Methotrexate

[celiacallum]

Has anyone got any experience of taking methotrexate? I have only been on methotrexate for a few weeks. My consultant in not certain I have PMR and I had a bad reaction on steroids. I have had a PMR diagnosis for at least five years. I do not have giant cell symptoms.

[trish29]

Hi celiacallum, I,m trish29 and took methatrexate a few years ago for quite sometime. You don't say if you have any side effects yet but it,s probably early days, and do you have to go up on your dose every week or so? I was unfortunate that it made me very sick so eventually had to come off it .I hope it works for you as in my case I have a very sensitive stomach and couldn't take Azathiaprine either. Did you have to take a high dose of steroids over the last 5years best wishes trish29

[celiacallum]

I have only managed to take steroids for a very short time. (tried three times). I get almost manic on them, cannot sleep, sit still, read, watch TV, concentrate, i feel i am going mad, etc. I am due to increase methotrexate next weekend. So far no sickness just a sore tummy. Not too bad as side affects go.

[trish29 in reply to celiacallum]

Hello Celia. You are having a lot of side effects, if you have more side effects when you go up on the methatrexate please get back to your gp for advice ! I know a lot of people that have taken this strong medication and not many have been able to take it

Sickness and stomach pain is usual symptoms when you take it. I hope you improve trish29

[bowler]

I was on Methotrexate for just 4 weeks, and was really sick with it, I spent most of that time in bed, I also had panic attacks, and chest pain, which put me in hospital over night, and like you with the steroids I thought I was going mad.

It's like the prednisolone I have been taking for 14 years, my body still has problems coping with the side effects of them , especially when I am having a flare of GCA and have to go on a higher dose.

I am on a higher dose at the moment and having the usual side effects, and only been sleeping a couple of hours at night. You would think after all these years my body would be use to them.

I have been offered other medications but as I seem to be one of those people who get lots of side effects from these drugs, I'm just going to stick with the Prednisolone. "The Devil I Know"

[celiacallum in reply to bowler]

Thank you you are making me feel less alone with steroid side effects and so far I'm not doing badly on the methotrexate. Good luck to you, hope things improve.

[tomasina]

Hi Ceiliacallum, I sympathise with your problems. I have been taking 15mgs. Methotrexate weekly since June, 2012, along with reducing Prednisolone. Now down to 1mg Prednisolone per day. I also feel nauseous after taking Methotrexate despite taking it on a full stomach in the evening. However, I do find after a night's sleep that things improve. My Methotrexate was increased to 20mgs. and then I really felt so sick and had to have anti-emetic drugs to prevent it and then was reduced back to 15mgs. I also take folic acid 5mgs. daily except on the day of taking the Methotrexate which is supposed to counteract the adverse effects of the Methotrexate. I am so appreciative of my Rheumatologist, who takes my GCA very seriously and believes in being cautious.

Good luck and keep positive.

Tomasina.

[iforget]

I was on methotrexate for years (for something else) and the rheumy has suggested I may need to go back on it again.

I found the oral mtx made me feel really sick at the dose I needed but once I was switched to injectable I was able to tolerate it.

A lot of people find they feel sick and tired within 24 hours of the dose and opt to take it on the weekend so that it does not interfere with work...I did not want it to interfere with my free time and so opted to take it on a Monday evening because Tuesdays a were less busy and I could plan for the mtx fogginess. I also had the distraction of work to help me through any MTX induced Blahs.

I would have my injection at approx 5pm on Monday, have dinner and then just relax for the rest of the evening. If there were any obvious side effects I slept through them. I would be foggy on Tuesday but that would soon pass. I had folic acid once a week three days after my mtx.

The blood tests are important when taking MTX as it can be hard on the liver and you should not take MTX if you have an active infection...

I know people who have successfully been on MTX for years without any real difficulties. I hope it helps you get some relief.

[nannacuckoo]

Hi all I have PMR + GCA been on steoids just over 5 years max dose has been 80mg for few months 60mg for many months last winter was able to get fight down to 5mg !!! until 3wks ago flare ups all round at 60mg at moment. I call them red devils. I had mtx tablets in early days for about 6mths totally screwed my stomache so was given injection was ok for about a year until i had bad shingles which has left me with alot of nerve damage but I am unable to tolerate myx anymore. Watch those steroids i am now insulin dependant thanks to them.. its a nightmare...devil and deep blue sea though have to take them for pm and gca eyesight bad enough dont want to loose it totally. Hope this makes sense got 60mg head on.

Take care all

[angeholder]

i am on methotrexate and havent had too many problems it has increased my asthma but thats all, i have now developed myopathy from taking steroids which feels much worse than my pmr i also have GCA

[Patsy235]

I as I have said on other posts, started by falling at work directly onto my knees (Oct '10)- damaged vertabre in my cervical spine and told them about an odd painn in my thoracic spine - fall had caused a tumour (that I may have been born with to 'come alive'. Having had 60mg of steroids for eight weeks to shrink the tumour i had full blown psychosis - My neurologist begged me to stay on these preds even though I was suicidal. I wanted to get back to work so continued. I had night sweats, drastic loss of weight and as I say completely psychotic - lost five months of my life and it was as I was tailing off the preds that I noticed this extra pain in the bottom of my back and sore scalp - this is also when my shoulders began to get so weak I could not carry a full kettle. In October of last year after going on and on for several months my GP said I could see a rhumy - I actually seen two - one from my neurologist in Newcastle and one where I live three hours away. Both diagnosed Fibromyalgia - my arms and shoulders were so bad could not get my dress off for examination! In March this year was sent to another Rhumy - a lovely man who came over from Africa. Anyhow even though my bloods had been normal for over 16 months, this rhumy took one look at me and said 'yes, I will inject your shoulders but it will not make much difference as you have rampant PMR'. Never heard of this before but the leaflet he gave me - I had ever symptom. Waiting to go on mtx, wait due to him having discussions with my neuro team. Orthopaedic surgeon said I am too ill for him to put my shoulders right and had empathy with my situation, said he would see me in a few months. So I have a multidisiplinary team - no job (I am an English Teacher) and my body is a mess, why? because I believed what I was told and did not press for more answers. When told your shoulders, skull, and bottom back pain is from my spine and fibromyalgia (which I still have) - you believe - but wish I hadn't, and won't do again! Stomach ripped with steroids last year so don't know how I will cope with MTX. I have every letter from every doctor/consultant including my neurosurgeon who I still see - thinking if I should blow them out of the water - However, to ill. Good Luck to you all who have PMR as the pain is horrific.