Methotrexate strikes again?

[Kutya]

I had some pretty nasty side effect from MtX initally, so they reduced the dose and added Enbrel. As far as the PsA symptoms go, the changed meds are working pretty well: the pain and swelling are not gone entirely, but both are definitely better. The nausea the MtX had brought is much reduced.

A couple of days ago, I bit the inside of my cheek: the sort of thing that usually smarts for a minute then heals in a jiffy. Not this time: now I have a small ulcerated mess there which shows no sign yet of healing, though it is not growing and doesn’t hurt that much. Should I just wait it out or go into some sort of full-blown panic? My general tendency is to ignore things, but maybe I should be a little careful with this. I do know that mouth ulcers can be a side effect of metho.

Any experience with this (latest) sort of nonsense?

[Cynthia]

I’m not sure… but maybe better save then sorry? No reason to panick though… I’m sure they’ll tell you to just wait it out… but yeah better have a doctor tell you that then us

[Stoney]

So first off, are you taking folic acid supplement? When I don’t take it for a week I start getting mouth sores.

Second off, you can start off by gargling with warm salt water a few times a day. This should help the healing process.

[Kutya]

Thanks. Yep, I take two folic acid pills each day, one AM, one PM. I’ll try the gargle. I’m not TOO worried about it: I’m thinking it’s just a run-of-the-mill bite-your-cheek thing, but with a (deliberately!) compromised ability to heal. It’s good to hear that for you it has been something that can come and go.

[Kutya]

I probably should. They have a great email-your-doctor setup, and my rheumatologist responds quickly. I’ll send her a message tomorrow, barring some sort of miraculous turnaround overnight!

[Grandma_J]

I bit my tongue, not once, but twice last week and today it finally feels better…it used to be something like that would feel better in 24 - 48 hours. But, this lasted 4 or 5 days. I’m on Enbrel, but not methotrexate. My sores seem to heal slower than usual, but they do heal on their own without antibiotics–although I use OTC antibiotic ointment on any cuts or sores on my skin to prevent infection…ugh, the thought of cellulitis or a serious infection of any kind is scary.
I’d show you a pick of a burn I had a few weeks ago, but it’s so gross everyone I showed it to gasped! I was using a hot glue gun and somehow the hot glue shot out unexpectedly on two of my fingers. Trying to get it off as quickly as possible, I tore the glue along with the top layer of skin on a nearly dime-sized area of my finger. I washed it about 10 times a day and kept antibiotic ointment on it–it took about two weeks to heal, the whole time looking a little like it was getting infected, but it’s totally healed now and no infection.
Hopefully, your sore mouth will heal on its own! I’d do the salt water rinses like Stoney suggested.

[Poo_therapy]

Definitely email the doctor. Last September I badly skinned my shin on a stupid step thing to reach high shelves in a holiday cottage I was in at the time. They couldn’t stitch it. Dare I say it’s only just healing up now. And I’m only on sulfasalazine! Yes you’ve read that correctly, it is only healing up now after 7 months…

[Kutya]

Interesting. In the months leading up to the nasty flare that left me creeping around with a cane and able to do nothing, I noticed that life’s usual scrapes and bangs were taking forever to heal. I attributed it to my pre-diabetes, and maybe I was right, but I wonder if there’ something about PsA, aside from the side-effects of the drugs used to treat it, which inhibits healing. You would think an over-active immune system might enhance healing, given that it encourages the overgrowth of tissues, but maybe not. It could be that the inflammation which results from the overactivity of such an immune system secondarily inhibits healing. I might try to read up on it.

The diabetes is under control by diet and exercise (A1c in the mid-fives and no diabetes meds), by the way, but with my inability these days to get much real exercise, I wonder if that’s gonna last.

It’s been over two weeks, as I recall, since I drilled that hole in my finger, and that thing still isn’t fully healed, though it is making progress and is not infected.

Life used to be so much simpler when I could count on my body to do its work without a lot of fuss. A blessing and a curse of youth is the unconsciousness you can bring to life. Oh well.

[Jen75]

Well, depending on the variety of the disease you have (yay for varety in life!), mouth sores can be a part of the disease (is for me), rather than the immunosuppressants.

I just go to my pharmacy, if they are really nasty, they’ll give me some kenalog or something similar (steroid cream for your tongue / cheek / gums). Serious I nfections inside the mouth are actually unusual - lots of bacteria, but apparently our mouths are very good at making sure they don’t get out of kilter.

One thing though, even if you solve it with your pharmacist, you need to tell your Rheumy next visit. Hard for her to see the big picture if you omit bits, just because you were able to manage them without her.

[Sybil]

Are you repeatedly biting your cheek in the same place, perhaps? I do that often & it took me ages to work it out lol. I think it’s related to difficulty sleeping somehow or other because the more relaxed I am at night, the less it happens.

And I think it may be a bit misleading to describe our immune systems as over-active, I reckon out-of-whack is more of a catch-all description.

However anything in the mouth that doesn’t heal needs checking out, just to be sure.

[Kutya]

Yeh, I’ll definitely let her know, either by email or at our next visit, which is quite soon. I am going to give it a day or two, though, since her reaction to “I had a mouth sore and now it’s gone” would be quite different from her reaction to “I have mouth sore that won’t go away.”

I haven’t really studied up on the whole immune system/ inflammation business. I guess I assume that since I am on two immunosuppressive drugs, the darn thing is overactive. I talked with my rheumatologist last time about studying up on the disease and said that I thought I wouldn’t get too deeply into it, not because I might then obsess, but because if I know too much, the knowledge might color the sort of objective input she might require from a patient. She said that made sense to her. If she had disagreed, she would have said so: not a shy person. I suppose at some point, particularly if there’s some sort of major decision to be made, I might study these matters thoroughly, but for now everything is pretty much as expected.

I feel differently about meds: those I research very thoroughly, and if taking one doesn’t make sense to me, I refuse it. I nixed statins, for example, and said I would take nothing for my diabetes until I had given lifestyle/diet/exercise a very thorough trial. My sugar is now normal, with no meds. (And my lipids are pretty good too.) I put up with that stupid allopurinal for years when they had me misdiagnosed as suffering from atypical gout. I kind of regret that, but it’s in the past.

[tntlamb]

So we have this VERY nasty auto-immune disease and when something goes horsepuckey, the FIRST thing we all tend to do is find a way to blame it on the treatment for this VERY nasty auto-immune disease as if not treating this VERY nasty auto-immune disease will make everything better. Too bad we don’t look at all the things this VERY nasty auto-immune disease commonly cause first instead of the things the treatment rarely causes.or was it the VERY nasty auto-immune disease in the first pace. Me I’m more worried about missing the first May Fly Hatch thanks to my pneumonia right now… THAT is a much a bigger problem than having to chew on oneside of my mouth LOL…

[Grandma_J]

That was a good choice, Kutya—I mean avoiding statins. They really did a number on me. The sad thing is I had asked my rheumatologist if statins could be causing some of my problems and he didn’t think so. He said he had lots of patients doing well on statins. Hmmmm. I wonder what he’ll say at my next visit when he looks at the Mayo Clinic physicians’ comments about that.

[Stoney]

My mother in law used to be “very worried” about the meds. Meanwhile, diagnosed at 36 I’ve always been very worried about joint damage and other health issues.

I solved the mother in law problem at least.

[Kutya]

True, though liver failure and massive lethal infections are quite “nasty” things as well, and the fact that the vast majority if people do not suffer from our disease didn’t help us very much, now did it? I can do nothing about having PsA, but I can damned well have a say in what therapies are used to treat it, and I will. I see no contradiction between this and attending to the may flies, or to anything else for that matter.

[Kutya]

That your mother in law may have been overly worried about side effects does not mean that ignoring them is wise (though ignoring HER for other reasons may be wise indeed!). One would prefer that all judgments be obvious and categorical, since that would make life so much simpler, but life is rarely so kind. In most circumstances, we must balance competing, legitimate concerns, here between the therapeutic vs. the adverse effects of medications. Ignoring either to the exclusion of the other might settle the matter for us, but it does so unwisely.

[Stoney]

Here’s the thing. When we’re put on meds, we receive regular monitoring including blood work. We know something is going the wrong way. But once joint damage occurs its too late. Some of the risks that people really worried about is the risk lymphoma
Well that risk is increased from the disease itself.

Look, ultimately you have to make decisions yourself. But you should make the decisions with full knowledge, including what the risks of not using medication are. Understand it’s a systemic disease.

[tntlamb]

Well of course you “keep track of things” we just don’t give the meds more time or control of lives than the disease has already taken. What would you do if you weren’t taking MTX and bit a chunk out of your cheek? Quit eating LOL?

[Kutya]

It is not merely matter of what we "give’ them: this vastly overestimates the power of our wishes: it is also, perhaps primarily, a matter of what they TAKE. I will not be deprived of agency by the facts, but it is foolish not to take cognizance of them.

[Poo_therapy]

I find this discussion really interesting. My own thoughts are almost everyone at the relative beginning of their journey of being medicated for PsA, is utterly thrown by the apparent toxcity of the drugs used to treat it. Most, though not all, have already endured quite a journey to get the diagnosis of PsA anyway. Those who were diagnosed quickly (I was one of them) are in total shock though of the diagnosis, though. So either way, each of us has been dealt with something of a body blow including psychologically regardless.

Those who have waited for a diagnosis are enduring the damage it’s already caused to various bits of their body, and those of us diagnosed quickly are still getting our heads around the fact it can cause such frankly awful damage.

And then wham in comes mxt in almost everyone’s individual experience. There appears to be very few of us who don’t suffer at least initial pretty debilitating side effects from it which appears in addition to the already present horrible effects of PsA. Some though are really lucky and don’t. And some are lucky in that those side effects ease quickly. Some however aren’t that lucky though and truly struggle with the added effect of mxt on them. And of course it’s a slow acting drug so it can take several long weeks or months to actually do anything positive for the PsA.

When that happens some people think to themselves yes it helps my PsA so I can put up with how it additionally makes me feel, and some though just can’t think that.

Throughout all of this time though our individual psyches can feel horrendously battered. And often it’s a long journey then to get switched on to a med that doesn’t produce side effects like mxt can do but also positively treats and/or curtails the PsA.

As others on here will know it took me quite some time to be able to accept PsA needed these types of drugs, that’s the downside of being diagnosed quickly incidentally.

When I took mxt twice, the second time a year later, I simply couldn’t tolerate its side effects, The first time, I’ve no doubt I was a total drama queen about them, but the second time, I entered into taking it in a far better and far more resilient frame of mind. But neither time could I function on any level. So I’m with @Kutya on the need to be cognisant about ‘what they TAKE’. For me it was pointless taking a drug where its side effects made me require something on the lines of 24 hour care, whereas the then effects of PsA didn’t.

On the basis that I was properly congnisant of what it could ‘take’ from me, I was offered another DMARD which didn’t produce any noticeable side effects and which ended up working rather well for a time at least. And we’ll see shortly if it continues to do so as it’s just had something of a blip presently and I don’t know yet if that means it’s simply stopped working.

So for me I couldn’t function at all on mxt but certainly could on sulfasalazine. And when sulfsalazine then worked, boy was I then functioning just coherently. For me I’m eternally grateful I didn’t persist in enduring what the side effects of mxt did to my functional ability, even if that means sadly I’ll never experience its positive effects on my PsA either now or in the future.

I don’t have enough wealth monetary wise to be rendered incapable of earning my living by the side effects of drugs used to treat my PsA which has never stopped me yet of being able to work and remain employed.

I’m eternally grateful to this forum of teaching me to fear the disease more than its drugs, but as @Stoney says we each have to make our own choices. But personally I could never make that decision for a drug that rendered me as incapacitated as mxt did. I don’t see the point of life if it isn’t a coherent one.