Good to get an update... I have my appointment with my doctor next Tuesday... so maybe I will be on the same path... My doctor checked my Exederin ( with aspirin) and said it was OK to take with Mtx... maybe that is what caused my allergic reaction....
My lip is still a problem.. so will be interesting to see what the doctor says.... It has been three and half weeks since I stopped taking mtx.... I have just had three days of complete and utter exhaustion... sleeping a lot during the day. which is unusual for me.. I can feel my PsA symptoms getting worse... seems as though the Mtx took 3 weeks to get out of my system - not 72 hours like I was advised...
Keep us updated with your injections of mtx... Hope it works wonders... !!!
Golfnut said:
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!!
Thank you both for your encouragement - he seems experienced (the rheumy) but I was in and out in 10 minutes and I actually did have some things I wanted to ask!!
I checked online and it does seem easy to inject - I have pre-filled syringes as the nurses here won’t fill them for you.
I’m so sorry to hear that your lip is still bad - seems like something weird is going on with it! Very good that you will be seeing the doctor soon - hopefully they will get you on something else. I’m sorry you’re feeling so tired - it’s awful isn’t it? I’ve been napping every day as I just can’t stay awake… At least you know the mtx was doing something so if they could only sort out that lip! Have you taken anti-allergy Meds??
I have been given folic acid x 5mg to take every day as this seems to be dealing with the headaches. I realize I’ve been lucky to see a specialist quickly but god - everything seems to take forever - don’t know how you all cope with it. I came home and had a good cry for 10 minutes then picked myself up and thought just get on with it!! Hope you’re all getting on with it too
Let me know if it stops the headaches please. They’re unbearable!! Haven’t heard back from my rheumy yet and thinking of switching to injects if it helps. Dropped dosage down to where I had been tolerating it but now the migraines still continue.
Rachael - My headaches are better now that they have put me on 5mg of folic acid everyday but I have had no side effects since injection yesterday. Will let you know how it goes. They are a nightmare aren’t they?
Most people lose the side effects when they switch to the injectable form of mtx. I don’t know why docs don’t just ask “Are you afraid of self-injecting, 'cuz if not, that’s the best way to take this medication.” When my first rheum said I would be going on mtx, I asked for the injectable (having read about the side effects, and also the fact that some think it works better when injected). Her answer was “No, we always start with the tablets.” Oh boy, that should have been my first clue. Three months later, when the pills hadn’t helped, she switched me to injectable, and waited another three months. Meanwhile of the joint front …
Taking folic everyday regularly. Water I think been good at but going to try harder just to be sure. I have a great habit of everytime I pass a water dispenser at work which we have a lot of them and drink a cup weather I feel like it or not. Started this in summer because I work in areas that are on average 20 deg warmer or more than outside which means I’d its 90 deg it can easily get 110-120 deg with heavy coveralls on to top it off. Very extreme so lots of water is a must! Thanks for responding everyone. Going to see about inject she mentioned it if I didn’t tolerate the oral pills. Talked about nausea, mouth sores pregnancy but failed to mention headaches so wasn’t sure if it was normal or not.
Well issue on headaches are over for now. Rheumy just took me off methodextrate and sending info on my new options. Hopefully something that agrees better for me. Its one thing to miss work for pain but another to miss work due to meds to take it away. Honestly my boss would have rather heard I was gone for the flu than medication issues and he made that quite clear. Sad part is I can tell it was starting to work, predisone was off the menu but that headache and the crying just not worth it for me. Thanks again for the advice helped calm my nerves about alternative ways if I had to stay on it.
We’ll see not sure what’s coming yet. She did order more labs said I have to wait for a negative for tuberculosis before I can start what ever it is.
Hope sticking with mtx works for you. Not 100% sure if it was truely working or if my flare finally stopped. When I said it was working I certainly didn’t mean I felt great just that my back was easing up and the fatigue was a little less. Did started going to bed an hour earlier most nights which seems to help some too.
At least now I can have one or two drinks on Superbowl before I start the next round. Lol!
I’ve now had 2 injections of the mtx - third tomorrow and am happy to report no side effects - swelling in wrist has gone although limited movement with it and still some pain. Haven’t even taken a folic acid today as headaches seem to have just gone now that I’ve switched to injections! Although swelling has gone, wrist still felt very hot but over the last day or two that is subsiding too!! Am just waiting to see if it continues!!
Spoke too soon - killer headaches are back and I’ve also got bright red eyes! Gonna ring rheumy Monday and see what he says as headaches are so bad I feel sick with them! See you’re due to start enbrel Rachael - good luck!
Oh Golfnut… I am so sorry to hear about the headaches returning… Sometimes I wonder if we are not better off going off everything… but then, I am now in Ventura CA with just my psoriasis ointment and my psoriasis is chronic and my PsA is definitely getting worse… but the weather is amazing and I am enjoying civilisation after living in isolation in rural NZ… Hope your rheumy has a solution..
Cheers.
Golfnut said:
Spoke too soon - killer headaches are back and I've also got bright red eyes! Gonna ring rheumy Monday and see what he says as headaches are so bad I feel sick with them! See you're due to start enbrel Rachael - good luck!
I can’t believe you’re still not on some proper medication yet kiwi writer! Blimey how are you coping?? Very exciting for you to be somewhere new though - wish I was as it was minus 31 today and very unpleasant…
I am scheduled to see a rheumy in a couple of months when I return to NZ. I am guessing that I will know a lot more about my PsA then. Where are you at minus 31???? Ow… it is about 85 deg here in CA… too hot !!!! Can't believe it is wintertime here!!!
Golfnut said:
I can't believe you're still not on some proper medication yet kiwi writer! Blimey how are you coping?? Very exciting for you to be somewhere new though - wish I was as it was minus 31 today and very unpleasant...