RA and sulfasalazine

[BMCV]

I've been on sulfasalazine for about 6 weeks now and have developed the most awful taste in my mouth, while also now experiencing that all food either has no taste or tastes very acidic. Does anyone know if this is temporary?

[Boxerlady]

I did have a metallic taste in my mouth for a while when I started Sulphasalzine but I didn't find that it affected the taste of food. I suspect that my Methotrexate injection sometimes gives me an odd taste too. I find it more noticeable when my mouth is dry which happens more now so I try to sip fruit tea or squash or suck sugar-free Polos which helps. Interestingly, my dentist said that less saliva production is common with RA and can lead to more teeth and gum problems so he advised sugar-free sweets to encourage more saliva and to be extra vigilant with mouth hygiene which seems to be working according to the hygienist.

[nomoreheels]

Hiya BMCV, welcome. It's been a while since I was on SSZ but I did have a bad & also metallic taste for some time. I also had a dry mouth which my GP prescribed Salivix for. They didn’t help so she prescribed Biòtene gel which did. Maybe ask your GP if he can prescribe or suggest the same or similar.

[BMCV in reply to nomoreheels]

Thankyou and to boxerlady. I've not experienced dry mouth but definitely cannot taste food at all or, even with fruit, it is tasting like acid. Even tea tastes awful. If I thought this would pass soon enough id continue but its bad enough that I'm thinking of just stopping the meds entirely

[Boxerlady in reply to BMCV]

I don't think that I was aware of the dry mouth until the dentist mentioned it. If it affecting you that much I can understand why you'd be tempted to give up on it but obviously you should speak to your rheumy team first.

Hopefully they'll be able to find a replacement medication that suits you better.

[nomoreheels in reply to BMCV]

Please don’t just stop your SSZ yourself, you risk flaring if you don't have an alternative in place. I understand why you'd want to but it's not the best answer. Have you mentioned it to your Rheumy at all?

[BMCV in reply to nomoreheels]

I haven't been able to say to the doctor. He has been unavailable for a while and I think with covid and the hospitals very stretched, I've had the latest appointment deferred by him. But I am going to email him today to see what's best in circumstances where I don't think I can take the SSZ anymore

[nomoreheels in reply to BMCV]

Hopefully he'll suggest options for you & you'll avoid additional unnecessary problems.

[springcross]

Hi BMCV and welcome to the forum. I had exactly the same with SSZ, bad taste which didn't start for a while but when it did, it was all the time and my mouth became very dry too. I did stop taking it eventually as I also had other side effects.

[BMCV in reply to springcross]

Again, thanks to you both for the replies. I've had other side effects too, primarily the nausea, dizziness, headache, muscle cramps, sore ear and throat! But I've been pushing through all of those but this taste thing feels like too much. I'm going to see the pharmacist today (who had warned me this all could happen) and get his thoughts first, as not due to see the consultant again until February but can't sit this out until then.

[springcross in reply to BMCV]

I don't blame you for not wanting to sit this out but it is a shame that is doesn't suit some people as it's a very good treatment for RA, on its own or in combination with other meds. I was also having Methotrexate at the same time as the SSZ and had been on it for a little while but I knew it was the SSZ causing the problem. I hope you get something sorted out. x

[BMCV in reply to springcross]

Thanks, I very much hope so too but know I can't stay on this

[Silverpixie]

I completely lost my sense of taste (which began with a metallic taste). Apparently it is a rare side effect. I had to stop taking it.

[BMCV in reply to Silverpixie]

Thanks to you both. I am waiting to hear from the consultant as I really csnt take the taste and taste-loss anymore so I'm hoping there's an alternative. The headache is also back

[BMCV in reply to Silverpixie]

Can I take it that once you stopped taking the SSZ your sense of taste returned? How long did thst take if so?

[Silverpixie in reply to BMCV]

I'm sorry it was about 9 years ago and I was really poorly and can't remember!

[madme1]

I used to get an awful taste in my mouth, it was literally like something had died in my mouth or my stomach as it appeared to be coming from the back of my throat. It was also metallic, I thought it may have been from Omaperazole as I'd heard not very good things about them but I still take them as a necessity anyway. That was about six or seven years ago and I do remember it was only temporary, lasted a couple of weeks. Try not to worry too much and hope it eases soon. I'm one of those people who when they put the flush in before the infusion, I get an iodine taste in the back of my mouth, but not all people do.

[Lgrattan03]

My partner has been in sulfra since diagnosed with RA last May and had dry mouth or Pear mouth as they call it. Also having to urinate alot. This was on 4 tablets. His rheumy wanted him to try Metho and my partner stopped sulfra for 3 weeks to 'test' how effective it was (on rheumys orders though). His inflammation markers sky rocketed, then he increased his sulfra dose to 6 tabs a day and is still on these. The side affects have lessened alot and in 12 weeks his inflammation markers have dropped from 40 to 25, to 14, and yesterday to 6. 5 is apparently normal and we will see at the next blood test in 2 weeks if they have dropped again. He too thought about stopping sulfra but it has worked out great so far, see how you go over a period of time, at least the full 3 months to see full affects to see if you think it is right for you. My partner and i are both young (mid 30s) and we are hoping to try for children this year hence avoiding metho but everyones circumstances are different and medications all work differently for people.

[BMCV in reply to Lgrattan03]

Thankyou. My markers weren't very high and I was put on the drug as a preventative measure but am definitely struggling with a lot of the side effects but primarily the taste and taste-loss. I hope the consultant will get back to me quickly.

[Hidden]

I don't want to sound alarmist as everyone experiences different things with meds but I had an extreme reaction to this drug - It paralysed my whole body and I had to crawl on hands and knees to the bathroom whilst covered from scalp to my toes in raised red blotches so-just be careful..

[LinaM]

I had to come off it I’m afraid , due to the same thing. Bad taste in my mouth and my teeth all stained yellow and yellow hair ( I think it colour your sweat so if you have white hair it gets stained) The last straw was when I developed such a dry mouth and three blood blisters inside my cheeks in one week. I know these things sound trivial but it wasn’t helping my inflammation anyway so I gave it up.

[BMCV in reply to LinaM]

I wasn't sure if my teeth also seemed to be yellowing, thought it was my imagination but now it seems certain. So I'm very grateful you let me know this. Now I'm totally sure I'm not continuing with it. Did your sense of taste return when you came off it?

[LinaM]

Yes I’m pleased to say it did … though I still have a slightly metallic taste in my mouth three months after stopping .

[BMCV]

Id hate 3 months of this but glad to hear at least a sense of taste returned