Posted , 7 users are following.
Hi! I have just started taking Sulfasalazine, i am upping my dose over the next 4 weeks, i am curious to hear about people's experiences with this drug good and bad! The dmards scare me if i'm totally honest, trying to keep an open mind as much as possible 
Any info would be great, and thank you in advance.
0 likes, 24 replies
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borderriever tracey0603
Posted
I used to take DMARD medications for PsA and went through the whole lot of them. My last attempt was Methotrexate Injections, and I failed on those once more. Sulphersalazine was prescribed over ten years ago and I also had bad side effects. So now in my case my new Specialist was so annoyed with me not been able to take DMARD medications discharged me and that was that. Now I just take Celebrex NSID, Tramadol and Amytrptalene. Because I cannot take DMARDS this Specialist has refused me Biologics. It is strange and I do not advise you try this I have stopped using Steriods and Steriod Creams etc and now my skin is beginning to clear.
I still use Epaderm, E45 and Aquatious cream when needed, so I do not know what to suggest, DMARDS in the past really banged down my White Blood Count and I was very ill.
Most peole seem to get away with taking these drugs and do go down the DMARD and associated Biologics, taken both together, I personally wish you luck with that pathway, Hope you get some relief.
BOB
Carolineq8 borderriever
Posted
Sorry to jump in but I heard if you've tried a certain amount of meds and they do t work then your next step is biologics, can you not be referred to a different rheumy? I think it's awful you've been treat this way as not everyone can tolerate certain meds and if they make you sick then why would you want to continue on them, I would seek a second opinion.
borderriever Carolineq8
Posted
My new Specialist seems to concentrate on joint and tendon damag, I had trigger finger and He eased of the tendon, I now just need to phone His surgery if I need any further operations.
I understand in our County, if you cannot take DMARDS they will not give Biologics if they cannot give both drugs together, I will have words with a new GP at Practice and see what can be arranged.
Some Specialists are a problem although they did say I was in remission ??
Carolineq8 borderriever
Posted
Oh I didn't realise that was the case with the meds I just thought to just discharge you because you can't tolerate a certain med is just cruel, I would still go back and see your GP tho, good luck with it all 😊
tracey0603 borderriever
Posted
Hi Bob,
That's not good! They should be offering you biologics, i thought that was standard if you can't tolerate dmards. Sorry to hear you struggled and i understand, i tried methotrexate first and that was dreadful so this is my second offering so to speak. I am only 4 days in on sulfasalazine so will see how it goes, so far i've just felt ill on and off the meds it's quite annoying.
Tracey
borderriever tracey0603
Posted
BOB
tracey0603 borderriever
Posted
Tracey
borderriever Carolineq8
Posted
I had this trigger finger and they did the op just on the ward. It took them no more than ten mins to get a result.
Mind I am in my mid sixties, older and I am reluctant to ask for DMARDS or Biologics now because of the way they change the structure of the blood, white blood cells, mine used to tank out and my immune system seemed to be affected
Carolineq8 borderriever
Posted
Ye they don't seem so nice and I totally understand where your coming from, if they say your in remission then I would leave well alone, however these drugs are used to prevent further damage to joints so as long as there monitoring you then that's fine I suppose but you still need a doc that has your best interests at heart until you get the all clear completely, let me know how it goes 😊
borderriever Carolineq8
Posted
BOB
Carolineq8 borderriever
Posted
Thank you bob 😊
robert271163 borderriever
Posted
That is outrageous, not sure where you live I am in Shropshire and have a great Rhumy, He took me through Sulf then to Methatrexate and I am now on Cimzia, In saying that a friend of mine husband has PSA he started on MTX which hasnt agreed with him is now just about to go on Sulfasalazine, but like you he has had trouble with his Rhumy getting treatment and progressing through the range of drugs that is available to us, I just do not understand why there is not a set down progression that they should be following, I know not everyone is the same and everyone has different reactions but there must be something that can be done, personally I would go to the General medical council and complain that they are not meeting my needs and my rights as a patient.
saucysal tracey0603
Posted
It also took a good 3to 4 months to show any improvement
But my joints are less painful and feel less stiff. They are also less swollen. As such I have been able to reduce My NSAID which were upsetting my tummy.
Please give it a try.
I hope it works for you
Sally
tracey0603 saucysal
Posted
Hi Sally
Thank you, they have told me to up my dose over 4 weeks but i'd rather take it slower and get used to it if i'm honest, i also struggle with NSAID's they are really make me feel sicky.
I will stick at it and fingers crossed this is the one! Methotrexate was horrid for me.
Tracey
robert271163 tracey0603
Posted
I started on Sulf and like you was on a steady increase, It worked for a while but after about a year it stopped working for me, Methatrexate was introduced to work along side Sulf and steadily increased, yet again that was working but after a year or so that stopped. I am now on Cimzia injection, I am still using Methatrexate but have stopped the Sulf all together as well as the most of the pain killers and ibrupen. So far so good
tracey0603 robert271163
Posted
Hi Robert
I have a sneaky suspicion that they may want to add Methotrexate in the mix, i really want to wait as long as possible for that though. Will just have to wait and see i suppose, I am pleased you have been able to stop most of the pain killers, that's really good! It's the side effects of Methotrexate that make me wary, but i don't think i gave it long enough if i'm totally honest, will just see! Thank you for your reply
robert271163 tracey0603
Posted
Hi Tracey
The other way to look at it is if you add MTX and that doesnt work then your on your way to a Biotic, Embrel Cimzia Humeria, the result I have had beeing on Cimzia is great.
Every Med can have a side effect so I wouldnt worry too much get it take it if your fine no problem if not you come off, Sulfasalazine can be as bad as MTX.
The longer you leave it the more pain and the more damage but its your body your choice
Rob
tracey0603 robert271163
Posted
Hi Rob,
I know, will just have to suck it up and get on with it!
I think i expected a little too much also, i have been alright for the past week on sulfasalazine but apparently today i'm feeling dizzy and rather horrid, will keep going though, fingers crossed!
Tracey
robert271163 tracey0603
Posted
How are you doing with Sulfasalazine now? any better ?
tracey0603 robert271163
Posted
Hi!
I'm just about to start the last increase this thursday, seem to be okay, a few days where i've felt like i've been hit by a bus!! Also a an issue with the toilet
but i'm not noticing any improvement as yet and my psoriasis is back in full swing, but i'm tolerating it so far x
Tracey
robert271163 tracey0603
Posted
It does take time for Sulfasalazine to kick in. best of luck
Elle0606 robert271163
Posted
Hi Robert, I am newly diagnosed with spondyloarthritis but nowadays I have a good access to biologics and i was precribed cimzia. Just did my first dose. are you still on cimzia? when did you see any improvement? dis you have to wait for some time?
i am just so scared cos I have not seen any difference except for the disappearance of my low grade fever....the pain is still there