After 12days of not feeling good on the Sulfa I was off it for about 2 weeks. So after the RA clinic reply making me feel like I had no other option, I decided to try again on the Sulfa as next consult not till 10th Sept and I need something to stop me being in constant flare.
I decide to try it a different way then prescribed so started the 1st pill of the week after dinner 7pm and for the first week I can say the itching has decreased though ability to talk in the morning and headaches from hell are still there with nausea/decreased appetite. I am taking anti-histamine as well every day too.
Spoke to RA clinic Helen today and told her what I was doing and she was do what ever you can to make it work, so she knows what my action plan is. Tues I am then taking one after lunch and seeing what effect I have for week 2 so fingers x.
Does anyone else who is on Sulfa have this strange thing in the morning of not being able to string sentences together? As soon as I went back on it I noticed it but wear off by lunch time....
My plan IF I can get to 4 pills is to take them every 8am/1pm and 2 at dinner.
23 Replies
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Well you certainly don’t give up Dee. Hope it works for you.x
Goodness Dee you are amazing for giving it your all as always. I am really sorry that you are in this position. I don’t have the side effect you describe so am no use at all but I so hope that you manage until your next appointment on the 10th. Thinking of you. x
I moved the Benepali around as it made me so queasy, so I really know its hard and stopped it when it gave me a sinus infection. But figured it had to be worth giving a good go again and cross fingers it's been ok for past month. The trouble with all the meds. it seems to me is the often strange things that occur and its turned me right off coffee. It tastes vile and for a few hours after injecting it, I can taste it ! but its an injection so is it in my mind ?I don't know really but swear it tastes like a tin can smells. And when taking LEF I found it gave me a vague headache so took at night and slept it off.
A few years ago the funniest side effect was one medication I had was new, experimental for blood clots so no PIL. I was in hospital and if taken without food made people have bottle green poo. It was actually very alarming ! Although funny I mean bright bottle green. So I hope you achieve your goal or the med is changed. I've never been prescribed it, so can't be more encouraging but will keep the fingers crossed for you.
I admire your tenacity it takes courage to swallow a pill knowing it has side effects but although I hate the term RA warrior sometimes it just seems right. If you get asked about a med. I know that LEF really worked well for me for years, had I not had the AKI I'd still be taking it, it made a huge difference to my life and I've asked about it again but been told not yet as its used in transplant surgery and stage 5 CKD. I loved it as the RA went into remission and life was normal, it took away the grey fog and I felt great. Be patient and reward yourself for being brave. You deserve a treat. x
Hope it works OK for you this time Dee, I didn't have those side effects, particularly not being able to string sentences together but when I was on Pred, I found I couldn't pronounce some of my words properly, it was really weird and had me really worried.
It doesn’t seem fair that you’re having to put up with side effects like that. Have they ever suggested biologics? Hope they abate soon or they offer something better x
Not yet but waiting to talk to Consultant as I feel he is the best one to discuss options. Based on the headache from hell this morning I think getting to week 3 pill will be a miracle but staying positive, x
Definitely not good and good to talk to your consultant. Most nurses are wonderful but the consultant is who you need right now. I hope you can touch base with him reasonably quickly 🥰
in reply to
Oh Dee this suffering is intolerable. You have tried and tried you can do no more. You should not be left to suffer with or without the medication. Time your consultant got back to you. 10th September is a long way away when your suffering like this. Your return to work in October will be impossible if they don’t help you x
That sounds like a horrid reaction to Sulpha - I only got headaches about 1 or 2 times a week.
If it were me, and I know its not, I would be back on the phone and being insistent that its not tolerable and therefore not taking it anymore. Then remind them they are leaving you unmedicated which is not a good idea for RA. I would keep doing this until I got satisfaction. There are other medications, for goodness sake.
I have to say, my Rheumy dept are really good, they respond and treat people with positive regard, really grateful for this.
I hope your plan works, but you really should not suffer horrid side effects.
It sounds like you really need to speak to your consultant as those side effects do sound extreme. When I started Sulfasalazine the nurse did say that if I had problems, to stop for a few days and then try again so maybe that's a common approach but if you have the same horrible experience this time you should get back to them straight away.
Well done for your tenacious attitude Dee but it does sound a though Sulfa might not be the med for you. Is it worth ringing again just to see if the consultant appointment can be brought forward or even if he could ring you before 10th Sept? I really hope you can get something sorted soon, good luck xx
I'm still on Metoject 15mgs. I couldn't take Sulfa alongside it, used it 8 weeks and was vomiting constantly. I couldn't go anywhere and carried a sick bag everywhere even to clinic appointment. Came off it and tried Leflunomide for 3 months - felt really good but I got a really bad skin reaction and it too was withdrawn. Went onto hydroxy and still struggle with nausea now take anti nausea tablet day of and day after jabs. It's manageable...just about!
I hope you find something that works a bit better for you. ((hugs)) M x
I had similar side effects with sulfasalazine, I was like a zombie for about two weeks once the dose was higher. I came off it and was given hydroxy to go with the methotrexate, this has bearable side effects but has had no affect on the RA. I'm due to start amgevita in the next week or two. If your issues with sulf don't improve I'd contact your rheumy team ASAP. Good luck x
thanks I did MTX and just did nothing for me apart from side effects and feel Sulfa is doing the same but I had a bad call with one of the RA team who told me well not many options left. So waiting for Consultant and will see how far I can get with Sulfa so I can show I tried!
Well after your last allergy problems I’d have thought that they’d be a little better at looking after you and taking you seriously. What utter rubbish that it’s Sulphasalazine or nothing don’t understand that one at all. There are probably hundreds of treatments out there which would probably suit you better. I’m surprised you’re on Sulphasalazine coz I always thought if you have a problem with aspirin or ibuprofen then it’s a fair assumption that sulpha might cause some issues. That’s what I was always led to believe. I’m assuming that you’re taking the enteric coated ones salazopyrine (sorry don’t know how to spell that). I always found I couldn’t tolerate the non enteric coated made me really sick but was ok on the enteric coated version. Good luck but I hope they don’t make you suffer much longer before a new plan is put in place.
Flipping heck! Full marks for your perseverance! You have done well to attempt the salazopyrin again after it made you feel so poorly before. I still think that it was a bit mean that you were told by that unhelpful staff member that there were no other treatments, as well as completely untrue!😕
I hope you do get on with this treatment this time, and if not, can soon be given something more appropriate. You've certainly given it a hell of a go!
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Anyone on Leflunomide, Hydroxychloroquine and MTX?
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