Thanks Sybil. Sulfasalazine does have ‘vomit’ far too high up on lists of side effects which scares me something terrible though. Whatever about being resident in my loo with the runs, I simply can’t be resident in the loo vomiting, heaving or facing the toilet instead of just sitting on it! So I think I’ve failed that one before I’ve even started it as I doubt I could quite manage swallowing any of its tablets. I’d simply just be too scared to.
Leflunomide tells me I simply can’t drink any alcohol at all on it. And I seriously haven’t read anywhere that anyone thinks it does anything useful anyway. So I would truly need to be persuaded it’s going to work before I sit here all summer not drinking any alcohol at all as that’s just miserable and incredibly boring in my view for a drug that no one appears to rate at all. I really do enjoy a glass of wine of a summer’s evening, playing ball with the dog and listening and watching the birds. It’s one of my greatest pleasures and sadly drinking fizzy water or tonic water or just squash etc just doesn’t do it for me. I also enjoy talking the dog for an evening’s walk and ending up in a nice country pub for a pint (usually of cider) chatting over the day with Alan and watching the sun go down before coming home again.
I am really happy to be be medicated (as I’m told I now require them) but with drugs that allow me to function coherently, not just from a PsA point of view but also otherwise. I really did think I’d manage on injectable mxt, I could cope the first week pretty well indeed, it wasn’t alot of fun but it was manageable. And I thought well it has to get better than this now but instead it got a lot worse. But obviously I can’t have the reaction I did last week again as I simply couldn’t work all week due to the persistent runs, followed by feeling pretty rotten as a result, the horrible brain fog which made me think I shouldn’t be driving and most certainly didn’t let me consider a case and write a decision on it and the splitting headache that went on for 4 days. One of those on their own might have been manageable but all three together just felled me. There’s no footpaths on the road I live on and no public transport either, so to get anywhere I have to drive. And I don’t live with Alan either. So I do require a certain level of coherent functional ability to get by. of not just my body but my brain as well.
The rheumatology nurse and me have played telephone tag all day so we haven’t got to talking yet. So I’m still awaiting the verdict with a certain amount of dread as of course the next options are just sulfasalazine and lefunomide. And I want to be seen as compliant too not just a big huge baby who causes untold trouble having hissy fits about vomiting (but truly a serious phobia) and alcohol. I’m also if truth be told abit scared of the biologics too. But reassured by everyone’s experiences on here on them.
So I can see there is a light at the end of the tunnel but at what cost? I went from throwing all my toys out of the pram last May to actually trying really hard to just get on with it this time and I’m still stuck really aren’t I? However at least now I’ve capaciated myself just fine this far on 10mgs of steroids a day! So of course when you’re not suffering a PsA incapacity issue you’re even less tolerant of side effects as all they mean is feeling seriously miserable for what appears to be no good reason. I’m a lover of the quality of my life and not yet that bothered by its quantity.
What did I tell you a few times already, Poo??? I’m just being funny, but, yes, be reassured because I would very highly doubt a biologic would make you feel like vomiting–TRUST me on this one because I was a big fraidy cat, and for the vomiting reason and the million other excuses I had to be against taking a biologic. Enbrel, Humira–those are the two oldest (I know) and most used (I think) and I’m not sure, but I don’t think anybody in this community has complained of that horrible SE (nausea/vomiting). The only SE I can remember is some of us get a small reddish spot around the injection site the first several injections, and some get a rash–but, nothing a little lotion can’t relieve.
I know you’ll be brave about the biologic–once you get on one, I hope you can say “the worst is over”!!!
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Well the verdict is in mxt is now discontinued and the next one I must take is Sulfalazine. Gulp! It doesn’t seem to matter that I’ve a horror of throwing up. Basically I’ve got to try it and see. I do find this protocol fairly brutal, I must say.
However I do need to be treated. I think whatever else about all my screaming about everything I do need to get a handle on coherent treatment that halts the progression as simply I’ve progressed in my view too far in just a year.
However if I throw up on this I am afraid the rest of the tablets will also be thrown out. And I will start most likely getting more than bolshy. Wish me luck.
sends even more good luck your way
Hey Poo,
we all react so differently to the meds that try it and see is truly the only way to go with DMARDs and even biologics. And the DMARDs you’re looking at (MTX and Sulfa) have been around for donkey’s years. Most people tolerate them very well. And if you’re so inclined you can always ask your doctor for an antiemetic medication. The irony of my suggesting this is that Zofran, a tried and true anti nausea medicine, gives me nausea!
I did ask about antiemetics. The answer was ‘no we prefer not to. We’d rather have you just tolerate it without needing anything else’. I kinda prefer that in an odd way, despite my issues with throwing up. Put it another way if I throw up I simply can’t take it anymore and that’s the end of that. If I don’t throw up well then it doesn’t matter.
However I did just read that if you’re asthmatic, you can have more severe side effects for some reason. I’ve been asthmatic since I was 18 months old, so that might be interesting, even if my asthma is barely negligible now, although I still take inhalers. I will remind them of the asthma history though.
just be sure you don’t work yourself up into such a lather over all this that you freak yourself out!
I’m trying not to janeatiu. But I had to go to the supermarket just now and I found myself talking out loud in the car doing the ‘this is what I should have said’ re-run of the conversation I had with this male Irish nurse who seems to have got asigned to me. It’s a good match though as he’s well able for me and even though I presently feel a little bullied, I know if needs be I can start shouting Irish swear words at him and he won’t take any offence whatsoever.
Vomiting won’t kill me. Dry heaving won’t kill me. It will make me cry and and get dreadfully upset, pretty dreadfully but being that upset or either vomiting or dry heaving won’t kill me. I know that. And I also know if I do either or both then I’m perfectly entitled to say enough is enough. And just maybe I won’t. And just maybe I’ll get far enough to actually find out if any of these drugs, allow me to stop steroids and do me some good too. I was actually really disappointed mxt threw me for 6. I didn’t mind injecting and I didn’t throw up and how I felt the first week was manageable and I sadly thought the next week it would be less of issue but it wasn’t to be.
Onward - for now I remain in my steroid bubble with nothing else and actually that’s not a bad place to be for the week or so before sulfalazine starts. I can walk 5 miles with the dog, get things done, drink as much wine presently as I feel like. So it’s back to just living in the day that’s here right now. That always makes me happy. Tomorrow hasn’t happened yet and there’s lots of today left to enjoy (if only I’d quit re-running that conversation with the nurse) but you get the picture.
At least there’s a plan and yet another way forward. And that’s a week or so away yet.