all four out many moons ago and was left with gaping holes in my mouth and went on to catch every bug under the sun for months! Good luck hope it all gets sorted out soon too. Mat x

amboritic

Hi Mat,

Just thought I would point out that thw GP would have only checked BNF to see if there was a specific contraindication.

As we all know drug reactions can be a very individual thing.

I was asked last week if taking co-dydramol and tramadol makes me tired, my GP was surprised when I said the exact opposite, particularly tramadol as it gives me insomnia if taken too close to bedtime, go figure.

Mat48

That's interesting Amboritic - I've got Tramadol
In my ammunition if I flare and my GP wasn't keen on it - she said many patients didnt like it and always asks me if I've tried it yet but I haven't needed it in past month since I've had it and certainly don't want insomnia!

Re GP - just wanted to point out that if the rheumy team isn't being helpful re Sulpha the GP is always an option. In my case it's the only option I'm offered because I don't have contact number for my rheumy who is a visiting consultant here. I agree that drug combinations cause things other than what GPs have listed. The Sulpha made me depressed and yet this is listed as a very rare side effect on the contraindications sheet! Mat x