What does anyone take for side effects?

General
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It strikes me that I’m between a rock and hard place. I’m presently intolerant of putting up with side effects and can’t progress until I find a way through them.

So what does anyone else do, for severe diarrhoea besides immodium which has now made my gut feel awful? I’m sure I’m at the start of diverticular disease also. I’m now on max buscopan to ease it.

What does anyone do about the spaced out foggy headache thing that mxt brings along with the persistent headache? I’m presently on day 4 of a stinking awful headache. And yes I drink loads and loads so it’s not that.

What does anyone do about the nausea - thankfully now pretty much passed? But pretty awful when suffering it?

I can’t work presently due to these side effects which isn’t right so what does anyone else do about them?

And I’ve gone from someone was hopeful, full of get up and go and being pretty positive about everything to someone who’s very low in mood, feeling just awful and feeling so trapped by the whole thing that tears aren’t very far away most of the time.

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For diarrhea - I use Imodium as you have done, or codeine (Panadeine) if I also have a bad headache (codiene and Imodium work on the same receptors so I don’t use them together) -I find that codeine is not good for use for more than about 3 days as I become tolerant to it and it can screw with your pain perception systems. Plain, non - fibrous food (carbs and starches, like sweet potato, potato, rice, and bread, and easy to digest protein, like fish and eggs - I avoid salads or fibrous vegetables while I have problems as they’ll exacerbate symptoms, but hit them hard when the symptoms ease to help ensure adequate nutrition). Good multivitamin. Bananas (know to be a natural anti-diarrhea food).

For nausea, Maxolon (but it’s a motility drug - so works against Imodium, and depending on the cause of the nausea may not be effective, have also could tried stemetine instead). Good organic Lemon and ginger tea.

For stomach cramps, hot or cold packs, I find the wheat ones you freeze or microwave best. I’ve also found peppermint tea beats buscopan every time (and the calming effect on your whole gastric system can be great for nausea as well). Not to be used with severe reflux or GORD - it relaxes the sphincter between your stomach and esophagus, so exacerbates reflux / GORD.

I haven’t found much for the fog, I’m afraid, except to forgive myself. In my case, caffeine makes the stomach issues significantly worse, so it is a net loss to treat the fog this way. Just extra sleep, and scheduling doing the most menial tasks the day after MTX (admin like time sheets, travel claims, or at home, laundry, dishes etc).

Learn the locations of convenient toilets in situations like long commutes, or at the start of a full day conference. Go hungry if in doubt, and eat high - quality calories when at home with easy access to toilets.

I know this sounds like a lot, and it can seem really overwhelming. But it will pass, one way or another. Either the symptoms will ease a bit, and you’ll develop strategies to deal with them, or you will be considered intolerant to MTX and they will move you on to another medication.

Remember to give yourself a break. For me, I finally went to talk through it all with a psychologist about 2 years after it all started, and found it immensely helpful. I think it would have been great to have that support at the start - sometimes it’s just good to get an outside perspective to realise you are actually doing an amazing job handling it all, even if it doesn’t feel that way - that’s certainly what I see in your posts :grinning:

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My heart goes out to you @Poo_therapy. It’s hard. Maybe it’s my irish australian blood but i found the best thing for nausea was a 7 inch glass of pale ale or mid strength. After a while it settled down, about four weeks for me. It returned when my body started not liking it. Good luck

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Thanks both you. I came home from a walk in the woods with the dog - at least I was driving better today, up to now I wondered if I should be behind the wheel of a car at all - to a message from my very strident older sister telling me I need to be in therapy as I’m just fighting this and the more I fight it the worse it will be. Having resisted throwing the answephone this across the room and stomping on it (yes do smile) I thought about it. We’re both very lucky she lives in the USA and I live in the UK - that was my first thought.

I did therapy for nearly two years only stopping just before I got diagnosed, literally only a few weeks before I got diagnosed too. And I’m loathe to go back into it. It certainly helped for the issues I was dealing with then, the death of my very lovely mother, the nightmare of being her executor and fighting my dead step father’s executors who were behaving just awfully (my stepfather was as much as a bastard as his chosen executors incidentally so I had already spent the two years since his death which my mother survived him by, fighting them to protect my mother’s interests) and the fact that a girlfriend of mine set out to turn the head of my partner and he sadly was tempted. It was shall we say quite a lot to deal with.

But I find the required level of introspection for therapy difficult and very hard work. And I’d much rather be out and about doing the things I love instead. But my sister is right (goddamn her!) I am fighting this. I’m fighting this because although I’m told I’ve three joints eroding, even at my very worst I don’t seem to have been as bad as any of you describe. And low dose steroids do capacitate me very well indeed. So it seems just idiotic to set myself off down a road where I must deal with side effects which I find (to date at least) to be far more incapacitating than the disease itself.

Maybe it’s not such a good thing to be diagnosed so fast as I was. Maybe if I had suffered for years wondering what the hell was wrong with me and never getting an answer I’d be far more open to the issues of treating it as I’d be so damn relieved to know what was wrong me, that relief would carry me through in a much better frame of mind. Maybe I truly do need to experience it getting just awful before I can stomach quite literally all these horrendous side effects. I’m still just plain horrified that this is what I have. Much of that horror isn’t to do with how it makes me feel right now, it’s to do with how I might end up in the future.

I don’t think I’m ready yet to relinquish the actual capacity I have presently in order to treat this as from what I can see I must simply put up with the side effects to treat it. It seems from reading all what everyone on here says, many of you find the side effects more bearable than the disease. I find them worse. Far worse but that’s because I’m not yet as incapacitated as many of you are. Right now I’m on 10mgs of steroids per day. I could possibly manage just fine on 5mgs a day. I did for months last year. People with PMR take 5mgs a day for literally years without a problem, so potentially I could too.

That of course does nothing for the progression of the erosions. And I’m told being anti-CPP positive and now RF positive means I’m more at risk from erosions. Hence my dilemma. Most of me says ‘eff that’ and just concentrate on having a good day today. The rest of me thinks that’s just stupid. And then I go into the whole thing of ‘we treat our animals better than we do ourselves’. I’m an ardent animal lover and do believe in self-enthanasia for people too. I do think though the only thing worthwhile is quality of life and not quantity. I don’t have children so that helps that point of view.

Anyhow I’m going to take a break for now given I’m allowed not to take the next dose this Sunday. My blood tests came back normal so at least for now we know mxt isn’t insiduously doing any further damage. Yet. I’ve to talk to the nurse again on Monday and I’ll take it from there. Today I am doing better as the day increases too. The headache finally seems to be receding just a bit as well. Basically most things feel better for me after a decent walk in the woods with the dog and today I was able to do that.

Thanks Jen for the tips. I’m not a tea drinker at all, either the ordinary stuff or the ‘herbal’ stuff. And I only drink one or two cups of coffee in the morning. However peppermint is something I’ve forgotten about and Culpermin do great peppermint capsules which used to help me years and years ago so I’m off to get some of those. Didn’t know that about bananas. I’ve gone off them over the last few years so I’ll go back on them again. And MacMac a decent couple of glasses of white wine or rose or freezing cold cider always makes my world feel a lot better. At least I know I can drink moderately now on mxt.

And Jen you’re right. I am doing an amazing job of handling it. In all my fighting with myself, I had forgotten that tenet of therapy and it does feel better saying it to myself. I’ll keep saying it to myself over the weekend too and start properly believing it as well.:slight_smile:

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Your side effects sound much worse then any I ever had… Even the mouth full of soars honestly… those weren’t going to kill me… diarrhoea could if your not careful and its awful especially that bad! And with your fobia of trowing up, being naucious isn’t the same as it is for us!

Watch out with alcohol and MTX though… start slow to see how you react… I didn’t and got sick from 10% of the alcohol I would normally need to get that sick…

I really hope you’ll feel better soon! I don’t have any tips sorry… just don’t be so hard on yourself!

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Poo, I’m sorry you’re feeling so rough. I remember it well and not fondly! Something I did find helped the nausea was ginger. Now I like ginger and can eat it pretty much raw but even nibbling on stem ginger biscuits helped as did peeling a 1/2 - 1 inch slice of root ginger and adding hot water to sip. And ginger beer (with real ginger not the artifical flavouring). Actually, eating helped in general, nice bland things like crackers.

I also did some accupuncture which, in combination with the ginger, relieved it some. If I had to face the same mtx battle again I think I would ask for an anti-emetic straight off the bat (but I don’t know which one you can take with mtx). They can really help, I found this out because I started to get migraines which were causing 48 hours of complete incapacity and constant throwing up… metoclopramide is what I have in my “go to” box. Thankfully the migraines have passed, I think they were a side effect of leflunomide.

Oh, and you are maxing out on folic acid?

For the other end, I am a huge fan of probiotic foods to support your body to recover of it’s own accord … natural live yoghurt if you like it, kefir is good too.

I’ve yet to discover a magic remedy for the brain fog. I have fibro as well (and only accept that diagnosis because it came from the mouth our our mutual doctor in Bath) and had a phase with it all combining, along with side effects from another drug, that turned me in to a space cadet for 75% of every day. The only way out this one is through. Rest/snooze if that is what helps you or exercise and fresh air. I find going to the pool and doing some hydrotherapy exercises will often clear my head. Mindless tv works as well … not too challenging for the already fog challenged brain. I can’t believe I’m going to admit to this in public … I developed a bit of a Real Housewives of Beverly Hill and Big Rich Texas addiction. Hey ho, whatever gets us through the day :wink:

I read something at the weekend (albeit in a different context) it said “the time will pass anyway”. That is so true in this context too. Fighting with yourself really won’t help and you are doing a fantastic job dealing with it all. Put your big girl knickers on (this is my pep talk to myself when I’m having a wobble) and let the time pass to see if the mtx is going to help you. Dr E will not leave you feeling rough a moment longer than absolutely necessary if the side effects don’t settle and you’re not getting any benefit from it.

Let us know how you’re doing.

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Thank you Jules and Cynthia.

Ginger makes me gag, sadly. I’m so not a spice person and for me ginger is a little too hot. Yes seriously. There’s never anything like that in my house and absolutely no chillies or hot peppers of any description. Don’t even do green peppers but can do red or orange ones. I don’t even use ordinary table pepper to taste. Or if I do it’s so minimal.

Yes ‘time will pass’ and ‘big girl knickers’ are on up to my boobs incidentally. You know those old pictures of men long ago with their trousers belted up just under their man boobs, well that’s me presently.

I’m glad of the break and I’m glad finally of the wine too. No ill effects yet other than just calming down some more. My headache has finally almost gone after 4 days. I’m not on the toilet any more and having eaten a banana don’t think I’ll feel like doing so again soon.Until I ate the banana I kept thinking I might have to go today. Never ever knew that about bananas before. I’ve got the peppermint capsules and taken them. I remembered fresh pineapple is good for queasy stomachs so that’s cut up and presently residing in my fridge till hopefully tomorrow morning.

And I’ve almost stopped crying and feeling like a failure and just hopeless. Phew.

Thanks so much everyone and yes I am hard on myself - stupidly too.

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Same here! I truly don’t understand why people want their mouths to burn while they eat… :stuck_out_tongue:

Yay! For feeling a bit better!

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I have neuropathy in my feet and Raynaud’s syndrome–both related to PsA. I take gabapentin for neuropathy and nifedipine for Raynaud’s. On these medications the symptoms are pretty well managed, even when my disease is not.

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Sorry you don’t care for ginger. I’m trying to wean myself of my OTT coffee habit and have just made myself a tea with a sprig of fresh lemon verbena. My herbal book says this is good for nausea, flatulence and dyspepsia. I’m drinking mine hot but no reason you couldn’t let it go cold or make an iced tea if you prefer.

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Which herbal book is that Jules_G? I’ve tried lots of non-tea teas over the years but never got a taste for them. Maybe I should preservere though, just like I imagine I’ll be told to do with the mxt. Still just so relieved I don’t have to take it this week though…

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It’s The Complete New Herbal by Richard Mabey. I’ve had it a very long time … ah, here we go published by Penguin in 1991. Told you I’d had it a long time!

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Poo_therapy, my phobia of throwing up started so early in life I can’t remember when it wasn’t a phobia. I almost died from a ruptured appendix at age 15 months, and it took me 60+ years to figure out it was either the experience itself or hearing my mom telling the story countless times about how I threw up so much I was throwing up green.

When you grow up in a family with 5 siblings, you can be assured that the stomach flu will take down everyone in the house once a year. Someone without the throwing up phobia would not understand what happens in the mind of a kid during that horrendous week of yucky sounds and smells all hours of the day and night. I used to avoid everybody during that time–I almost avoided eating for a week or so, thinking I couldn’t throw up if I had nothing in my stomach. I know it sounds nuts, but that’s what a phobia can do to a person. I never throw up…I’ve had a couple severely nauseated moments–once with the pain of a kidney stone and the other time with severe vertigo. But the last time I threw up was over 45 years ago.

Where I’m going here is that my phobia is pretty much why I wouldn’t take MTX. Like you had sort of mentioned, if the SEs are worse than the disease, what’s the point? And, probably like you, my PsA isn’t is bad as some…although, it is bad, but to me, feeling nauseous and having to throw up is worse than almost anything. I’d probably rather have a heart attack–yes, folks, phobias make people irrational!

I’m also sort of a germaphobe in general, and if MTX combined with Enbrel compromised my immune system even more, it’s not something I would care to do.

So, I give you credit for at least giving MTX a try–I know it’s part of the protocol in the U.K. Here in the *SA it isn’t a requirement usually…one can get around it, especially if your psoriasis is bad enough. My dermatologist doesn’t endorse MTX at all, so luckily we were on the same page about that. She had a tough enough time convincing me to take Enbrel.

I hope you get used to the MTX and it doesn’t take you down every time, OR you can go to a biologic, which I’m pretty sure won’t give you any problems.

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Thanks Jules_G. :grinning:

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Thanks Gandma J. It’s a curse isn’t it - this phobia of throwing up. We’ll see what the nurse says tomorrow. At least the injectable mxt didn’t make me throw up, I’ve got to hang on to that. But it nevertheless took me out from working all week. I don’t really know how it goes. The first week was OK, not brilliant but OK the second week wasn’t. At all. I don’t know what happens if I have to try it again? Will I go back to the experience of first week? Will it just get progressively worse again or will I just somehow make it out the other side? And far more importantly will it actually halt my joint erosions? From what I read it seems lots of people go on from mxt anyway as for whichever reason its positive effect doesn’t last that long anyway.

I find it odd it makes me feel worse than the actual disease does anyway. That feels so counter intuitive. And of course now I’m getting scared of it and sadly most of the meds necessary to treat this. I don’t want to be getting sick as in having things like chest infections all the time. Not yet anyway when the actual effects of PsA on me this far is relatively mild on low dose steroids anyway.

I feel sort of lost as regards the whole thing presently and find it difficult to know how to go forward in a rational way.:confused:

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You said that you were doing well on low dose of steroids. What was the reasoning given for adding in MTX? I’ve seen some interesting research on low dose steroids recently.

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No reasoning, Stoney. Both my previous rheumatologist and it appears this one (but to a lesser degree) seem to appear to disapprove of steroids and want me off them and on the DMARDS et al path instead. Obviously (or now thinking about it I actually merely assume) their immunosuppressant function doesn’t halt the progression or the halt the erosions. However as steroids are immunosupressant anyway maybe I’m wrong on that. So it appears mxt isn’t really being added to the mix, it’s more that mxt is wanted to end up substituting for the steroids. Both the rheumatologists I’ve seen this far say they use it for the ‘gap’ so it’s not such a ‘gap’ either.

However from the start of all this in January 2016, my GP initially put me on steroids whilst waiting the 6 weeks to see the first rheumatologist. He felt it was an inflammatory arthritis issue from the start. (The foot had been an issue since early December 2015 as I simply didn’t recover appropriately from the bunion operation but my hand blew up after some over enthusiatic swimming in January 2016). And I instantly thrived again both foot and hand just got better. Started on 20mgs and slowly worked my way down to 5mg per day. Did better on 10mg but kept trying to make it just 5mg. I came off altogether in late April but was back on them again by late May again starting at 20mgs and working down and stayed on them till early December. (In late May 2016 I tried mxt (tablets), threw up and then threw them out after the first dose). I functioned pretty well but again would do better on 10mg but kept trying to get by on 5mgs. I then took none till April and struggled a lot as Naproxen and Tramadol helped the pain but not the function. My issues are my left foot, right hip and right hand along with truly annoying mostly right rib pain, Given I had finally decided to try mxt again and it wouldn’t be happening till late May, I felt I deserved some capacity especially as I was going on a motor boating holiday for a week in early May, which is an active holiday getting on and off boat, mooring up etc ect and fairly basic in the normal comforts of things like sofas and comfortable beds too! By then I also had raging left tennis and golfer’s elbow too. Again I started on 20mgs and am now on 10mgs. Loathe presently to take it down to 5mgs given I’m not doing so well this far ( to put it mildly) on just tolerating mxt.

My script for steroids always comes from my GP and never the rheumatologist too. Oddly. But I always tell the rheumatologist when I’ve decided to put myself back on them. It appears I just make that decision and the GP goes along with it. I suppose that is abit odd really thinking about it.

Steroids do make me fat and round faced but a fully functioning fat and round faced person! Before I started again this time, I could barely walk a mile. Mostly I hobbled that too. I’ve just come back from about a 5 mile walk in the woods on fairly rough terrain, with only a slight drag in my hip from climbing over a style which Naproxen will take care of this evening. I try and walk at least 2 to 3 miles a day and more on weekends. It’s good exercise anyway and does me the power of good mentally.

And since I started this time, my foot is fine, my elbow issues have disappeared, I’ve next to no rib pain and my hand is absolutely fine. And my hip behaves better when I don’t do too many 5 miles hikes and stick to the 2 or 3 miles.

Throughout alot of my life due asthma issues (now very much in remission) I’ve done short courses of steroids but starting at something like 40 or 50mgs. It’s a drug I’m pretty familar with and it holds no fear for me other than putting up with the weight gain and the round face! And of course wondering how much calcium is being leeched out of my bones. However I reckon I’m doing that good with all the present walking that I do anyway.

So what’s the research you’ve read? I’m very curious. I also do well mentally on steroids. I’m more positive and achieve just more ‘stuff’. At 20mgs I am a bit too ‘busy’ though. 10mgs is more rational for me mentally.

I know people with PMR take 5mg steroids a day for years without apparent issues. So I’ve always thought trying to get it to 5mgs per day is better anyhow.

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Poo_therapy, I think you’ll be pleasantly surprised once you get on a biologic…I can’t speak for all of them, though, so it probably depends on the one your rheumy starts you out on. And, I really don’t think you’ll need to worry much about your immune system. If you’ve done okay avoiding catching things while on prednisone so many years, I think you’ll be fine on a biologic.
I’m so tired right now I can’t think of what else I was going to say…
Oh, yeah. I would LOVE to take low-dose prednisone for the rest of my life!!! It sounds like it really helped you. But, my bone mass is so bad, I doubt my doctor would let me take it. It’s funny, my mom has taken it for years and hasn’t broken a bone yet!

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Thanks Grandma_J. I’m waiting with bated breathe today for the phonecall from the nurse which will decide the next course of action. My guess is that it will be give mxt another go. That feels scary to say the least. I do doubt however it will be skip to a biologic just yet.

Sadly I’m more in the frame of presently which says can we please just ignore I need to take anything more than prednisone! :persevere:

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One way of looking at this is that you’ve done well on prednisone and that could suggest you’ll tolerate other drugs very well too, it’s just a matter of finding those drugs. The Devil We Know looms large … some would pale at the thought of taking so many steroids throughout their lives. Yet you’ve managed and indeed you kind of like 'em!

I’m surprised I tolerate the drugs I’ve taken with so few problems. Only Leflunomide bothered me. A cup of strong coffee and I’m Speedy Gonzales, 2 whiskies might kill me, not at the time 'cos I’m sure it’d be lovely, but the next day. One single nurofen always turned me into a different and better person (in my opinion). But then maybe that was because my bod was crying out for anti-inflammatories.

Another way of looking at this - the necessarily upside down PsA way - you’re on your way to failing a DMARD! Fabulous! That’s step one of the 2 main steps towards biologics. I’d personally go for Sulfasalazine next, given the option. It’s a marmite drug in a way, most say they don’t even notice they’ve taken it & that it’s useless. Then there’s a minority(?) who simply cannot tolerate it, period. But that’s my cynical I Want Biologics Soon As approach.

None of this will help right now. You probably think I’m crazy. I can honestly see light at the end of this tunnel you’re in though, it’s not just Pollyanna speaking. And it may not take too long, not really.

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