Methotrexate side affects

[cowgirlnz]

Hi. My 6 year old son has been on methotrexate injections for 7 months. At first we saw no benefits or side affects. A month ago however the Crohn's symptoms started to ease, and he now seems to have gone into remission for the first time EVER. He's eating really well and even growing. But unfortunately at the same time he's developed some worrying psychological symptoms. He's very anxious and his right hand won't stop moving. He's constantly making little circles - I'm not sure if this is a tremor or some kind of OCD behaviour. He's aware of it, can stop it on request, but it starts again very quickly. Worse when he's tired or upset.
I'm wondering if any adults have had experiences of side affects on this medication - particular anxiety or tremor??
We see his doctor next week. He'll be very pleased that the Crohn's symptoms have gone, but as a mother I'm terrified about what else this drug is doing to him.

 

[Dexky]

G, it's good to hear Ranger's crohns is finally behaving! I'm sorry about the other! I hope it has an easy remedy. You and Ranger need a break for crying out loud!!! Good luck!

 

[cowgirlnz]

Yes - it'd be wildly unfair if the one thing that's actually worked for him is causing these problems!

 

[beth]

I'm afraid I wont be very positive about methotrexate, I was on it for 4 months or so and the whole time was a nightmare. It made feel like a zombie for two days after the dose, and just awful the rest of the time. In the end it gave me a mild form of methotrexate pneumonitis and I was very thankful to be taken off it. I wouldn't be surprised if caused anything, it's very strange drug.

Hope it is unrelated and the little guy can enjoy a period of remission.

 

[Dexky]

Hey G, have you mentioned any of this to your GI? What does he/she say?

 

[cowgirlnz]

Mark, yes, I've spoken with the GI and he's arranged a consultation with a neurologist, so I'm guessing that some sort of neurological side affect isn't unheard of. Plus this week he's having blood tests - once the tests are all in we'll meet with the GI for a full review.

It's a little scary. Over the course of a week Ranger's gone backwards with his school work too. Getting simple equations wrong and writing letters back to front. (Even writing his own name wrong!)

I'm not sure how this drug works, but if it builds up in the system, I have to wonder if, when reaching a therapeutic level for Crohn's it's also reached a toxic level for other parts of his body.

 

[Dexky]

Sorry you guys are going through this G! I hope it's not serious!!

 

[beth]

Getting simple equations wrong and writing letters back to front. (Even writing his own name wrong!)

Sounds familiar. That's the kind of zombie effects I had.

 

[cowgirlnz]

Beth - thanks for your comments. It's always good to hear an adult's experience of this kind of thing - trying to figure out the significance and connections of symptoms in a six year old can be hard!

 

[cowgirlnz]

A few weeks on now - and I thought I'd update this thread in case anyone else is researching this medication. Ranger was checked by a neurologist who assured us that his odd hand movements are not in any way related to the meds. More of a behavioral tic that he should grow out of. He came right with the other symptoms too, and has continued in remission for the last few weeks. Actually his health now seems great - he's tolerating more foods, lots of energy and has grown an amazing 4 cms during this time.
The injections are still hard work, but overall, we're very happy at the moment. In fact this is probably the best his health has ever been in his life. So, for now, we'll trust the doctors and the medication and hope things stay good.

 

[Dexky]

I'm sure the cost/benefit of the injections is well worth the struggle. So glad to hear Ranger is getting the opportunity to be a kid again!!