More pain on sulfa?

More pain on sulfa?

Has anyone else started sulfa and been in more pain than without it? I don't know if it's the progression of the disease or the medication. It would be so much more convenient if I were just crazy and making it all up. :( If it is the progression of the disease, then I am terrified. My pain scale is a little skewed - my '10' is having a stroke, so everything else pales in comparison. Today my hands are sitting at about a 7 and I'm going more than a little nutty. My knees click and grind and even my toes are sending little electric jolts when I walk. I'm back on prednisone, but I'm going to call my rheumy's office tomorrow and tell them that it isn't sufficient. I can survive this level of pain, but how am I supposed to LIVE with it?

I can see knuckles, which would be hopeful if they didn't HURT so ruddy much. I just want to curse and run away, but there isn't any place where I wouldn't still be me. I am in the middle of applying for a guide-dog, but I question whether I could give one the care it needs. It feels like I'm never out of flare. I guess at least I'm thorough. *sigh* And it's such a perfect day out, too.

16 Replies

  • Poor you, Bats. It's not fair that you have to put up with so much, but then life isn't fair. I certainly found Sulfasalazine unhelpful. Objectively ( ie judging from my blood monitoring) it made no difference. Subjectively (and that's what matters), I felt terribly depressed on the drug and I'm sure that this impacted on my perception of pain. But that's just me; others find it really helpful, though my consultant confirmed that it can have an emotional effect in 'sensitive people'

    I hope that's helpful, or at the very least, not unhelpful! J xx

  • It is helpful, in that my mood has gone waaay down, though how much of that is due to the meds and how much to the pain is hard to differentiate. I haven't hit the one month mark with it yet, so it can't be said to have failed yet. I'm going to ask about some NSAID help for the really bad days, though. I got otc acetaminophen with codeine, which might as well be sugar-pills, but until my doctor gets back it'll have to do. Thanks, Jo xx

  • codeine can not only cause constipation but also feeling very low. As the inflammation causes the pain, it would be so much more beneficial to you to take an anti inflammatory ( I apologise if this sounds obvious). I take Arcoxia which is a god send. I don't know your circumstances but may well be worth asking your GP potentially? x

  • Big hug for you Bat. Hope you will feel better soon.

    Xxx. Jane

  • didn't get on with that drug either. It left me completely breathless and didn't remove any other symptoms, so it was like wading through treacle whilst wearing hobnail boots and still suffering all the other nonsense from RA. Stopped it after just a couple of weeks much to my Rheumy's disgust as she was insistent that 'it doesn't cause those sorts of side effects'. This was about 18 months ago and I've not had a recurrence of breathing issues since stopping Sulpha whatever, obviously 'one treatment DOESN'T fit all and you do know your own body better than them, even if they don't believe it. I wouldn't recommend anyone else just to stop prescribed medication but keep a pain diary, it's useful to see where you are and opposed to where you were and if nothing else you can throw it (literally if the mood takes!) at someone.

    Gentle hugs


  • Hi Bats,

    Sorry you are still in so much pain, that was the very first drug they put me on in the very early stages of RA, 18 years ago. I was taken off the drug after 5 years due to it causing a rash, which I was told that can happen when you have taken it for that long. It did help me at the time, but if I was to take it today, who knows... As you know we are all different some drugs work for one person but not for another.

    Best to contact your Rheumy clinic or your GP ASAP it sounds like you need your meds changing or for them to give you something else as well. You said you are on prednisilone, what dosage are you taking? I am on 20mg plus 30mg Targinact prolonged release twice a day whilst waiting for my first appt to have Tocilizumab infusions.

    I really do feel for you, I am having constant flare ups in the meantime.

    Take care, gentle hugs from me. Sue x

  • Thanks Sue, I'm on 10 mg prednisone, and a month-long taper. My hands are really on fire today, so I'll be calling the rheumy tomorrow. I think I'll call the gp as well. I'm really lucky in my care team. I won't be taking my acetaminophen again, though, because my stomach protested loudly and at length (I've got acute chronic gastritus, too). All in all, it was not a restful night.

    Gentle hugs back, MaryBats xx

  • Hi MaryBats,

    I started to reduce the steroid from 20mg by 2.5 down to 15mg and my Rheumy Consultant had to increase it back to 20mg and now I am still taking 20mg as it is taking a long time for me to start on the infusions. I really hope your Consultant will increase your steroids so you will feel a lot less pain. My Consultant stopped Enbrel as he felt that it was the steroids that was controlling my RA pain, which is why I am waiting to start the infusions. At least I feel more relax now I know that I have been approved for the infusions, I just can't wait to get started. I want to get started on the injections so that I can visit my son and his family in Canada, otherwise I will have to miss an appt for my infusions and I really don't want to do that.

    I hope you can enjoy the weekend, the weather where I am is mixed, it doesn't seem to know what to do, sometime it is lovely and sunny and the next it looks like it is going to rain, not good for RA, makes our joints cry out in pain.

    Take care, and good luck tomorrow when calling your

    GP or Rheumy clinic. Sending gentle hugs, Sue xx

  • Hello Azbat, so sorry to hear of your troubles and hope you are feeling better this morning.

    I was given Sulphazalazine in Feb to go along side Mtx with a loading dose to the full dose of 2000mgs daily first week of March so am a little further down the line than yourself (full dose for two and half months).

    It definitely has improved my symptoms, has brought a CRP of 149 before treatment to normal now and very little inflammation although still pain if I do too much physically or become upset. When I told my consultant, who was pleased with the bloods, that - he said something alone the line of 'there will always be some pain you know'!

    So it seems to be making a positive difference for me so long as I eat and rest well and drink lots of water.

    I am so glad to see Jora's post and others about SSF affecting emotions. I have been sobbing and getting into a pitiful state at the slightest frustration lately and my family have started peering round doorways to check me out before coming into a room! This has been frightening because I thought it was me being evil and so am trying keeping my thoughts as peaceful and in the moment as possible.

    Sorry this is long winded, precis was never a strong point. It maybe just early days for you on this med, and as is understood everyone is different.

  • Thanks so much, Sandrajb, I'm sorry to hear of your troubles too! My mood is strangely good this morning, even though it was a rough night. I've been thinking about what I can and cannot control. I really can't control whether the sulfa works or not. I can control how I respond to pain, though. I can choose whether or not I brush my teeth and wash my face, what I eat, how much I do. It was good for me to know, too, that the med can mess with emotions, because then I can take care to support my mood, you know? It's also good to know that I'm still in the early days of sulfa, because I'm just on my second week of 2000 mg.

    Clearly precis is not my strong point either :)

  • I had terrible trouble with Sulfa, my first DMARD. I only knew how low it brought me when I stopped and everything seemed to clear again like a dense fog lifting. It gave me anaphylactic shock after three weeks so I had to stop it anyhow but the low mood was really horrid. If you can bear to then hang in there as many of these drugs seem to take a while to work and also for side effects to settle down. But if you can't then you can't - maybe time for one of the anti-tnf drugs for you? Txx

  • Twitchy, I'm upping my sulfa on Friday and not looking forward to it, but know that I know the med can destabilize my mood I'm more actively trying to boost it. I don't think my mood is low enough to merit dropping it, but I've let my worker know it's affecting me, and I see my psychiatrist tomorrow. I'm seeing rather more of my knuckles than I have in years, so the inflammation must be decreasing. My hands just puff right up again when the weather shifts dramatically. Assuming there will always be some pain, how much do I just need to deal with it? xx

  • I do hope it works out for you Bat - I'm really struggling myself and not even got a nasty drug to deal this week with apart from hefty doses of pain meds. Hope the psychiatrist and GP are both able to offer you more support while you wait to see if you can get used to Sulfasalazine. I know of several on here who struggled with it to begin with but then things settled down for them. Txx

  • Hi Bats,

    Did you manage to get an appt or speak with your GP or someone at your rheumy clinic today? I hope they could help you and sort out your medications.

    I really do hope you are feeling better today. Take care, gentle hugs from me. Sue xx

  • I'm going to see the gp on Friday. The weather has been really warm and nice (until today) and I thought perhaps I'd been overstating things. :P Apparently not. I honestly don't care what he suggests, as long as he suggests something. I can handle the rough days, but the hideous ones knock me over. Ah well, I went out with my adaptive crew today and walked 2km, then got toted the rest of the way and back. I'm supposed to teach a piano lesson tomorrow, so I'm hoping I hurt less by then. Thanks for the concern, and hugs, MaryBats

  • Good luck on Friday with your GP, I wouldn't leave his/her office without it being sorted. I don't like steroids but they have helped to control the pain. My nurse said I wouldn't be able to get out of bed in a morning without them, I am pretty close to that now some mornings. I received a message today and they said they had to wait 4 months to start the infusions due to a shortage of beds. They now collect the injection's on a monthly basis. I am hoping my rheumy clinic will allow me to do that if I have a long wait to start the infusions. Take care, let me know how you get on with your gp Friday. Gentle hugs in the meantime.

    Sue xx

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