Cimzia & Methotrexate

[mullyjl]

Question to those out there on Cimzia injections with Methotrexate injections. I take Cimzia injections bi-weekly and 25mg Methotrexate injections weekly. Currently, I have just done my 3 methotrexate injection. Do the side effects get any better? I am ghost white, nauseated, wiped out (literally slept over 12 hours in one day), and massive brain fog.
Also, how long before anyone feels the effects of it? I was just on Cimzia for over a year and developed abdominal abscesses that required me to have an loop ileostomy placed in late September of last year. That is why my GI is trying Methotrexate with the Cimzia.

NOTE: I also, have a j-pouch and want me ostomy reversed. So much to ask...anything will be of help.

 

[Ian_H]

Can you talk to your doctor about some other treatments? Remicade and imuran seems to have minimal side effects for me. I have heard that Imuran can be better tolerated than Methotrexate. Is a cimzia imuran combo possible?

 

[mullyjl]

I cannot take Remicade as I am allergic and I can't take Imuran as I get pancreatitis and with 6-MP I get bone pain. Humira quit working. So this is pretty much maybe my last option.

 

[Ian_H]

You could just need to wait and see if the side effects taper off. I did have side effects from Imuran when i started, nausea joint pain mainly, but It subsided after about 4 months. I wish I had better knowledge for you!

 

[mullyjl]

Thanks.

 

[KayleighMeek]

Hi you sound similar to me on the meds front I developed antibodies to remicade and also had pancreatitis from aza. I'm on cimzia and started methotrexate 20mg probably nearly two months ago I still feel like I have a hangover most days and that's with increasing folic acid already, if you haven't asked about increasing it may be worth it as it can help with some of the side effects. I'm also on steroids at the moment so I'm unsure if the methotrexate is working as its meant to I'm in a bit of a waiting game.

 

[m86]

Kayleigh - I had the exact same thing happen me with Aza. Was on a drip for 48 hours after induced pancreatitis. I agree about MTX. I feel tired so much. My third week now. Folic acid on day three. I'm wiped out. Today they called me in for bloods again because my haemoglobin was way too low yesterday )78) bit after another check I was apparently at 127. I was worried for a while that I'd have to look at other options after just starting this one!! Next week is my last week supervised self-injecting, then they'll give me all the gear to prod myself weekly. Oh joy. Does the fatigue ever improve? When did anyone notice an improvement overall? My BMs are okay but I'm suspicious that my tummy ain't 100%. Appetite normal. Mood generally fine but brain fog, as you described. Put weight on because I'm too tired and unmotivated to exercise but bought a Jawbone bracelet to make me more aware of my sedentary nature (also having a desk job doesn't help!) I'm 6'5" and 10 stone 11. SO great to read everyone's posts and your experiences. It's a roller coaster , Crohn's. xx

 

[mullyjl]

Is abdominal pain normal? It started last night and it's so bad I had to take an Vicodin but it didn't help so 4 hours later (30 minutes ago) I took a 10mg Oxycodone. I haven't had abdominal pain since September when they brought me in for surgery and created the loop ileostomy and drained two abdominal abscesses.

 

[mullyjl]

Also, the fatigue is unbearable. I may ask to have Folic Acid increased from 1mg a day to something stronger.

 

[crohnsinct]

Bith if my daughters report that side effects did get better as time went on.

Mtx can take awhile to get to therapeutic levels. Our doc quotes 12 weeks but you should see slight improvements after about 6-8 weeks.

You could increase folic acid. I know some parents here say their kids have had to. Paging maya142 as her daughter also had to use a rescue drug...starts with an L.

In the end mtx wasn't enough for my younger daughter but that is her only therapy right now.

 

[Maya142]

My daughter had awful side effects with MTX: dizziness, nausea, vomiting, headache, fatigue - you name it! She was stuck in bed for two days every week.
Here's what helped us:

Zofran for nausea
Extra folic acid
Taking the shot at night so she slept through the worst of it
Folinic acid - which is called Leucovorin here. In our experience, rheumatologists know of it but GI's don't seem to use it.

Eventually, it wasn't enough for my younger daughter and she went off MTX. My older one is still on it but she only had mild nausea.

Good luck!

 

[m86]

Thanks for all the feedback. Had a few bad days recently. Just had to break down and cry. Sick of feeling tired and zombified. My gastro nurse said there's nothing they can really do about the fatigue, like you guys stated, it takes a while for therapeutic effects to kick in but she was encouraging and empathetic. I'm on 10mg folic acid taken 3 days after injection. I'm going to follow everyone's advice and take it when I get home from work to (hopefully) sleep through some of the initial nausea etc. Right now it's at 9am Thursday. I had some blood craziness too last week: haemoglobin was very low at 72 , then had them redone (rose back to a more normal 127). I very nearly was taken off MTX but my consultant is happy for me to continue. Nearly 4 weeks in. Roll on remission and feeling better! I can't tell if I've completely stopped flaring because I've now got other side effects. Ok rambling now. Be well everyone. On another note I found an interesting article on a new vaccine to help Crohn's. I'll post it in a more general thread. [emoji119][emoji324]

 

[KayleighMeek]

Hang in there m86 it's tough but so are us crohnies and its ok to have those days where you need to get all the crying out the way.
When I was on methotrexate before I remember it taking a long time for the side effects to stop but they did eventually. Ive noticed after I do my methotrexate I get stomach ache and more blood again which you would think it should improve. I skipped my injection last week I just couldn't face it and the horrible feeling after but will be back on it Friday.