Methotrexate by injection

[staystronglivelong]

Hi All, sorry I've not been on this forum as much as I'd like to but I have trouble assessing it from some computers (don't know why that is), hence I'm on a computer at work that will actually assess this site.

My husband Mark has WG - He is doing really well, the ENT wanted to discharge him but he said NO. So did his rheumatologist. Mark is having 25mg Methrotrexate weekly by sub-cutaneous injection. He is taking Folic Acid & Calcium D daily and 3.5mg of prednisolone which his rheumy is slowly hoping to reduce to 0 - eventually of course. Mark was on methotrexate orally but it made him feel so nauseous that he decided to try the injection. He does still get abit of nausea when he's taken it and gets a bad headache after his injection. Does anyone else who injects get a headache after?:biggrin1:

[Sangye]

It's good to see you. I'll let others comment on the mtx, but I just wanted to say that someone with Wegs should NEVER be discharged from a doctor's care when they are still being treated. Assuming he's doing well, his docs should cut down the frequency of check-ups and order periodic lab work done to monitor the disease. If someone were in complete, drug-free, no-Wegs-symptoms remission for several years then okay-- they can stop the check-ups and labs unless they feel symptoms creeping back.

[pwc51]

I am on a weekly 15mg mtx injection (Calcium D and 5mg pred daily / folic acid and alendronic acid once per week plus the ubiquitous blood pressure tablets).
Much better than the oral version but I still feel somewhat nauseous for up to 2 days after the injections. I have never really associated headaches with the medication - sometimes I am a bit thick headed, hardly a true headache, and I am not sure about the timing. I will monitor over the next couple of weeks to see if there is a pattern.
My Rheumy checks me every 4 months (I think he likes WG patients as we are few and far between and a challenge compared to the 'more routine' arthritic patients!) and I insist on blood tests every month, to catch any surprises.

[Dryhill]

Like Sangye, I am surprised that a doctor wanted to discharge you when you are not in remission. I have the same doctor as PWC51 and he assured me that when/if I get into remission he will want to keep a regular check on me for some years to come.

Jim

[Dirty Don]

I am in remission, although taking MTX orally, and did get nauseous afterwards. Rheumy had me split oral dose in two, 12 hours apart, seemed to work fine. No more nausea. As for discharge, ain't happening...rheumy, in a lighthearted way, informed me that we will be friends for many years to come! So be it...!!

[Dryhill]

I am in remission, although taking MTX orally, and did get nauseous afterwards. Rheumy had me split oral dose in two, 12 hours apart, seemed to work fine. No more nausea. As for discharge, ain't happening...rheumy, in a lighthearted way, informed me that we will be friends for many years to come! So be it...!!

Don, I like your doctors comment about being friends. I get on really well with my GP and my Rheumy and I appreciate the close relationship we have formed, it definately gives me confidence in their decisions.

Jim

[Dirty Don]

Don, I like your doctors comment about being friends. I get on really well with my GP and my Rheumy and I appreciate the close relationship we have formed, it definately gives me confidence in their decisions.

Yeah, me too...it happened just cuz I was joking around one visit...she'd laid the 'news' on me about all the possibilities of WG, and said we'd be 'friends' for quite awhile. She's a very studious, but good hearted person...and always ahead of the game...makes me feel so much better about being in her hands.

[Debbie C]

I was told my by rheumy at Cleveland Clinic that I am also in remission but I don't see how I can be ,on my last ct scan I still had a nodule in my lung...it was getting smaller yet still there. So I don't know how he call say that. He put be on 15 mg MTX a week,folic acid 3-400mg a day and reducing my pred,next Sunday I'll be down to 5 and holding there till I see him.But I was getting terrible headaches,like someone was stabbing me in the head with a knife so I called up there last week and he in on vacation until tomorrow but Dr. Forte who is covering for him told me to stop the MTX. So I didn't take it last week. Well today I felt so weak,I took a nap for about 3 hrs. I then got up and showered and brushed my teeth.And since I've had a sore thoat and chipmunk cheeks for the last three days,I looked and I have a black spot on the inside of my cheek which I used to get when I wasn't in remission.So I think this crap is back or never even left. I'm going to call him tomorrow and probably go back on the MTX and just hope I don't get those headaches back.Soooo that's how my day was...I hope I answered the question about MTX and headaches !!!! The thing is I take it in pill form not injections.

[Dirty Don]

I take it in pills also, but have been told it does not fit all...was close to injection as mtx all at once made me nauseous. Have since split dosage in half, 12 hours apart & nausea is gone. Also have been told that mtx does not work for all and the next step, for me, would be rituximab.

[staystronglivelong]

It's good to see you. I'll let others comment on the mtx, but I just wanted to say that someone with Wegs should NEVER be discharged from a doctor's care when they are still being treated. Assuming he's doing well, his docs should cut down the frequency of check-ups and order periodic lab work done to monitor the disease. If someone were in complete, drug-free, no-Wegs-symptoms remission for several years then okay-- they can stop the check-ups and labs unless they feel symptoms creeping back.

Hello Sangye, how are you? What treatment are you on? Was it ritiximab you were taking and it didn't suit you too well? Mark is in remission. He was diagnosed July 2010 and told he was in remission nov 2010 after being treated with cyclophosphamide. Then they put him on methotrexate orally, but the nausea was really bad - hes been on the injectable mtx since january. It was the ear, nose & throat that wanted to discharge him and he said no but so did his rheumy. Whenever the ent or the rheumatologist want to spread his appmts out over longer periods of time he won't have it. Insists on seeing them every 2 months or so. What I really hate is if he gets a cold or flu or something, how on earth do you know if its the wegs sneaking back?

[staystronglivelong]

I am in remission, although taking MTX orally, and did get nauseous afterwards. Rheumy had me split oral dose in two, 12 hours apart, seemed to work fine. No more nausea. As for discharge, ain't happening...rheumy, in a lighthearted way, informed me that we will be friends for many years to come! So be it...!!

Hi Dirty Don, Thanks for your replies. Glad to hear you are in remission! Thats interesting, they never tried spliting Mark's dose to relieve the nausea. And its good that your rheumy is nice.

[staystronglivelong]

I am on a weekly 15mg mtx injection (Calcium D and 5mg pred daily / folic acid and alendronic acid once per week plus the ubiquitous blood pressure tablets).
Much better than the oral version but I still feel somewhat nauseous for up to 2 days after the injections. I have never really associated headaches with the medication - sometimes I am a bit thick headed, hardly a true headache, and I am not sure about the timing. I will monitor over the next couple of weeks to see if there is a pattern.
My Rheumy checks me every 4 months (I think he likes WG patients as we are few and far between and a challenge compared to the 'more routine' arthritic patients!) and I insist on blood tests every month, to catch any surprises.

Hello pwc51 thanks for your reply. Mark is on all that (calcium, folic acid alendronic once weekly). He'd agree with you that he doesn't feel very good for a couple of days after but better than the oral version. I wonder if Mark's dose is abit high ( you have 15mg weekly, mark has 25mg weekly ) Sometimes I wonder if these doctors OVER treat with these drugs - however how do I know, they must know better than me. Mark is down to 3mg pred daily and has felt abit like some symptoms returning, so he might struggle to get off the pred I think. Mark's rheumy said he'll be on the mtx for FIVE years - is that the norm everyone out there?

[Hammy8241]

Been on 25mg mtx injection for past two years and yes, I often do get a mild headache in the evenings (Inject in mornings). Try not to do too much injection day as energy levels fall a little too.

[Al]

I can't speak to the methotrexate issue; since my major involvement is with the kidneys, I can't take that drug. But I want to comment about the "R" word.

Remission is a sort of relative thing. Mostly, it just means that there is no current disease activity, not that one no longer has the disease. WG is for a lifetime, so far as current medical knowledge is concerned. Flares can happen very fast, and regular bloodwork is critical. So I am very surprised that Mark's doctor would discharge him. Still, it is great to be in remission, whatever the definition of the word is!

Al

[drz]

I can't speak to the methotrexate issue; since my major involvement is with the kidneys, I can't take that drug. But I want to comment about the "R" word.

Remission is a sort of relative thing. Mostly, it just means that there is no current disease activity, not that one no longer has the disease. WG is for a lifetime, so far as current medical knowledge is concerned. Flares can happen very fast, and regular bloodwork is critical. So I am very surprised that Mark's doctor would discharge him. Still, it is great to be in remission, whatever the definition of the word is!

Al

One definition I have been told was even broader, remission meant that the disease was under sufficient control so that no new or additional treatment was needed. In my case the first time I heard it was when the current meds were working well enough to reduce the Wegs so no change was necessary, my labs were looking better, and my symptoms decreasing--not that they were entirely gone. The other end of the spectrum is to be drug free with no evidence of GPA activity or symptoms. That is the one we all would prefer but any kind of remission is to be preferred to an active activity of big Wegs flare.