Methotrexate

[Ninnin67]

Hi hoping for some advice. Finally ive given in to methotrexate which im due to start sat however my consultant has prescribed 20mg . Upon reading about drug this seems high as usual starting does is 7.5 mg. Help and advice plz as already very worried about drug

[KittyJ]

Try not to worry and trust in your consultant. He knows you and your history and although some people start low and increase that’s not always the case. If it’s any help I didn’t start on 7.5mg either. I hope it works for you.

[Nanna71]

It seems you have been putting off the MTX for about 6 months or so? Likely the dr. wants to address the damage being done without benefit of Dmards, which MTX addresses. My start with MTX was at 10, which went to 15 and now at 25. I have nothing in side effects to complain of. Everything I worried about didn't happen and the 2 things that did come around have all stopped now - my journey with MTX is almost a year. The big deal for the dr. was getting off the steroids which have been difficult to reduce. Doing well now with a slow taper so at 11 mgs for pred and due to go to 10 on Sunday.

The thing about MTX - it reduces or slows the damage the RA does. That damage is permanent. The thing about steroids - tough on bone structure for many and doesn't help the RA damage. I also take another Dmard - sulfasalazine so combinations are supposed to do better than a lone one. Be encouraged, it's a tough ride.

[Ali_H]

Hi,

It’s higher than my start dose but that doesn’t make it wrong - I’m no Dr!!

There are a couple of thing you can do to ease things -

# Keep well hydrated - drink loads of water, mint tea etc throughout the week and extra on MTX day, the day after.

# Take the MTX with a food that helps keep the stomach ‘calm’ - I took mine with porridge and fresh ginger or plain yoghurt for the first 6 months.

# You can split the dose over the day - so 10mg at breakfast and 10mg at teatime might help. WARNING IN THE SAME DAY IS CRUCIAL.

Or take it all at the end of the day so that you sleep through the 1st hours after taking the med.

# Don’t look to have side effects as they are not compulsory but more a possibility!

I hope that’s helpful. I’ve been on MTX now for 5 years and it works for me as my only DMARD. 🤞🏼It proves to be the one for you also.

All the best

Ali

[Jillyanne in reply to Ali_H]

I used to split my dose , so I took half on a Friday and the other half on a Monday, if you do decide to split the dose check with your consultant first

[HanaleiBa]

In the US rheumie never go below 10. The body of research shows that has no appreciable effect. If you’re in a flare, 20 is very appropriate. Perfect dose really. Watch for side effects obviously but do it. It will hopefully bring relief and keep you from damage as well

[Brushwork]

It is normal to start low and gradually increase, the increase is usually weekly so it doesn't take long to reach the full dose.

I hope it works and you tolerate well...

[Clare26]

Honestly don’t worry. They gave me the option to start low at 2.5mg and increase or start at 15mg and knock it on it’s head and then they can look at decreasing in future. That was 4 years ago. I decided I was so fed up I reluctantly started at 15mg. I truly feared methotrexate and read far to much I got in a panic. But I also felt so unwell and had a baby and a toddler to look after. I am pleased to say it began to give me so much relief, relatively quickly and I’ve not looked back. I feel well, work full time and have 2 young children I do many activities with. I didn’t have the side effects I feared so much for so long. I don’t like the fact I have to take it but who does! I take it Monday nights then forget about it and get on with my life. As others have said drink lots of water , eat well, generally just take care of yourself. You will be fine . Good luck. X

[AgedCrone in reply to Clare26]

It’s so good to read of someone taking Mtx successfully....& just getting on with their life

Long may you continue to get relief from this amazing drug.

Let’s have more encouraging replies like Clare!

[Clare26 in reply to AgedCrone]

Believe me it’s not been easy. Especially in the beginning. And I had a real mental block about accepting this disease and ever being myself again. But I am and more so as I feel I’ve come up from rock bottom and dare I say thriving and living a good life. We take control by taking a drug to stop progression of the disease and stop irreversible damage. I’m thankful they exist to be honest. Don’t read horror stories. X

[AgedCrone in reply to Clare26]

Exactly...... I’m so glad to hear you are on the right road. I started off probably long before I think this site existed ...well before I had any sort of iPad anyway.....thinking I was going to be the brave little soldier and I would be better in a few months! Eventually the light dawned but I decided I was in charge not the RA.

It took me about 6 years before I was prescribed Mtx and thank goodness it suited me beautifully for seven years.....I’m now well settled on Rituximab. ....& I am happily retired leading a life equal to my peers...& a lot better than those who smoke!

My mantra now is don’t overthink every little twinge....but I still have a good old moan on the odd occasion!🤯

[Tiverland in reply to Clare26]

Hi Clare26

I was diagnosed in May and started on Max and Sul. The following month.But my real problem is I refuse to accept it. Get stressed, tearful. I know I have to accept it but find it so difficult. How long did this mental block last for you?

[cathie]

When I was on mtx I was also prescribed folic acid.

[Ribbon2079 in reply to cathie]

Yes, make sure to ask for folic acid. It helps with any possible nausea and hair falling out.

[Pulfs]

I've been on methotrexate for over 20yrs currently on 15mg metaject which I switched to because started feeling more nauseous which I don't get now. Also take folic acid 20mg over 5 days not injection day. As was said drink plenty to stay hydrated. Hopefully you'll be fine x

[Cal48]

This will get into your system quicker by being a higher dose. I always take mine in an evening with toast or similar and a cup of tea. Make sure you take your folic acid as prescribed. Hope it works for you.

[AussieHiccups in reply to Cal48]

'Folic Acid as Prescribed' - my exact question! What is the norm for 'prescribed'? My Specialist and my Pharmacist are at loggerheads! So I haven't started my MX yet!

[lilyak]

20mg is a very common dose. Methotrexate gets a very bad rap...people have been deriding it for decades. The TRUTH is that its a very safe drug, it is NOT chemo therapy in these doses. Its a DMARD. the most common and most successful one. Its the gold standard treatment. If your rheumy is starting you at 20mg, you likely have more agressive disease. Please, don't hurt yourself long term, out of short term fear. Any side effects mtx can cause are completely resolved when you stop the medication. YOu have NOTHING to lose by trying. And the stats show that it will most likely help you, with minimal side effects. I wish you all the very best.

[AgedCrone in reply to lilyak]

Very well said lilyak Accept a 💐💐💐.

Anyone about to start Mtx...read & believe lilyak’s opinion..& please stop reading Dr Google!

[Hidden in reply to lilyak]

lilyak I have just started and yes it is a road to travel but I prefer to try and get better with MTX than sit looking at a packet or google wondering what it MIGHT do in a bad way. I have mild issues from it but hey if it makes me sleep more and be a brain fogged I can cope with this right now.

I just want to get to a point I get my balance right for me.

[Hidden]

Hi Ninnin67 - I was like you about MTX, so I’m going to apply some common sense. You’ve finally worked up the courage to start, and you feel daunted by the size of the dose. I started on 10MG - for exactly the reason that I was worried about it. Why you don’t take a baby step and start there for the first 2 weeks and get your confidence - please remember to take your Folic Acid (which I hope you’ve been prescribed). Then work your way up towards the 20MG - over a couple of weeks, or whatever feels comfortable. There are no blood tests for the amount of MTX that you’re taking - it’s in your very best interest to try and do your best with this medication, at the pace that works for you. It takes a while for you to feel any benefit from it, so if it takes a little longer to get to that dose, that’s far better than you having an unpleasant experience, and giving it up all together. FYI - in OZ we start lower and work up. Just try and adopt a positive attitude to 10MG, drink lots of water and follow the other general advice you’ll find on here - I’m sure you’ll be fine. Hope this reassures you, cheers Deb

EDIT FROM ADMIN: To be clear, altering the dose from what the rheumatologist prescribed MUST be done with the knowledge and consent of your rheumatology team. If the dose is lowered without them knowing, the monitoring they do will not reflect the dose they think you are taking.

It should also be pointed out that starting on 7.5mg is pretty rare. That is the lowest dose they tend to give to people with RA, and I would say that it is more typical to start at around 10-15mg. 20mg is certainly the higher end of the scale, but not unprecedented. If you are nervous, it makes sense to discuss the possibility of starting lower and building up to that dose, but everyone is different, and the doses given to patients will take into account specific circumstances, so if one rheumatologist makes this change for their patient that does not necessarily mean that it is safe for you.

Also, to clarify, blood tests would usually be given for MTX at any dose.

[Hidden in reply to Hidden]

YanniBaci Although I was on 25mg previously, my dose is ridiculously low now, 7.5mg. But I still have regular blood tests.

[JEM95]

Don’t be afraid - MXT has given me my life back. I’ve been taking it for 6 years, and I never believed when I started it all those years ago that I could feel like the old me again.

It’s scary if you read about it, I did suffer side effects, but was encouraged to stick with it. I’m so glad I followed that advice.

Keep hydrated, take folic acid and try to keep positive.

I’m on Metoject pens, I also take hydroxychloroquine, I inject before bed on a Thursday night and have a bit of a crap night’s sleep, but the rest of the time I’m good.

I hope it works as well for you. Stick with it, any yukkiness will soon subside xx

[Treesha]

Dont worry, I started on 15mg then after 3 months increased to 20mg and have stayed at that dose now for 8 years xx it works well for me.

[cathie]

After 10+ years I was taken off mtx and noticed the difference within weeks. I was totally flattened and hadn’t felt so ill for ages. So I’ll try to reassure you

[Chance_chance]

Every one is different I started on it a year ago and started on 20mg I felt a bit sick at first but was fine. I'm still on it and it's helping. Best wishes and hope you feel better soon.

[Osc101]

Hi,

I was initially on 20mg tablets and am now on 25 mg Metoject pen. It has also given me my life back. I work full time in a school and am a single mum and have a busy social life. I occasionally get a little nauseous and don’t particularly look forward to taking it but I wouldn’t be without it!

[Mickymoo]

Hi there. I started methotrexate for psoriatic arthritis. Started at 25mg once a week followed by folic acid 2 days later. I wouldn't worry as I had no sickness and blood results were always spot on. If ypu read the possible side effects it would greatly put anyone off. I was sceptical at first after reading about the side effects but sure there are numerous side effects from just paracetamol. Your bloods will be monitored closely and any sign of anything amiss they will detect it early. Hope this helps a little xx

[MusicIsMagic]

I am newly diagnosed and started on 10mg with weekly increases to 20. As a DMARD it slows down the disease and damage so the sooner the better. The damage cannot be reversed so my guess is your Dr wants to get it under control quickly. You might feel some queasiness, etc but it's temporary so fight through it. I also take folic acid. Best of luck.

If you feel yucky come complain to us, we'll help you through it!

[Nocciola]

I started on 15mg a week oral methotrexate in April, and increased to 20mg a week in May. So far so good! The bloodwork indicates that I am clinically in remission. I take 2mg folic acid daily, and 3.5mg prednisone daily - which I am slowly tapering off. I work full time, exercise, and volunteer on the weekends. I initially resisted having to take medication for the rest of my life, but so far methotrexate has been great for me.

[DiHi]

I’ve been on it about 10 yesrdy-the dose gets altered sometimes,on the plus side there are serious findings that point towards the fact that people taking the medication are less likely to develop dementia, so that’s a good side effect?

[Stowe]

Hello, well I hope your first dose of Methotrexate went well and your feeling ok, it's easy to feel concerned when you start on this journey as everything is new and daunting. I started on methotrexate in April in April and am still on that dose. I've had small side effects but nothing major. I just had to learn to listen to my body and rest when I needed to. Try not to worry, methotrexate is a good drug and has practically taken my pain away. Good luck and keep us posted. X

[nomoreheels]

Hiya Ninnin67. Lots of good advice, I hope most of it has helped you? I wonder, is it the NICE guideline you're referring to as I know that under it's recommendation for RD it says starting dose of 7.5mg by mouth. This is intended as a guideline, patients are never one of a kind. For example as I’ve mentioned before I had few joints involved so MTX wasn’t the first prescribed DMARD for me whilst when you were diagnosed your RD was considered by your Rheumy to be aggressive & you took it that you were being pressured into taking MTX. Could it be that by choosing 20mg your Rheumy is trying to make up for the months of steroids, do you remember what what’s discussed at your first appointment? Maybe the lack of treating your RD with the intended MTX he really sees your starting dose needing to be, by comparison, aggressive? I'm sure you’ve discussed your concerns with your team, take heed of that advice & I’m sure all will be fine. If it happens to not be then there are alternate meds, but MTX must be the best option for you initially so work with your Rheumy, if it doesn’t suit then at least you can say you tried.

If you refer back to your first post in my reply I gave my experiences of MTX. There are quite a few hints & tips to help you, some have been covered by the kind replies of others, all are intended to ease your concerns & hopefully will do so. But the buck stops with you, it sounds as though you really do need to start proper treatment now. You said back then that you didn’t know RD was so awful... untreated it is, but it doesn’t need to be. Try turning that feeling of giving in to MTX as you taking control & it being the start of your proper treatment, where you should have been when diagnosed. We're here if you need to talk about anything, don't worry. 😊

[Nuttyshirlz]

Hiya hun I’ve being on it 3 years and I also take folic acid 6 days a week. But not on methz day and I also take sulfasalazine . My advice would be drink plenty. I don’t split mine take mine. when you get regular blood test. My advice would be ring your nurse and ask her/him all the questions you got they don’t mind also their are medical trained. Ppl on here are not and don’t no your medical needs like your doctors do.

Everyone is nervous when first start. Good luck

[Agoodlife]

Not East to know what’s right or wrong😳I think it depends on the doc and what research he has done. There are those who believe that starting high is better than low. There is research on both approaches. I think there are things that need to be analyzed in the patient thoroughly before deciding on the dose. Ask more questions! Good luck.

[ketiv74]

@ Ninnin, Like you, I was terrified of taking MTX, I was diagnosed Dec 2018 and was started on Pred initially for few weeks then added Mtx 15 mg (Inj). After 2 months of Pred and after Mtx had a chance to start having some effect, my Dr tapered off Pred gradually. I have been on Mtx only since April 2019. I did not have any notable side effects, I also take Folic acid 1 mg everyday except Mtx day plus some supplements ( Vit D, Turmeric, Fish Oil etc). I did get Blood test every 2 months initially, now its every 4 months to check liver function and blood counts, according to my Dr its important monitor your liver function while you are on Mtx to make sure its not having any adverse effects.

Mtx has worked for me well, I am officially in Remission per my Rheumatologist ( drug induced one), and for most part can go about normal Pre RA routine, including full time job, Regular walking and Yoga/ exercising as much as I can mange without stressing my joints.

Wish you good luck and hope Mtx works well for you as it does for many many people.

[Roggles]

Hi, I've been on mtx for over two and started on a so called low dose which was 6 x 2.5mg each week, so not much less than you.

I, like you, was very nervous about taking it and was trying to avoid it.

But two years on the arthritis is much more manageable.

Hope this helps

[MargaretStirling]

Hi there 67 it's almost 2 years now since I last had methotrexate I started off on the lowest dose injection it was then increased to 10 then 12.5 this was the highest I went to it effected my inmune system my kidneys I had to come of inject I then went on to tablet form but that only lasted for just over a year

[Jora]

I started at 15mg, but just for one week so that they could check my liver. As that was OK, I went up to 20 mgs and very soon after that, I was at 25mgs. I’ve had all sorts of problems with all the other drugs but Methotrexate has been brilliant. Try not to worry. You will be closely monitored. J

[Sallysuk]

I was very worried about taking methotrexate but felt so unwell that I decided to take them. I started on 15mgm and soon increased to 20mgm and have now added sulfasalazine 1000 mgm twice a day. I was so concerned about all the many side effects but after one year I have not experienced any and feel so much better. Trust your rheumatology team. Good luck.

[LauraJM]

Hi, Like you I was worried about taking Methotrexate when I read the information, but have had little trouble. I'm on 15mg. The benefits far outweigh the problems for me. I take folic acid on the days I don't take the Methotrexate and limit my alcohol intake but other than that carry on as normal. Been like this about two years and stable and in a good state most of the time. Have the odd flare up but usually can pin it down to something different I've done (the last one was when I was on a trip to India!) Give it a try, you might be pleasantly surprised like I was - no real pain or swelling to speak of now!

[RA2011]

I've been on 25mg methotrexate for several years.

I switched from tablets to injection because of the side effects sickness nausea. The injections bypass the stomach. I'm glad I tried tablets first

Good luck 😉

[Joharris]

I started on 10 and then up to 15 mcg but I suppose it depends on how much hormone they thyroid is putting out on its own

[Brumpolly]

Hi, I started on 7.5mg in April and Im still on that dose because I contracted a chest infection and was off it for a month, so they restarted me on 7.5mg. Come October I was showing not signs of RHM or pains so my consultant is keeping me on 7.5mg until January my next consulation date. I think it all depends on your level of pain and disease progression. I wish I had started on the Methotrexate a year ago but I was too frightened. As it is I have hardly any side effects, the odd nauseous spell but thats it and most importantly I have no pain unless I go mad in the garden but then I know thats my fault and not the meds. I do recommend Tai Chi if you are an anxious person (which I can be) its helped me enormously, that and regular walks with the dogs and I feel great. Good Luck, dont be worried you are in safe hands Im sure.