Blue moon ... walking... blue skies day

Thanks to the people whio wished my luck ith my rheumy appt. yesterday and blue moon = apologies for badmouthing at w/drawal of MTX: th medics were right ands I was wrong !! Very wrong, actually, scan shows i have mild bronchiecstasis/ emphesyma - daignoes vary, but its only mild with 77% lung function which is apparently not bad for a reformed smkoer of nearly 74. Starting on SSZ [sulfsalazide] tonite so hope that works ok 4me. But a bum shot of steroids has got me out of the w/chair... how can i be so pleased at walking round Tesco LOL.. So blues kies ... looking 4ward to Tenerfie. How has SSZ been 4 anyone out there? As you can see haven't quite got fingers back yet but working on it. xoxox

15 Replies

  • I've been on sulphafor four years with no problems and it really helps me particularly with swelling!

    Enjoy your holiday xx

  • Can you tell me did you have any vomitting & diahorea with Sulfasalazine ? I took 1 tablet a day for a week started 2 pills a day on Monday & have been ill in bed with D&V exactely like I was with when I tried Mtx tablets then tried the injectioms. It seems whenever I try to increase the dosage I become very ill. I see my Rheumy nurse Monday & she said we will try again taking 2 pills a day- Ive got to build up to 4 pills a day !!! How thats gonna work I dont know I dont want to keep being ill & "out of it" for 3 days.

  • I have the same problem with higher doses of drugs . For that reason they left me on one a day ! Also have plaquenil now once a day but have to try to increase to two a day.

    However they tried to arava sulpha as a triple combination all on low dose but eventually o ended up having biological therapy as my stomach ( even with lansoprazole) couldn't manage . Then tried mtx by injection but still not good for bowel!

    It's hit and miss and being patient in this game , what works for one doesn't for another X

  • Sulfasalazine is ok for me but early days as to what effect it's having

    Good luck ☺

  • How long have you been taking it ? And how many pills a day ?

  • Hi Martini lady,

    I take 2 tablets twice a day and have been since August.

  • I started on 1 tablet a day for first week then 2 tablets a day 2nd week but on Monday (this week) when I tried 3 tablets I was violently sick & had Diahorrea. It took me 3 days to recover & Im still off work now.

    I go to see my RA nurse next Monday & she said "We will try 2 tablets a day - sometimes you have to take a step back to be able to go forward".

    I just wondered if you had any bad reactions ?

  • That's a shame- I haven't has any bad reactions. I did start on 1 twice a day for 2 wks then up to 2 twice a day. Hopefully you will be ok with 2 a day. I have coated tablets and have a snack with them. I was told not to have them within 2 hrs either side of omeprazole, which I have to take twice a day as well. I hear that some take a while to settle with them.

  • Thank you so much it gives me more understanding for when I go to Hospital nxt Monday. X

  • The magic steroid bum shot! Have only had one of those but it was brilliant - like the film Cocoon.

    Have fun walking about again, and Tenerife xx

  • SSZ works well for me. Took several weeks to take effect and side effects were unpleasant for a while but settled down. Good luck, hope it works well for you.

  • Try to get to see your Rheumy ASAP........I carried on taking Ssz for 12,weeks as my Rheumy said that was how long it would take to kick in. He was horrified when I saw him & said I should have stopped & contacted him as soon as I started vomitting.

    I thought I was doing the right thing & put myself through weeks of misery for nothing.

    I do hope you are switched to a more suitable treatment that helps you very soon.

  • I think it's better for your stomach if you have the gastro resistant sulfasalazine. I have noticed since been on these from normal ones I don't get the bad pains in stomach

  • so far i'm ok but only startd y'day on 1 a day for 1st week, gastrocoated caplets so will see how it goes. consultant told me off for NOT screaming at them wks ago LOL ... so much for the tough old granny facade. so will keep a careful watch on SSZ, for a laugh i got 'welcome back' from him indoors after the bum jab but after abt 5 hrs wittering the welcome turned to 'FFS shut up and go to sleep, woman dear'. nice to know there's still a spark of sorts after 52 years [ see gotta make jokes 2 cover!!] bye all xx

  • Been on coated SSZ for five years with no side effects, was on 6 a day at one point. Then I started getting flares and was put on Mtx around 3 months ago. Haven't had a flare since and the last steroid shot would have run out by now. Also still on 4 SSZ a day.

    I'm just hoping I can continue on this regime because I feel really good at the moment. My rheumatologist told me SSZ is one of the most easily tolerated drugs. I wish you all the best with it.

    Ally x

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