Sulfasalazine

DebbieT

My fingers are crossed it helps toots I wasn't helped by it but lots are so I'm hopeful for you. (((( )))) xxx

Toots

Thank you so much Debbie! I know it'll be a while, but I feel slightly better that at least there is some hope it will work. Blooming sore last few days, I'm not sure I'll have the patience so no doubt will start moaning again before long haha! x

DebbieT

Ha ha You should see how much I moan :oops:
Hopefully it'll start working soon Are you taking paracetamol & a NSAID daily?? I'd ask about it if you aren't hun.xxx

theunfamousfly

Hi
I am new here ( not sure thats something I should be pleased about 18 months ago I was fine- but now I am fully qualified- stiff in all the wrong places with PsA).
I have been on Sulfasalazine since early May. I take 6 tabs per day spread out at meal times 2 per Breakfast/lunch and dinner.
I take them along with my Omeprazole and Diclofenac in the morning and never had an issue with it. I do have the odd day about once per week when I wake up with a "butterflies in the stomach" feeling that seems to worsen throughout the day- it lasts about 36 hours and can leave me feeling rather ill and tired- but I wouldnt like to say its down to the Sulfa. But its been since I hit 6 tabs a day though seems to be less frequent now. My bloods have been all over the place on it though hopefully are settling now.

On the flip side, they do nothing significant for me at all as far as I can tell. I also take MTX ( just started injecting cos I got the utter gagg taking them as tabs).
I have a friend with RA who did MTX a year before they added Sulfa/hydroxy and his RA was gone in a fortnight!
For me I had a three week hiatus in July when everything seemed to dampen down and I really thought I had something that was working, but it didn't last and I feel I am heading down again- notice slight new swelling in finger joints. The only slight benefit is I am not overly stiff generally in the morning but the joints are all still very sore/getting sorer.

I had the same with Leflunamide prior to Sulfasalazine, about 4 weeks in I had a good week or so then it all came back, then after upping the doseage a few months later, another few weeks in and things definitely improved before nose diving from March to July.

One comment the max doseage is I beleive 4g per day ( 8 tablets) though no idea under what circumstances this would be given. I think 3g is "normal" therapeutic doseage reducing if control is maintained.
My friend with RA takes them all in one hit - I dont beleive this is what you are meant to do but it doesnt seem to bother him and he has been well 4 years like this.
HTH
Kenny

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Moderator Foot Note: Please take your meds exactly as prescribed by your GP or other health professional

mike26

hi toots
this was my first dmard ,and only on it for 4 weeks,
my doctor phoned me and told me to stop taking it
it droped my white blood cell count down to danger level.
hope it works for you
good luck.dont forget regular blood tests..
mike26

Toots

DebbieT wrote:

Ha ha You should see how much I moan :oops:
Hopefully it'll start working soon Are you taking paracetamol & a NSAID daily?? I'd ask about it if you aren't hun.xxx

I'm still on 2 x 500mg Naproxen daily (and my Omeprazole of course), no mention of paracetamol from doc, so will ask about that when I see him (4 weeks time). Thanks Debbie x

theunfamousfly wrote:

Hi
I am new here ( not sure thats something I should be pleased about 18 months ago I was fine- but now I am fully qualified- stiff in all the wrong places with PsA).

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Moderator Foot Note: Please take your meds exactly as prescribed by your GP or other health professional

Hi Kenny
Thanks for sharing, I'm sorry to find you here! I know that it's hit and miss, but I'm working on the stay positive side of things just now. Whether that means I fall harder if they don't work, I don't know, but hope springs eternal, right?!! :roll:
Thanks to you too Mod, I'm a good girl, I stick to the letter of the prescription

mike26 wrote:

good luck.dont forget regular blood tests..
mike26

Hi Mike, thanks for the good wishes. I'm booked in for bloods in 2 weeks time to check all ok, so fingers virtually crossed. What will be will be and all that jazz

phoenixoxo

Toots wrote:

phoenixe wrote:

Continuing to hope for your non-explosion,
Phee

I found the article, thanks Phee x And thank you for the non-explosion wishes! So far so good, although I expect if there are to be any issues it may be once I've got more in my system?

You're welcome, Toots

With me, the trouble started after about a month, taking two tablets in the morning and two in the evening, I think – I'm a bit hazy on this, as it was nearly nine years ago! But with any new treatment, we can only give it a go, try to think positive, deal with the bad stuff if it happens. And for a lot of people, it's all good – not for me just yet, but here's hoping!

Best wishes,
Phee

Toots

phoenixe wrote:

You're welcome, Toots

With me, the trouble started after about a month, taking two tablets in the morning and two in the evening, I think – I'm a bit hazy on this, as it was nearly nine years ago! But with any new treatment, we can only give it a go, try to think positive, deal with the bad stuff if it happens. And for a lot of people, it's all good – not for me just yet, but here's hoping!

Best wishes,
Phee

That's what I figured. I've been super conscious about taking my dose literally right before my head hits the pillow. Takes me a while to get to sleep but I'm keen to do so just in case any nausea sets in haha! Probably wind myself up worrying about it if I'm honest, but at the same time, if it happens I'll just have to deal with it! What you say sounds about right, I would expect to be on 4 tablets a day by week 4. Will just have to take it as it comes. I sincerely hope you get some treatment that works for you soooooooon x

hedgehogrose

I have been told that I have inflammatory arthritis and prescribed Sulfasalazine. I have been taking for only two weeks but I feel so much worse than I did before I started taking them - is this normal?

Before starting these meds it was mainly my left wrist that gave me most problems but now its both wrists, both hands, shoulders and hip pain. By bed time I am just exhausted by the amount of pain and discomfort that I just want to sleep but then I can't get comfortable in bed and therefore can't sleep properly. I am going out of my mind as I don't know if the increase in pain is normal or if I should see my GP.

Any advice would be most welcome.

phoenixoxo

Thank yoooooooou

I think it's best to be prepared, for everything! (This may be because I have Anxiety .) I'm sure my consultant dreads seeing me, because I have so many questions. But I'd rather put all my concerns to him than try to answer things via the internet. Some websites are fine, but there's a lot of dodgy stuff too :?

Sorry, bit off-topic for a second! Hope your treatment plan's winning through

Best wishes,
Phee

phoenixoxo

hedgehogrose wrote:

I have been told that I have inflammatory arthritis and prescribed Sulfasalazine. I have been taking for only two weeks but I feel so much worse than I did before I started taking them - is this normal?

Before starting these meds it was mainly my left wrist that gave me most problems but now its both wrists, both hands, shoulders and hip pain. By bed time I am just exhausted by the amount of pain and discomfort that I just want to sleep but then I can't get comfortable in bed and therefore can't sleep properly. I am going out of my mind as I don't know if the increase in pain is normal or if I should see my GP.

Any advice would be most welcome.

Hello hedgehogrose,

I'm so sorry, for some reason I didn't see this post earlier! (My post above is for Toots.) I wasn't ignoring you, just in a bit of a rush before a friend arrived for dinner

As you might've read from my contributions to this thread, I didn't have much luck with sulf. That said, I don't recall my joint problems worsening – in fact, I'd received an intramuscular injection of depomedrone (that is, steroids in a butt cheek) to tide me over until the sulf started to work, so the inflammation was under control for a couple of months or so.

If I were in your position, I'd ring my rheumatology nurse or the rheumatologist's secretary, to get a message to the rheum that things aren't too good. It may be that a shot of depomedrone's an option for you too, but please note, I'm not a doctor!

Hoping you start to feel better soon,
Phee

Toots

phoenixe wrote:

Thank yoooooooou

I think it's best to be prepared, for everything! (This may be because I have Anxiety .) I'm sure my consultant dreads seeing me, because I have so many questions. But I'd rather put all my concerns to him than try to answer things via the internet. Some websites are fine, but there's a lot of dodgy stuff too :?

Sorry, bit off-topic for a second! Hope your treatment plan's winning through

Best wishes,
Phee

I have no issues with off-topic Thank you xxx

Claire38

I've been on Sulfasalazine for four months now (for PsA/psoriatic enthesopathy). I'm not sure if it's helping or not. I thought it was, but my pain is a bit worse again this week. Could just be having a bit of a flare.

My bloods have been fine since starting the sulfa. For the first three months I was advised to have bloods done every two weeks. The frequency has reduced now.

The only side effects I have are indigestion (this has been helped by starting Omeprazole tablets), and a couple of episodes of nasty mouth ulcers, but these seem to have settles now.

Toots

Thanks for sharing Claire, it's always good to hear others' first-hand experiences. I've been on omeprazole for a while, so far so good

Toots

I'm in a bit of a quandry with the Sulf and as yet undecided what I'll do tonight.

Upped my dose to 2 on Monday and come Tuesday I felt like I'd been hit by a truck. Incredibly sore throat, flu-like symptoms, headache. I didn't take a double dose of Sulf on Tuesday as I felt so awful. Sore throat is one of those 'call your GP' symptoms so I did. He was keen to know if I had a fever (I do not) and/or any red spots/purple blotches (I do not). I spoke to him about my red dots and he said it was likely caused by the Sulf. He queried when my bloods are booked for (which is Monday) and then decided if was at all possible I should try to push through the sore throat et al in the hope that my body would come out the other side.

I checked with the pharmacist about taking throat lozenge things (better safe than sorry) and she was concerned that I'd developed a sore throat but slightly reassured by the fact that I'd spoken to my GP.

Tonight I've discovered that the red dots I've been getting on my feet are likely to be petechaie related to low platelet count. So, now my quandry. Mum's adverse reaction started with flu-like symptoms and resulted in very low platelet count (she was hospitalised). I can't decide whether I should assume that even if the Sulf is affecting my platelets, it won't get so bad before being picked up by blood test due Monday that it would cause me real harm. Or whether I should play on the safe (and possibly neurotic) side and stop taking the Sulf. I'm only a week in but I've seen a marked change in stiffness in my joints - not sure if that's down to the Sulf or just one of those things, but it's a huge difference in how I've been for the last 3 months. Can the effects really start showing so quickly? Still in as much pain with as much bursitis lol.

Thanks for listening while I try to work it through in my own head lol. x

dreamdaisy

I was never advised to stop the sulph so I never do unless it turns into something very nasty. It is very unlikely that the sulph is working that fast for you, you are still on a very small dose - are you up to three per day? I also get rashes and spots etc but I never take a blind bit of notice because I've had them all my life; I may not be the best one to help out on this. Anyhoo, I hope you are feeling better today. DD

phoenixoxo

Hi Toots,

This sort of thing's always tricky. You may not know much for certain until you have your blood tests. Can you bring these forward at all? In the meantime, perhaps have a thermometer handy and contact your GP again if you develop a temperature. Is he aware that your dots have been diagnosed as petechiae?

Hope you're feeling a bit better this evening

Best wishes,
Phee

Toots

dreamdaisy wrote:

Anyhoo, I hope you are feeling better today. DD

I am, thank you Daisy, well better in my head anyway. Woke up stiff and sore as always lol, so maybe I was just having a good couple of days?

Finally decided to stop worrying over it. Truth be told, if I hadn't known about Mum's reaction, I wouldn't even be thinking about it, so have just given myself a good talking to and got on with the Sulf lol. I'm only on 2 a day right now, so a ways to go! Sore throat has abated anyway, so looks like doc may have been right about pushing past it.

Toots

phoenixe wrote:

Hi Toots,

This sort of thing's always tricky. You may not know much for certain until you have your blood tests. Can you bring these forward at all? In the meantime, perhaps have a thermometer handy and contact your GP again if you develop a temperature. Is he aware that your dots have been diagnosed as petechiae?

Hope you're feeling a bit better this evening

Best wishes,
Phee

Hi Phee, thanks for this. I've decided I'm just being paranoid lol and now have a handy thermometer. Bloods are due Monday which really isn't that far off, so I'm going to suck it and see! I mentioned the dots to GP and he said it's likely being caused by the Sulf, but wasn't perturbed by it. It's good old google that has suggested petechiae so maybe time for me to quit surfing ;-)

phoenixoxo

Hi Toots,

I'm glad you have a thermometer

Well, it's Friday already, so Monday isn't too long to wait! As for the surfing, this can be dangerous, but I don't think you can go far wrong with the NHS website (http://www.nhs.uk). In fact, as a general observation, I find it speeds things up with diagnosis. In times gone by, when I began, 'I've seen something online', the doc would be a bit wary. Nowadays, I begin, 'I have researched my condition on the NHS website and I present my findings', and he's all ears :P

Best wishes,
Phee

Toots

hedgehogrose wrote:

I have been told that I have inflammatory arthritis and prescribed Sulfasalazine. I have been taking for only two weeks but I feel so much worse than I did before I started taking them - is this normal?

Hi hedgehogrose, I'm so sorry I didn't reply to your post. As a fellow newbie of the Sulf treatment I can't really give you any information. From a personal perspective however, I find that the pain 'moves' around quite a bit, so it could simply be the natural progression of the arthritis as it's not being controlled by the Sulf yet. If you have a rheumatologist, you should be able to get a steroid injection to get you by. Hope you feel better soon! x

stickywicket

hedgehogrose wrote:

I have been told that I have inflammatory arthritis and prescribed Sulfasalazine. I have been taking for only two weeks but I feel so much worse than I did before I started taking them - is this normal?

Is it normal? Yes, I think so. Sulph doesn't work so quickly usually. It can take weeks. I think the 'worseness' is just what would have happened anyway. As the others have said, you could ask for a steroid jab to tide you over until the sulph kicks in. If in doubt, though, check with the doc.

Toots

You know, this issue about the depo got me to thinking. My GP said he couldn't in all good conscience give me one since I was seronegative, and medically it wouldn't be therefore be acceptable - I'd have to wait for the rheumy to decide on that. But GP can prescribe me Sulf instead??? Makes no sense to me!

phoenixoxo

Hi Toots,

That's strange, about the depo. I'm seronegative too, and my doc has given me depo injections quite routinely in the past, where medication has failed. I agree, it seems odd that your doc can prescribe sulf yet not administer steroids. Still, I stopped trying to understand 'the system' many moons ago, on the recommendation of my own GP

Best wishes,
Phee

Toots

Thought I may as well ask the question in this old thread, since it's related.

I had issues with sore throat just a week or so into taking the sulf, but pushed through and all ok since then. This week however, I've got the sore throat and nausea back again.

Is it possible that my body could still be adjusting a couple of months in and just having another moment reacting to the sulf? My bloods have all been ok (last one 2 weeks ago) so I'm not unduly worried. Just curious to know if this might come and go for a bit ...