Methotrexate question

[heathersmum]

Hi everyone,

I am currently taking 17.5 mg of Methotrexate,I am still in agony with my joints and suffering very bad headaches.

Does this mean that the Methotrexate isn't working?

Xx

[nomoreheels]

It may be as you're titring up your Rheumy is waiting to see how you respond to this latest increase before dedicing whether you need something else added or if it's not for you. When exactly was the 2.5mg added? It may be that you may need to wait a little longer to see if you respond well to this increase as well, some find it's a little longer than the 12 weeks often suggested. What does your Rheumy say about your pain? Have you been prescribed an NSAID yet, they can help quite a lot I've found especially in the beginning, helping to tackle the inflammation whilst the MTX works on suppressing the disease itself.

How did your PIP assesessment go on Friday?

[heathersmum in reply to nomoreheels]

Hi nomoreheels

Thank you for replying,

I haven't had a headache all day. I have just sat down and now I can feel one coming on and to top it off I have just been sick.

Tomorrow I will call my rheumatologist nurse to see what she thinks.

As for my pip assessment on Friday , that was cancelled by them and moved to the 25 th June.

[Livingston in reply to heathersmum]

Headaches & nausea/vomiting can be side effects of methotrexate but can be caused by lots of other things too. Have you been taking your antidote? - folic acid/calcium folinate?

[dobsey]

You need to talk to your rheumy

He can eventually up it to max 25mg and it can usually take longer than 3 Months to kick in fully

I had to stay on it for about 12 months before going on to bio meds

Do you have RA in your neck as that can cause bad headaches

They also have to monitor your liver whilst on it , monthly blood tests , are you having those ?

They need to find the right dose

for you , takes time

My rheumy put me on 20mg straight away then upped it to 25 mg after 3 months but everyone is different

Sorry about your pain it never goes away fully

NHS say that have to try with methotrexate for at least a year apparently as bio's are expensive

Are you on sulfasalazine and hydroxychloroquine and pain killers ( opeuts) as well

As you don't say !

[heathersmum in reply to dobsey]

Hi ,yes I have blood tests every two weeks. I take Tramadol for pain when it gets really bad and also take codeine and Paracetamol for pain but not all at the same time.

My pain s are in my neck my feet,wrists ,elbows,fingers,behind my knees . I don't like to moan but feel terrible most of the time.

Never mind. I always tell myself there are a lot more people worse than me.

Xx

[dobsey in reply to heathersmum]

I take targinact

They are controlled drugs but are slow release

Take 2x 10mg twice a day

They are opiates and work well , I take them every day

Speak to them to see if they will put you on something like that

Good pain killers

Don't worry about mentioning what pains you have we all understand

Dam horrible thing this is , such a shock to your whole life

People on here are very supportive

You just need to get the docs to give you better pain killers

[Azabat in reply to heathersmum]

Heathersmum, It isn't moaning here. It's the truth, and this is one place where it is safe to be as real and vocal as you need to. I haven't found codeine helpful at all, but the mtx helped me get some improvement. I found that the addition of folinic acid/leucovorin has helped mitigate the side effects for me, but I still get headachy and nauseous to a certain extent. Gentle hugs, and make sure your rheumy knows how you're feeling. I am honing rheumy-pestering as a valuable skill I hope you get some relief soon!

-Bats

[heathersmum in reply to Azabat]

Hi Bat,

Nice to hear from you.

I do take folic acid two days after Methotrexate day.

Spoke to my Rheumy nurse today. She said that she will put me on Methotrexate injections and I am also to drink lots and lots of water.

I am due to see her on the 20th June so we will see what happens then.

Take care. Xx

😁🌷

[nomoreheels in reply to heathersmum]

There's room to increase your folic acid as well so if the injections don't ease your headaches adequately it would be worth asking your Rheumy nurse if you could increase it to more days. I started on just the day after & then the day before & the day after when I started on injections but it's only since taking it every day except the day I inject that my side effects eased lots.

[heathersmum in reply to nomoreheels]

Thank you for your reply .

My nurse is due to phone,I will ask her.

Xx

[Ali_H]

Hi,

Looking at your posts it looks as if you have been on mtx for less than 3 months and it may take more time for the med to get up to speed and/or you may need a higher dose. I am on 20mg and have been since late December (from September to December I steadily built up from 10mg to the current 20mg).

Re the headaches are you drinking loads of water (and some more)? Also, I was taking naproxen (500mg twice a day) and had chronic headaches which my GP rightly identified as being caused by the naproxen. On his suggestion I dropped to 250mg as required (max 2X day) and now no headaches but I could afford to effectively drop my NSAID as I do not get a tremendous amount of pain (usually) with my RA and on the occasions where I have taken my mtx for more than three days in a row the headaches have crept back in - my GP was also keen for me to drop the naproxen as much as possible as I have a slight heart murmur and NSAIDs have their risks in this area so for me the less I take of these the better.

Lastly have you looked at things in your diet that may be contributing to inflammation and joint pain. I've experimented over the past 6-7 months and I now know that it helps me to keep my gluten, cow's milk based dairy, tomato, potato and bell pepper intake down to a minimum (I don't eat the last three at all nor chilli peppers any more and I've switched to goats milk ... Yogurts don't seem to affect me so I still tuck into these ).

I hope things get better for you soon

All the best

Ali

[helixhelix]

I started just on MTX and by itself it did help, but not enough even when I reached a higher dose, so had other drugs added in. I did get headaches to start with, but they went away after a few months. All in all it took about a year after diagnosis to get this under control.

You don't say whether your blood results are improving? if your ESR or CRP are dropping then it probably is starting to work - just a bit slowly! Generally the rheumy will want to give it a good 3 months at an effective dose (ie 12.5mg or more) before changing treatment. But if it really isn't doing anything then start pushing for a meds review as there are other things to try. Relying on pain control is not the best long term solution.

The NICE guidelines are that you have to have tried and failed on several DMARDS (including MTX) for at least 6 months, and have a disease activity score of over 5.3 before being considered for biologic drugs. But really lots of us, like me, do really well on the traditional drugs like MTX so they aren't a second best choice at all.

[Braecoon]

I am on 7.5mg MTX injections weekly for 6 weeks now and have been suffering increasing headaches can't say whether they are just headaches or if they are migraines. I have to take co-codamol at night otherwise the severe headache wakens me up during the night. I am not sure if my jaws are playing up with RA but the skin in front of my ears is very tender, so whether this is the cause of the headaches - who knows! I am taking my Folic acid and keeping myself very hydrated.

[heathersmum]

Hi thanks for the reply.

My rheumatologist nurse has said that she will put me on MTX injections because I keep being sick and suffering terrible headaches and chills.

I take Amitriptyline,Co codomal,Tramodol,Folic acid,

I am a Dental Nurse. If you are clenching at night then that can give you a sore jaw and headaches. If you are then mention it to your dentist.

Xx