Rosen, you are quite right. I should not suggest stopping anyone's medication without talking to a doctor. A quick phone call to a Doctor to check on any side effect should always be the first response. Thanks... I am surprised that you could suffer the mouth ulcers and GI tract ulcers.. Just curious.. did your upper lip swell also?? How long did your mouth ulcers last??
Ulcers aren't necessarily a huge deal. The mouth ulcers lasted until we got the folic acid up to 5mg/day. I also take another form on the day after my MTX, leucovorin, and that helps with side effects.
Kiwi Writer said:
Rosen, you are quite right. I should not suggest stopping anyone's medication without talking to a doctor. A quick phone call to a Doctor to check on any side effect should always be the first response. Thanks... I am surprised that you could suffer the mouth ulcers and GI tract ulcers.. Just curious.. did your upper lip swell also?? How long did your mouth ulcers last??
Hi Rosen, I wonder why my GP didn't suggest that I just "up" my folic acid intake. I am wondering if my swollen lip is not just ulcers but another form of side effect.. The lining of my whole upper lip is swollen, red and painful. Hurts to eat anything hot. Strange really. Seems like more of an allergic reaction... but doesn't respond to the antihistamine I am taking. But I am no expert on mouth ulcers... If my lip doesn't get better over the next few days I will go back to my GP for a check up... In the meantime I will take another 5mg folic acid tablet.. and see if that helps.
Luckily I didn’t have any mouth ulcers - yours sound horrible! Hope the folic acid is helping, but if not, I would go to the doc!
Ulcers aren't always a huge deal, but they can be, and it sounds as if you had something else going on judging by what you've described- mine were more like canker sores.
Kiwi Writer said:
Hi Rosen, I wonder why my GP didn't suggest that I just "up" my folic acid intake. I am wondering if my swollen lip is not just ulcers but another form of side effect.. The lining of my whole upper lip is swollen, red and painful. Hurts to eat anything hot. Strange really. Seems like more of an allergic reaction... but doesn't respond to the antihistamine I am taking. But I am no expert on mouth ulcers... If my lip doesn't get better over the next few days I will go back to my GP for a check up... In the meantime I will take another 5mg folic acid tablet.. and see if that helps.
Well I’ve now had 6 doses of the mtx and the side effects appear to be waning - no headache this week! So far though absolutely no evidence that it’s working at all!! I know it’s relatively early days but was expecting some improvement … 2nd appointment with rheumatologist next week so will see what he says but quite frankly feeling a bit disappointed with the whole thing.
Just read through this thread--I'm always interested in the various PsA meds, even though I only take Enbrel. In October I had a cluster of "bumps" just to the inside of my bottom lip. Thank God they were on the inside because this occurred at the time of our daughter's wedding and it would have looked like the most hideous cold sore ever had it been on the outside of my lip.
Anyway, they felt so weird I couldn't leave them alone-first touching them with my tongue constantly and then biting them. That was a mistake! That made them really sore and my lip swelled up a bit, which thankfully wasn't bad enough for others to notice.
This sounds painful, but to "kill" them I put salt on them. I've always done this for canker sores, and it works great. Not sure if it's a good practice, but just thought I'd put in my two cents worth in case it might help somebody.
Gargling with warm salt water has helped relieve the pain of sore throats for me--wouldn't hurt to get your doctor or pharmacist's advice on it. Of course, they might blow you off because most of them (not all) don't encourage home remedies!
Hi Golfnut,
Sorry to hear that you are not experiencing any relief from MTX.. yet. I lasted six weeks also.. but my GP suggested I stop taking the medication due to my swollen upper lip which appeared to be an allergic reaction. (Which is still bothering me)
I did not notice any significant improvement to my PsA or my psoriasis after six weeks.. however, my psoriasis and aches are beginning to worsen now that I am off the medication.. I have been off the medication for 2 1/2 weeks now,
It is good to hear that your headaches and side effects have finally gone... I was told by my Dermatologist that it would take 6 - 8 weeks before any significant improvement is noticeable.. so you should be seeing improvement any day now.
Golfnut said:
Well I've now had 6 doses of the mtx and the side effects appear to be waning - no headache this week! So far though absolutely no evidence that it's working at all!! I know it's relatively early days but was expecting some improvement .... 2nd appointment with rheumatologist next week so will see what he says but quite frankly feeling a bit disappointed with the whole thing.
Hi kiwi writer - have you arranged a new medication yet?
I’m trying to remain hopeful but if I’m honest I don’t really believe it’s going to work! Still I might be wrong …
It’s incredibly frustrating as I just want to be getting on with normal things and everything seems to take so blooming long.
Hope your aches aren’t causing you too much pain and that you can get something that works for you!
Golfnut, it IS incredibly frustrating to take medication (especially one that makes you feel worse that you did before!) and not see the slightest indication of results. You’ve read “Mind the Gap” in the Newbies’ Guide, haven’t you? That’s exactly where you are, my friend. And unfortunately, there’s nothing for it except being patient. Sooner or later (let’s hope for sooner) you and your rheumatologist will find the key that fits your “feeling better” lock.
None of this is made any better, of course, by the cold that has settled on our part of the continent. Hunker down, stay warm and look after yourself!
The methotrexate didn't seem to be doing anything tangible for me, at any point, but I definitely notice when I'm not on it and in retrospect, looking at pictures taken of my hands during the first few weeks of my having this arthritis, it's helped a lot.
The whole "all the drugs take months to work" thing is probably the most infuriating aspect of this disease, to me at any rate. How tedious! I definitely feel more camaraderie with all the clients I assured over the years with comments like, "all anti-depressants take several weeks to work!" Several weeks, that's supposed to make me feel better?! Now I know how that felt, I suppose.
Thanks seenie and Rosen! I know I have to be patient but god it’s hard. Spoke to soon on the headache front as it’s back with a vengeance…
I’m posting progress for advice and encouragement of course, but also in the hope it might help somebody else who is about to start mtx and is worried about it! I was so scared but despite the headaches etc, it really hasn’t been as bad as I thought… Just wish the darned thing would kick in!
Yup the -28 temperatures and ice storm we had on Sunday certainly aren’t helping!!!
Hi Golfnut..
I have my next appointment with my dermatologist at the end of this month. I live in an isolated, rural area and have to wait until the doctor visits the area. I was hoping to be prescribed Stelera - I have a friend in California who had amazing results.. his psoriasis was gone in 4 weeks.... He does not have PsA... However, in New Zealand, I have to wait until I have tried all the "oral" treatments before I can be prescribed any injections. (Free medical here) However, Stelera is not free under our Medical Health Plan.. Anbrel may be an option.
You might still see some results over the next couple of weeks... what does your Doctor recommend?
Golfnut said:
Hi kiwi writer - have you arranged a new medication yet?
I'm trying to remain hopeful but if I'm honest I don't really believe it's going to work! Still I might be wrong ...
It's incredibly frustrating as I just want to be getting on with normal things and everything seems to take so blooming long.
Hope your aches aren't causing you too much pain and that you can get something that works for you!
Well dose 7 taken!
Have to say that despite my misgivings, swelling and pain is reduced in wrist/fingers significantly. No constant pain anymore just have to be careful not to use wrist! Still getting killer headaches with it but I guess it seems to be working! Also I can now squeeze toothpaste, tie my hair up, lift a cup etc etc
Not taking any painkillers anymore so it doesn’t look like I’ll be stopping it anytime soon (depending on blood tests). Just an update - hope you’re all feeling good!
Fantastic news, Golfnut! And this despite the bitter cold of January.
Keep us posted – I hope with good news!
So pleased for you, Golfnut. So they (the doctors) are right. You DO see positive results 6-8 weeks.... I am sure it will just keep on getting better and better.... Are you drinking LOTS of water.. may help with the headaches....
Golfnut said:
Well dose 7 taken!
Have to say that despite my misgivings, swelling and pain is reduced in wrist/fingers significantly. No constant pain anymore just have to be careful not to use wrist! Still getting killer headaches with it but I guess it seems to be working! Also I can now squeeze toothpaste, tie my hair up, lift a cup etc etc
Not taking any painkillers anymore so it doesn't look like I'll be stopping it anytime soon (depending on blood tests). Just an update - hope you're all feeling good!
Yup it’s good so far but the headaches are killing me! Can’t physically drink anymore water … Seeing rheumy this week so will see what they suggest about headaches!
Here’s hoping you find something that works for you! Has your swollen lip gone down??
I guess you are already taking Excedrin Extra Strength... (I pick up a supply when I am in the USA) the only thing that works for my headaches... Good luck at the rheumy... let us know how it goes..
My swollen lip is finally getting better... less pain and swelling... can't believe it has taken so long to improve.... almost three weeks... thanks for asking....
Golfnut said:
Yup it's good so far but the headaches are killing me! Can't physically drink anymore water .... Seeing rheumy this week so will see what they suggest about headaches!
Here's hoping you find something that works for you! Has your swollen lip gone down??
Not taking excedein - I believe it has aspirin and that is not allowed with mtx.
Back from rheumy who thinks that so far mtx is having very little effect! Must admit, pains have just moved about a bit and although wrist is less painful, feet are killing me! Anyway he’s changed my mtx to injections and upped dose to 25mg a week - yikes - a big increase!
He also said he doesn’t think it’s going to work but to get the next level of drugs I need to have given mtx a good go at he max dose! I’m going to be doing injections myself, although he hasn’t actually shown me how! I’m used to injecting as I’m a diabetic but unsure with these ones as they are not a pen but an actual syringe with needles?? May have to go to clinic to ask them how to do it!!
Hope all are well …
Two thumbs up, Golfnut! I have a feeling that you have a good rheumatologist there. He wants to put this PsA fire out, he doesn’t think the current treatment is helping, and he seems to have a long range plan.
Seeing that you didn’t feel great on your low-ish dose of oral mtx, he maximized the dose but switched to injectable, which is usually well-tolerated. Great move. And telling you that you need to give this drug a good try to get to the next class of drugs is excellent. I’m impressed.
Don’t sweat the injections. Easiest jab ever, especially if you have done insulin! It’s a vial that you have to draw up. (I think someone here once mentioned prefilled syringes, and that seems like a colossal waste of money to me.) Ask you pharmacist to supply insulin needles, as they are very fine.
Anyway, I got my supplies home, and realized that I didn’t know how to do it. Duuuhhhh… so, what else to do, but Google? I’m starting to think that there’s nothing you can’t learn to do on the internet –
http://rheuminfo.com/medications/methotrexate/inject-methotrexate
No need to go to the clinic, this is a piece o’ cake. And most likely you won’t have any ill effects from it.