5th Week on MTX and what the???: Hi all! I love this... - NRAS

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5th Week on MTX and what the???

turtlemom2 profile image
15 Replies

Hi all! I love this place! I call it my online support group. Ok This is my fifth week on MTX and last week was not so bad. I thought i was getting better. But this week it hits me like a mack truck. I take it on Saturday evenings before bed. Now I feel tired so far this week and I can feel my nerves or muscles give sudden sharp shooting pains. It always causes a mild flare up when I take it in my joints for the first couple of days and I know it takes 3 months to see if it will work. I just wonder why the 5th week is so far the worst. Any ideas or experiences?

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turtlemom2
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sylvi profile image
sylvi

Have you spoken to your rheumy? Also when do you take your folic acid again speak to your rheumy give them a ring and see what they say darling. xxx

turtlemom2 profile image
turtlemom2 in reply to sylvi

I haven't spoken to her. She looked at my blood work and she said I was fine and that was it. She would tell me she has nothing else for me as I had severe edema with the plaquenil. A part of me wants to stop taking anything and just deal with the pain but the pain gets so bad that I can't move and I worry. I worry about what they say about RA if it is left unchecked as it can start acting like Lupus and possibly attack your organs. So not taking it I am not sure is a viable option.

turtlemom2 profile image
turtlemom2 in reply to turtlemom2

I take my Folic Acid every morning except the day I take the MTX on Saturdays.

Dobcross1 profile image
Dobcross1

Hiya I was the same! Weeks 5 and 6 for me every time the dose increases bring new 'experiences'! At 10mg it was mouth sores and at 15mg red itchy spots! It's a surprise every time lol. It did pass though. And yes, I am worse for random pains the day after I take it every week. I'd mention it all to your rheumatology dept though. Good luck and hope it works for you.

precious123 profile image
precious123 in reply to Dobcross1

I’m on 10 mg a week and I have had mouth sores. They are clearing up now tho. Took my 6th injection last night. I do feel rough the next day also. However this is the best I have felt in years. I have been through all of the drugs including infusions and I have been on methotrexate before and had to stop due to liver enzymes/issues. So I’m praying I don’t gave to stop this time. I go back on the 31st to see my rheumatologist. He may increase the dosage or he may leave me where I am if it’s not causing any issues with my liver. So I’m hoping if he does I won’t have any of the itching /rash. How are you doing and how long have you been on methotrexate

Hugs gentle ones

Peggy

Dobcross1 profile image
Dobcross1 in reply to precious123

Hi Peggy I really hope MXT works for you this time around. It definitely takes some getting used to! I had 6 weeks on 10mg and I've had 11 of 15mg. I had 3 weeks at the beginning of April when I felt great and thought I'd cracked it but seem to have gone backwards these last few weeks with swollen sore fingers and painfully swollen ankles - I've just been on holiday in Scotland for 10 days and my ankles really put a damper on it. I'm see the Rheumatologist next Tuesday so think he might increase me to 20mg or maybe add something in.. but I'm still hoping MXT will work for me so fingers crossed (well if I could cross them!!😂). Good luck 😁

precious123 profile image
precious123 in reply to Dobcross1

I will definitely be interested in what your doctor has to say. Please keep me posted as I think my doctor might increase mine when i go back. I appreciate you talking with me. I hope you have an awesome pain free day.

Peggy

Dobcross1 profile image
Dobcross1 in reply to precious123

You too and thanks!

precious123 profile image
precious123 in reply to Dobcross1

Hey I think you may have told this before but not sure I took my injection last night. I have noticed I have a headache and feel like crap the next day which is today. Lol. All I wanna do is lay around because I feel weak. Is that normal? Do most folks have this issue?

Thanks again for talking with me

Peggy

turtlemom2 profile image
turtlemom2

Update on MTX now week 6. As I stated before I take it every Saturday evening. I took it this Saturday and that would be my 6th dose at 15 mg weekly. I cannot describe to you how badly this dose made me feel. Today is Tuesday and I am finally eating with not too much sickly feeling in my tummy. My bones ached so badly like I was coming down with the flu something awful that I wanted to cry. I am also tired all the time but when I lay down to rest I cannot fall asleep. What is wrong with me and I am NOT looking forward to the 7th dose. I thought things were worse in the beginning and then tapering off why now is it getting bad ?

JFlay profile image
JFlay in reply to turtlemom2

Hi, I hope you're feeling better?

I am on my 5th month of MTX tablets 15mg my joint aches, pains and stiffness have improved but side effects-wise they are getting worse. I feel like I'm being slowly poisoned 😟 and thinking to stop taking it.

turtlemom2 profile image
turtlemom2 in reply to JFlay

Yes! I feel like I am being poisoned! perfect description! Ahhh it's pretty bad. Suddenly I am having trouble now urinating as well. goody.

JFlay profile image
JFlay in reply to turtlemom2

I decided to ring my rheumy clinic about side effects of MTX and they told me to stop taking it! so I have! I see them again next month to decide what the next plan is 🙄

turtlemom2 profile image
turtlemom2 in reply to JFlay

I ran out of the MTX as my Rhemy left for vaca and I cannot get in to see her until the end of July. I was increasingly worried about it as for some reason I was getting more achy and it was so severe that it put me to bed several times. Ever been so achy you knew something was not right and it flat out scared you? That was me. So, I ran out of MTX and delayed requesting it and did not take it on Saturday (my normal time) and I am tired but feel much better in general. Can someone tell me why the longer I take MTX the worse I get?

JFlay profile image
JFlay in reply to turtlemom2

I'm not sure? I know it is a long acting drug... it takes a long time to work and a long time to leave the system. I have missed 3 or 4 (?) doses of it now and feel much better in myself but the stiffness, aches and pains are slowly creeping back (although they hadn't really gone). I see my rheumy in 3 weeks time too, we will both have to see what they say then 🙄

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