What a horrible dream! I’m sorry about your mood too! I try reminding myself that they go up again as well… not that it always works…
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Good point Cynthia - thank you!
Poo - I said in a previous thread some time ago that, when I took sulfasalazine, I came out in cold sores, mouth ulcers and warts. Hope that didn’t stick in your head and give you nightmares!
I’m laughing darifan. It might have done but I doubt it. I’m in still in quite a funk about the medication route and I think it’s that most of all.
No consolation, I know, but every morning I look at the fistful of medications I need to take and my heart takes a little nose dive. Then I think of the misery that those pills help prevent. I have to do the same each time I inject myself.
We’re human. 
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So I was told I had get my GP to prescribe a sharps bin for the diposal of the injectible mxt kit. I got the teeniest bin I’ve ever seen with openings too small for the remains of the kit. Sigh…
My GP’s surgery has got ‘outstanding’ in its latest inspection. It’s a perfectly fine GP’s surgery but they make me go up and down to them for each ‘prescription’ several times until they get it right. Or make me sit attached to my phone for at least 3 hours of a morning until they can talk to me! They waste a phenomenal amount of my time in this fashion…
I’ve been injecting MTX for about 2 years now. It gets easier as time goes on. I still don’t like taking it but I realize that if I don’t, I’m just going to get worse in the long run. I also inject my biologic. Needles don’t bother me much and I used to draw blood at the hospital. Can’t work in healthcare anymore because I have no immune system and I get infections all the time. I hope it all works out for you!
Lol! My GP surgery is in special measures. It’s outstandingly awful. My approach is to cultivate the receptionists. They don’t yet seem to realise what a charming, delightful and thoroughly deserving patient I am but obviously in time they will. And then everything will go like clockwork.
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How do I import photos? Honestly the photos of the sharps box they gave me will make you all laugh!
So mxt gives me the runs, fairly horridly. Now so stuffed up with immodium I’ll no doubt spend much of the week sorting myself out again until it starts all over again…
Of all the rules for dealing with doctors, this is #1!!!
Yep, used to happen to me too. With me, the upset tummy (both runs and nausea) eased quite a bit over time.
Not very patient or tolerant of medication that makes me feel worse just persistently. Hip pain is back with a vengence, both feet are complaining and elbow is rumbling again. Whilst now back up to 15mgs of steroids instead of 10mgs in a desperate attempt to stave off this increasing incapacity and feeling just blah. And that’s besides the foggy head, the now hugely bloated stomach which is tender and sore along with my behind from the horrific and virulent runs. Two weeks ago last Saturday before I started mxt I felt just fabulous! Was eating what I felt like, drinking what I felt like and doing what I felt like.
So mxt is supposed to help - is it? I’m just feeling more miserable by the day. So the whole thing is completely counter intuitive in my opinion. I’ll give it two more weeks but if I still feel this rotten I honestly don’t see the point. It may be allegedly protecting my joints but there’s no point to that if they’re raging nonetheless and I’m feeling just awful. What a waste of two weeks this far of cogent rational capable of being enjoyed life!
I wish someone could work out why certain meds react in a certain way with certain people. After all, theoretically, the injected version is meant to avoid the stomach issues! That said, I suppose you can’t even work up the dose week by week with the injections (whether you’re supposed to or not). It’s all or nothing, isn’t it?
Mum lives in sheltered housing and knows three people who have had MTX. One has no side effects at all - absolutely none. One felt sick for the first few doses. And one was so ill she had to stop them. How can that be? It just makes no sense to my non-medical mind.
Have you tried upping the folate dosage? Isn’t that meant to help with stomach issues? Just a thought.
I have made arrangements that, on the first day I take the tablets, I’m going to stay with mum for the night. I’m worried I’ll get a panic attack, and I really have a phobia of throwing up (partly because I very rarely do it!), so want to be with someone that first time at least.
Have we got a thread or something for side effects for tablets/meds? It would be useful if we could have some form of interactive chart or something where we could tick the side effects each of us have with different meds - a list of med down the side, and a list of side effects along the bottom, and then X marks the spot. Does that even make sense? Don’t think it’s remotely possible on a forum, but it would much nicer to look at than trying to read those blooming leaflets that come up with our meds, which scare you enough to give you the runs before you even start taking them!
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I think seeing an actual person that has a sideeffect scares me way more then the impersonal “possible” side effects list… lol
That said you could make an open spreadsheet in Google drive for that.
Darinfan,
I would try and ask for the injectible mxt rather than the tablets if you can. Sadly NICE and the rest of the world makes us plod this mxt path. And mxt does do wonders for lots and lots of people - apparently. I remain sceptical it will help me though, as I still find the research that it doesn’t work on its own for PsA, persuasive. Certainly I’m convinced it enhances the effects of many biologics though. But that’s just my thoughts. I threw up this time last year on the second day after taking the tablets for at least 24 hours. And I have a severe, ridiculous phobia of throwing up. The last time I threw up before that was July 1995 after eating a bad oyster. Should have noted oysters should only be eaten when there’s a R in the month. Sadly now as a result I’m allergic and can’t eat them anymore.
So I threw a mother and father of a tantrum after my one and only dose of mxt tablets (since I was still throwing a massive tantrum that I had PsA anyway) and am only now over it and so taking injectible mxt instead. It is better despite the virulent runs. Far better. Give me poo issues rather than puck issues any day. But it’s still a nasty drug at least this initally. My guess is all of the drugs are whether DMARD, biologics, anti TFN (or whatever they’re called) and things like Costenx (or whatever that’s called) which is so ‘new’ for PsA. So whatever happens my guess is that you simply find your own compromise. As you plod through them.
I am now feeling hugely better. As the day wore on my huge bloated tight painful drum of a stomach, stopped hurting so. It’s still bloated but I can live with bloat. Probably due to so many immodium frankly. And I’m sure after a decent night’s sleep off my loo tonight I’ll feel even better tomorrow.
I’m a little concerned as how inflammed I am presently but I put that down to just horrible stress. Mxt for me can’t be working presently (other than making me feel so initially unwell) and whatever my guess is that it shouldn’t be making me inflame on now 15mgs of steroids instead of 10mgs. So it has to be just stress. Certainly stress and my skin psoriasis, thankfully now non-existent have had a very long sybiotic relationship.
You never know though, Darifan. You might just take the tablets and be absolutely fine. Many people are. Many, many people are.
As you say it’s a pity you can’t be tested beforehand to know which one you are. But I can tell you this. The awful effects truly for me don’t last much beyond 24 hours. I’m someone who doesn’t like the waste of 24 hours though, but many other people are far more tolerant than ever I am.
I hope this helps.
I’m on 5mgs folic acid 6 days a week. Other than taking it on the day of mxt (as many others do) I doubt increasing it anymore would help. I will ask about that though when I phone the nurse tomorrow.
I’ve heard it said that some people don’t metabolise folic acid and they might need something else?.. I think it’s folate? Might be something to ask about?
Cynthia, Folate is the same as Folic Acid.
Thanks for the reply, Poo (I bet you wish you didn’t have that name now!!!) I admit I took the sulfasalazine with no gastric issues at all - my issues came along after a couple of months (just as I was feeling better) and had to do with various infections and my glands swelling etc. But I worked up the dose really slowly on that - which made me less stressed about taking them.
Which leads me to ask a question that I hope you don’t mind. Do you think your stomach issues are, in part at least, to do with how nervous you are/were with taking them? My stomach reacts to everything! I’m fine if I can see ahead with no blips on the horizon, but the least little worry or stress will get me in the loo - not as much as I used to as I have tablets to control the IBS-type symptoms now. But I know you said last week the runs weren’t too bad, but they sound worse this week, which is what made me ask, as you’d think they’d get better each week, not worse. Just a thought anyway.
As for the steroids, I went down to 5mg and everything just came back PsA-wise. Went to the GP last week and he’s put me back up to two in order to get through my break this week, but can’t say I am either as pain-free or as “well” as I was to start with, and it is very much a case of coming down to earth with a bump. I’m sleeping a lot more again, for example, but not in a good way. I mean all afternoon! And tomorrow, just to help, I have to go to the job centre to meet with someone who is supposedly to help me to “prepare for work” (which they have told me I’m not fit for). I have to get through that meeting without uttering the term “condescending b*stards” to their face! 
Hope you feel better soon, poo!!