NEW TO FORUM - NEED SOME ADVICE

shiningstar

Hi Everyone,
Am new to forum but have been following posts for last few weeks since I found this site, would like to say Hi to you all and join in ...if thats OK.

Have got some really useful tips from you all but would like to know if anyone else is taking Sulfasalazine and if so has anyone else had a horrid metallic taste in mouth with a kind of sore tongue...doesn't look sore but is really uncomfortable. Also read somewhere, brains a bit foggy so not sure where ...that Sulfa inhibits Folic acid in the same way as MTX ....any ideas?? and if so does anyone take a supplement and at what dose.....

Really looking forward to getting to know you all - Great to have someone to talk to who understands what I'm going on about - well hopefully you will ....

Hope your all having a pain free day..

Love SS

skezier

Hi Shiningstar,

I was on sulfa for about 9-10 months but had to come off it cus of a reaction to it. I cant remember if I got a taste in the ,mouth then or not I am afraid. There is a thread over on the CC forum about taste in the mouth so maybe that could help you? Anyway nice to meet you and welcome to the site. Cris x

jaspercat

Hi Shining Star, welcome to the forum and nice to meet you, I had to
stop Sulphasalazine due to problems with my blood, I am now on MXT but I am sure alot more people on Supha will come along soon love Jaspercatxx

shiningstar

Thanks you guys for replying so quickly...Cris what reaction did you have and did the Sulfa work at all for you.
Jaspercat - love the name - I have had a few ups and downs with my blood but no one has said very much what was it that made them take you off it...

Look forward to any other suggestions too..

Thank you !!! SS

Wonkylegs

HI Shiningstar & welcome to the forum

sorry you are having this problem at the moment .... have you read the leaflet that came with the tablets to see whether this altered taste is one of the possible side effects?

I can't remember having that particular problem with Sulphasalazine, but I did have a never-ending thirst, not to mention the bright yellow wee :oops: :roll:

hope you manage to get rid of the problem

will look forward to seeing you posting on here.

WOnky

hileena111

Hi Shining Star
Sorry cant help with the medication....Just to say welcome to the group
Hope to see you on often

Love
Hileena

dorcas

Hi shiningstar and welcome to the forum

I was on sulpha years ago but stopped taking it as it didn't do anything for the arther. :roll:

don't remember having a sore tongue or metallic taste. :shock:
maybe you could ask your pharmacist about side effects? or your rheummy when you next see him/her. :?:

hope that it is working for you though and controlling arther?

great you found this merry band of peeps and took the plunge and joined us :!: look forward to seeing you popping up around the forum.

Iris x

woodbon

Hi I can't help either as I've no experiece of this drug. I just want to say welcome to the forum. I'm sure you will get the information you need. Love Sue xxxx

polly24

woodbon wrote:

Hi I can't help either as I've no experiece of this drug. I just want to say welcome to the forum. I'm sure you will get the information you need. Love Sue xxxx

hi had the same problem with the tast it tock a time but did go away as it does work you have to way up the pros and cons if it works for u then y have to put up with the side affects hope this helps was on it 4 6 years pollyxx

caprica

Hi, I didnt have any of those side effects with sulfa - felt really good on it and the arthritis pretty much went away.. but it lowered by white blood count so had to stop taking it.

everyone's different, and a lot of people find the side effects lessen with time. hope it works for you

dreamdaisy

I've been on sulphasalzine for years with no side effects from it. It keeps my psoriasis at bay but does little for the arthritis. I don't count yellow wee as a side effect: in my book side effects are things that make life more miserable.

Folic acid is taken alongside meth in an attempt to lessen the side effects from the meth. Sulph is taken as an NSAID in its own right, or to support meth.

I too have a yellow tongue and nasty taste but that is from Naproxen, an anti-inflammatory. DD

bertyboy

hello and welcome from me , sorry cant help with your question x

janie68

Hi

I have taken sulpha for years and I only suffer from yellow urine. I was on 3 tabs twice a day but I had rotten headaches so reduced to 5 tabs a day which is ok. No taste probs I'm aware of. DD, sulpha is a DMARD not an anti-flam but it is early & we can be muddled can't we first thing in the morning!!
Janie

shiningstar

Good Morning everyone and thank you all so much for your replies....good to know your not alone in this wretched battle against Arthur......I just wish Id found you all years ago. It's amazing how we all react so differently go these drugs. I too had headaches Janie when I went up initially to only 2 tablets but have increased the dose really slowly and they have not come back....
I was also under the impression that Sulfa was a Dmard.......really hope so as my biggest worry is more joint damage....Have noticed lately that lots of my joints seem really noisy.....sort of creaky grinding noise ..bit worrying does anyone else have this ???
Got apt at GP this morning so will let u all know how I get on with Tongue and taste .
Speak to you all later
Shiningstar

frogmorton

Hi Shiningstar

Welcome to the forums from me

we is lovely

Have you time to wizz over to chit chat - there is a thread about this very subject - nasty tastes so worth a quick look.

Love

Toni xx

skezier

Hi Shiningstar,

I had chest trouble, a permanent cold, sore eyes, felt wished, aggravated the ulcer and something else that I don't remember..... It did work for about 3 weeks and then all went wrong for me. I didn't realise I was having a reaction for a bit but thankfully saw a doctor who did and came off it and went on to mtx.

I did get ulcers in the mouth initially on the sulfa as ell but still can't remember if there was a taste.

Hopefully it will suit you and the side effects often can stabilize as you get used to it. Cris x

dreamdaisy

Thanks janie, not like me to muddle that sorta stuff. No wonder it didn't stop the inflammation then but it does keep the P bit of my PA at bay, most of the time. DD

speedalong

Hi Shiningstar,

just saying hi, as I have OA - and have no experience of your med.

Speedy

cebeem

Hello Shiningstar
Im new here too!
I take sulf'n but have never felt good taking the 500mg 2x per day, after reading all the post ...I have had a tender tongue and my dentist always remarks on the lumps and bumps on my tongue but I did not connect it, as for taste ...things never seem to have enough taste like they had before. I have been taking it for 7 years this time.

Welcome to the forum.... I have been looking for advice too, and cant believe some of the things I am finding out, its good to know we have all these lovely people to support us ..CB

ironic

Hi there, Just wondering how you went on at the Dr's. Do hope you got some answers.

Take care,

Ix

donnas

Hi, I'm on sulfasalazine too. Had to cut back as my lymphocytes were in my boots and it made me extremely run down, with cold sores and repeated throat infections. Obviously my consultant disagreed that this could possible have anything to do with the drug, as he is a contrary ****.

Hope you get to the bottom of it quickly.

whitey44

Hello Shiningstar

Welcome to the forum family, as I like to call it. Unable to advise re meds but wanted to confirm that we all understand what you're going on about. Isn't that great :!: :?:

Pure wishes & love

Whitey X

shiningstar

Hi Everyone
Sorry Ive been absent few days have been away for weekend to visit relatives and boy has it taken it out of me - feel exhausted just don't seem to have any energy these days.

Anyway saw doc on Friday and she wasn't sure about the folic acid but said that sore Tongue was deffo a side effect of Sulfa - she said try a folic acid supplement and see if it helps - well took
one each day for last 3 days and it is definately improving - hardly notice it's there now so hopefully if I keep it up it should pass .
I also have low Lymphocyte count just marginally and think it's been like that for years but doc says that's because of Ra not drugs !!
Hope you've all had good weekend looking forward to catching up on all the posts.
Love Shining StarD

dorcas

Hi SS...

great to hear that you're getting a good result already from taking the folic acid supplement.

Iris x

julie47

Morning shiningstar

glad you had a good weekend.

No advice on med but welcome to the forum

Love Julie pf x

dreamdaisy

Hello shiningstar, I'm glad you have sorted out the tongue thing, that sort of stuff does get one down, doesn't it? I am also glad you enjoyed your week-end - never mind the payback, the fun is the important bit as it does take one's mind off everything else. Rest well today, cruise round the forums and add your two penn'orth, as my dad used to say. DD