MTX/Sulphasalazine, heart burn and weird sensory side... - NRAS

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MTX/Sulphasalazine, heart burn and weird sensory side effects.

Gottarelax profile image
19 Replies

Until recently I was taking MTX with Naproxen. I took lansoprazole with the naproxen as directed. In December I was given a course of steroids and came off naproxen/lansoprazole. I had acid reflux and assumed it was in part due to eating too much Christmas chocolate. Once I came off the steroids I went back on Naproxen with lansoprazole of course the acid reflux stopped. In Feb I got another course of steroids and came off the Naproxen but added sulphazalasine to the mix. Now I'm feeling much more indigestion, heart burn, nausea. I wonder whether I should take lansoprazole or contact the nurse first (they are quite slow to get back to me).

I'm also having other strange symptoms now. My eyes are getting sore, my sense of smell and taste also seem affected. Seems like I smell and taste bitter chemicals. All of those symptoms together make me think that there is something noxious in the air but no one else senses it so I think it's just me. Is this a known side effect of any of the drugs?

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Gottarelax profile image
Gottarelax
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19 Replies
Lolabridge profile image
Lolabridge

I always take a PPI (Omeprazole in my case) when I’m on Prednisolone as I get acid reflux otherwise.

Both Sulfasalazine and MTX were stopped by my Rheumy because they caused me problems. I suggest you let your Rheumy know about the effects you’re experiencing.

Gottarelax profile image
Gottarelax in reply toLolabridge

I have a follow up appointment in a couple of weeks so will see what she has to say. Now that I'm coming down on my pred dose I am getting the RA symptoms back anyway so not feeling confident about the drugs I'm on.

Deeb1764 profile image
Deeb1764

I take Omeprazole as without it I got a lot of acid reflux and nausea.

In regards to taste and smell these have changed dramatically and I know on other threads many have said they have had this as well. Might not be something your consultant agrees with but we are noting it does!!!

Again eyes another part of the body that can be affected or Sojerns I had super dry mouth and eyes and consultant called it Sicca but not sojerns

It’s the many add ins and friends of RA

Gottarelax profile image
Gottarelax in reply toDeeb1764

it’s hard to know what’s RA, what’s side effect and what’s just something unrelated. The smell thing is quite annoying though as it’s pretty foul. Fortunately my family would be very vocal if there really was this awful smell so I know it’s not really there.

Everytime I go to the hospital, I seem to say “I don’t know if it’s connected but….”

Deeb1764 profile image
Deeb1764 in reply toGottarelax

and the problem with the I don’t know if it’s connected is half the time they don’t either😂

NikkiNix1 profile image
NikkiNix1

Sulfasalazine gave me nausea, vomiting, blood in stools, cramps and internal bleeding, causing gastritis. I had to stop taking it. Please check it with your specialist

Gottarelax profile image
Gottarelax in reply toNikkiNix1

That sounds awful NikkiNix1. So far it's not that bad but I will check when I see the nurse in a couple of weeks.

Jackie1947 profile image
Jackie1947

Have you tested yourself for covid?

Gottarelax profile image
Gottarelax in reply toJackie1947

I very much doubt that I have COVID as I've been a hermit these last weeks. But that thought did cross my mind so may be worth a check I guess.

Ravey profile image
Ravey

Good morning my love..rotten isnt it..the whole bloody experience. Weirdly I have experienced sensory problems as well..I'm on some of the meds you mentioned or I have been in the past. Just seem to rattle with pills of one sort or another. I experience real spacey heads to the point it affects my balance..had a brain scan had my ears tested..nothing.I also smell smoke..like cigarette smoke to the point it chokes me ..when it first started I had my son up in the loft looking for fire or wiring problems. I have mentioned to consultant..rheumatologist nurse..doctor..not really interested. I wonder if the conditions along with the constant medication and the never ending new pills messes with the senses..I hope it settles for you..such a crazy affliction it's hard to explain it to anyone really..there are so many layers to the illness it seems. Sending hugs x

Gottarelax profile image
Gottarelax in reply toRavey

That sound so similar Ravey. It's like what smells there are get heightened too. I'm constantly sniffing the air to recognize odd smells like it's my new superpower...I would rather it improve my hearing or eyesight!

Garnacha profile image
Garnacha

I'm on etoricoxib, hydroxychloroquine, lefluminode, sulfasalazine & gabapentin, I was previously on methotrexate too & take lansoprazole every day even when on prednisolone

Gottarelax profile image
Gottarelax in reply toGarnacha

Wow, that's a lot of different drugs - I hope that I don't have to take that many! I hope that you have found a combination that works well for you. Looks like it won't hurt to take the lansoprazole that I have.

Garnacha profile image
Garnacha

🤣 didn't include cyclazine or vitamin d & calcium ones 😂 nope not quite working yet, now have carpal tunnel & cubitol tunnel in my arms & hands & a neuroma in my foot 🙄 keep going though 😀 & fingers crossed you don't have to take so many 🤞 x

Gottarelax profile image
Gottarelax in reply toGarnacha

I hope that they find a combination that really works for you!

cakenomore profile image
cakenomore

Hi there, I was put on lansoprazole as soon as I went on MXT. My doctor told me that it could cause acid and heart burn, then when I've had steroids or naproxen she always checks I'm on a PPI. I can't tolerate lansoprazole now, so I'm on H2 blocker famotidine which suits me. As for the taste and smell....I thought I was going mad. My sense of smell always heightens for 3 days after mxt. Some smells are so strong they make me feel sick. I can't stand perfume or any strong smells and everything tastes like bitter burnt coffee grounds . I did wonder if it was side effects. When I've had to stop mxt it all settles down!! I've tried eating ginger and smelling peppermint, it takes it off a bit. Now I have one cup of caffeinated drink a day for 3 days after mxt and that has worked wonders ( told by Rhmy specialist to do this). I would definitely talk to your nurse. I hope you can find a solution that helps.

Gottarelax profile image
Gottarelax in reply tocakenomore

So maybe I'm not going mad after all! I also had to cut down on coffee. I guess if the meds work I'll just have to learn to live with the smells and tastes. If I can take lansoprazole, at least the heartburn and nausea will be better. Still waiting to feel better when off steroids though.

Bethany02 profile image
Bethany02

Can I take other medication with sulfasalazine? If you have indigestion and need to take antacid (an indigestion remedy), you should take it at a different time of day to the sulfasalazine. As sulfasalazine takes some time to start working, you may need to continue with your regular painkillers.So maybe a good idea to take the lansoprazole first thing then take sulphazalazine two hours later. I'm on both sulpha and Benepali and doing well.

Gottarelax profile image
Gottarelax in reply toBethany02

thanks Bethany that’s useful info

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