Methotrexate 15 mgs anyone ?: Hello again I hope... - NRAS

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Methotrexate 15 mgs anyone ?

Shyandretiring profile image
โ€ข47 Replies

Hello again I hope everyone is as good as the can be both mentally & physically as spring is springing & vaccines etc etc !๐ŸŒˆ

Yesterday I had my 2nd Rheumy clinic and my Rheumy doctor is taking me off of the 90 mgs of Etoricoxib as my inflammation has come down and the 90mg of Etoricoxib is not working as well as the 120 mg dose was.

He has now put me on a course of 15mgs of Methotrexate and when I handed in my prescription to the high street pharmacist he scared the living S*##T out of me !

Has anyone else been worried or is on a course of Methotrexate and still has a functioning liver ๐Ÿ˜ฑ

After speaking with the pharmy I am not sure I want this in my body as the side effects sound worse than the RA !!!

Trembly yours

Shy&retiring

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Ali_H profile image
Ali_H

Hi,

Iโ€™ve been on MTX for over 6 years now and itโ€™s been my only med. At my highest dose Iโ€™ve been on 20mg once a week. I was down to 15mg a week until I had a bout of COVID in October and now Iโ€™m back up to 17.5mg and a short course of prednisone to try and get things settled. Iโ€™ve never had liver or other problems other than feeling a bit nauseous and tired when I first started on it. Did you get folic acid prescribed as well? I currently take 5mg twice a week but not on MTX day.

Tips =

Drink plenty of water day before MTX day, on the day and the day after.

I took mine with porridge with fresh ginger in it to ease the nausea.

I split the dose and take some with breakfast and some at tea time - but never split over night take in the one day.

Leave off alcohol for the 1st six months at least ( I only drink red wine once and a while any way so that wasnโ€™t hard to do but it gives your body less toxins to deal with).

Hopefully something there will help you to have a smooth transmission with this DMARD.

All the best

Ali

Shyandretiring profile image
Shyandretiring in reply to Ali_H

Thank you so much Ali

These tips / nuggets of wisdom mean so much when starting out on a new course of drugs don't they !

I will be on 5mg of folic acid for 6 days and 15 mg of Mtx with blood tests every 2 weeks.

Again I am so grateful for this advice.

๐Ÿ˜Š

helixhelix profile image
helixhelix

What an idiotic pharmacist. Did they think the doctor prescribed you MTX as a joke? Sure MTX is a serious drug, but you have a serious disease that is progressive and systemic. As you know, as well as your joints it can affect all your organs includimg things like your eyes. Taking anti-inflammatories like etoricoxib does not change the underlying disease, just tackles symptoms.

Have you also looked at the patient information leaflet for Etoricoxib? As well as problems like bleeding from the stomach they are also associated with a higher risk of heart attack and strokes. I donโ€™t know where you are, but here doctors are no longer allowed to prescribe more than 60mg because of this risk (except for a short course).

I have been on varying doses of MTX for 11 years. It gave me my life back, and once adapted to it I have had no problems whatsoever. Aliโ€™s advice is good, especially about drinking water. I also stopped drinking alcohol completely, but now drink when I want to but just keep to under 14 units a week. My liver is doing just fine. And you are well monitored so any potential problems cam ne picked up early.

bubblyalex profile image
bubblyalex in reply to helixhelix

Couldnโ€™t put it better.

Ohuela profile image
Ohuela in reply to bubblyalex

I agree totally take your methotrexate

Shyandretiring profile image
Shyandretiring in reply to Ohuela

Ok Ohuela I hear you !

Shyandretiring profile image
Shyandretiring in reply to helixhelix

Thank you HH

Are you making it clear that all drugs are frightening ( Etoricoxib v Mtx ) ?

helixhelix profile image
helixhelix in reply to Shyandretiring

People die from accidentally taking too much paracetamol, aspirin can cause gastrointestinal bleeding and burst blood vessels. And natural supplements like St Johnโ€™s Wort can damage your liver and interact badly with prescribed medicine.

Yes, all drugs whether prescribed or natural herbal remedies bought in a health food shop can potentially cause harm. Thatโ€™s why there is a lot of focus on making sure the benefits of what we are prescribed outweigh the risks by a long, long way. We are also lucky in that we are generally well monitored.

RA is a nasty disease, left to its own devices it can do dreadful things. For the majority of us the drugs give us back a normal life. But treat them with respect.

Shyandretiring profile image
Shyandretiring in reply to helixhelix

Hi HHWrong word frightening, I meant " with risk" which of course they are.

You are not frightening me, you are being the very opposite of that, supportive and caring.

๐Ÿ‘

LoneEra profile image
LoneEra in reply to Shyandretiring

I donโ€™t think HH was trying to frighten you ๐Ÿ˜˜ Itโ€™s more that the MTX side effects arenโ€™t necessarily worse than other RA drugs...or other pills we all commonly take.

Yes, there is a slight risk with any drug. But itโ€™s a calculated risk.

Think about it as if you were your child or your parent. If a doctor said to you โ€œok, I can give your sick child/parent this drug that could revolutionise their life. There are a few possible side effects to be aware of - but the serious ones will be monitored to help keep your child/parent safe. The alternative is to do nothing and leave your child/parent in pain and with a debilitating disease that is only likely to get worse.โ€

What would you do in that situation? I know Iโ€™d choose the MTX every time! xx

helixhelix profile image
helixhelix in reply to LoneEra

No I donโ€™t want to frighten anyone!

Shyandretiring profile image
Shyandretiring in reply to LoneEra

Thanks LoneEra

You are right with your scenarios Parents/Children you make the best possible choices for them as you should for your own well being.

Thank you for your concern x

LoneEra profile image
LoneEra

Please donโ€™t worry. People have taken MTX and had amazing results - itโ€™s worth giving yourself that opportunity.

Iโ€™ve come across a few pharmacists recently who have given me their opinions on my drugs too. I take 2 controlled drugs for fibromyalgia...apparently this is distasteful to some pharmacists!! But I donโ€™t let it impact me - they have no idea why Iโ€™m taking them or how big a difference the drugs make to my life.

Good luck on the MTX xx

Shyandretiring profile image
Shyandretiring in reply to LoneEra

Thank you LoneEraYes the Pharmacist really freaked me out.

Like most of us on here, until recently when I was diagnosed I very rarely used the pharmacy so it is a real eye opener !

bubblyalex profile image
bubblyalex

I am on 15mg injection. Have been for just under a year. Regular blood tests will pick up on concerns. I seem to recall having a chest X-ray before I started any ra meds... but not sure ๐Ÿค” I think when I started the med it was tests every two weeks for the first 3 months... again my memory is a little vague of that time. It wasnโ€™t my wonder drug but I have to keep taking it for the Biologics. Good luck .๐Ÿ€

Shyandretiring profile image
Shyandretiring in reply to bubblyalex

Thanks BubblyWhat is you pain score now 1out of 10 ?

bubblyalex profile image
bubblyalex in reply to Shyandretiring

Feel free to read the other posts that I have posted over the last year. I think that will tell you more about where Iโ€™m at and have been rather than a pain score. ๐Ÿ€

Shyandretiring profile image
Shyandretiring in reply to bubblyalex

๐Ÿ‘

Boxerlady profile image
Boxerlady

I've been taking Methotrexate since my diagnosis in 2019 and no real problems apart from a few irritating but perfectly manageable side effects; it's often called the "gold standard" treatment for RA and is widely used.Having started on 15mg tablets, I've worked my way up to 25mg by injection (the maximum dose) and in conjunction with Hydroxychloroquine and Sulfasalazine, my RA is well-controlled and my rheumy is now considering reducing my dose to 20 mg.

Personally, I'd trust my rheumy over any high-street pharmacist and grab any treatment he prescribes with both hands ๐Ÿ˜‰

Shyandretiring profile image
Shyandretiring in reply to Boxerlady

Thanks BoxerladyI hope you can continue on your upward projectory and can reduce your meds, got to be good for you.

๐Ÿ‘

Dobcross1 profile image
Dobcross1

Hi I know what you mean - when the Rheumatology Nurse went through the side effects of MTX I really didn't want to take it. Thank god I did though! I'm on the maximum 25mg injection (since Jan 2019 when I started on 10mg). Liver results are ๐Ÿ™‚๐Ÿ‘Œ. You'll have weekly, then two weekly, then monthly, then 3 monthly blood tests to monitor your liver (amongst other things) and Ali's reply gives great tips on how to minimise any side effects at the start. As HH says in her reply, Folic Acid is important too - I take 5mg every day except MTX day. Good luck and hope MTX works as well for you as it has for me.

Shyandretiring profile image
Shyandretiring in reply to Dobcross1

Thank you Dobcross

A lot of people on here seem to have Mtx injected.

Is it more effective being administered that way ?

Dobcross1 profile image
Dobcross1 in reply to Shyandretiring

Injecting bypasses the stomach so I think it delivers the dose more directly (but I'm not an expert!) - but lots of people do really well on the tablets too so it's really whatever works for you. Honestly I hated the thought of taking it after that bloody Rheumatology Nurse frightened me half to death - but now I'm really glad I did!

Shyandretiring profile image
Shyandretiring in reply to Dobcross1

Well the Rheumy consultant didn't offer me a choice with the injection, unless they never do and it's all tablets first and see how you react.Good to know that your glad you started taking MTX, it makes me feel a lot better about it.

๐Ÿ™‚

Dobcross1 profile image
Dobcross1 in reply to Shyandretiring

Yes, I think everyone starts on the tablets first.๐Ÿ˜

Shyandretiring profile image
Shyandretiring in reply to Dobcross1

Thank you Dobcross1

Kind regards

Shy

AgedCrone profile image
AgedCrone

Unless the Pharmacist knows you have liver problems ....he is talking through his hat. Iโ€™m sure your rheumatologist knows what heโ€™s doing.

Many on here are on Mtx very successfully. I was on 25mg for seven years and forgot I had RA during that time.

If It suits you itโ€™s a wonderful drug ......so take a deep breath and get started....but until you are used to it and until your rheumatologist says you may have a tot.....leave the alcohol in the cupboard!

Shyandretiring profile image
Shyandretiring in reply to AgedCrone

Great advice !The pharmy does not have my medical history you are right.

Good advice about the non Alcohol too !

๐Ÿ‘

Taffsmum profile image
Taffsmum

Hi, I have been on 15mg methotrexate together with a biologic for 15 years. I have 3 monthly blood tests, drink water and my rheumatologist said to drink alcohol in moderation. I have had no probs. Hope this helps x

Shyandretiring profile image
Shyandretiring in reply to Taffsmum

Thanks Taffsmum

I will increase my water consumption and leave the alcohol for now just to give the Mtx a chance.

Your balanced approach is re-affirming.

๐Ÿ™‚Thank you !

vonniesims profile image
vonniesims in reply to Taffsmum

Me too

Smelliott profile image
Smelliott

I'm currently on 25mg long-term, zero side-effects! They regularly send you for blood tests to check everything is cool.

Shyandretiring profile image
Shyandretiring in reply to Smelliott

Thanks Smelliott

๐Ÿ‘

KittyJ profile image
KittyJ

Yep, 20+ years and my liver has always been fine.

Shyandretiring profile image
Shyandretiring in reply to KittyJ

Good to know KittyjIf you do not mind can I ask you, do you drink alcohol or not ?

Regards Shy

KittyJ profile image
KittyJ in reply to Shyandretiring

I used to have the occasional drink but not to start with. Iโ€™m a lightweight now so donโ€™t drink at all. Cheap date ๐Ÿ˜

Shyandretiring profile image
Shyandretiring in reply to KittyJ

Thanks Kitty.

Wobbies profile image
Wobbies

Worry not, I am on MTX 15mg. by injection weekly. I asked for injections as I have enough bowel trouble without an additional problem. They tell you all that can go wrong then nothing does. It is scary at the start but you slowly relax about it as your blood tests are OK and it helps the pain. Soon, you find yourself saying that you couldn't live without it.

Shyandretiring profile image
Shyandretiring in reply to Wobbies

So good of you to share that wobbles.Very much appreciated.

Shy ๐Ÿ˜Œ

Kags1068 profile image
Kags1068

Hi there!

What an irresponsible thing for the pharmacist to say! As other posters have explained (far better than me), all drugs have potential side effects. Thankfully we are well monitored and I can't help but think the risk of uncontrolled disease and possible permanent damage outweighs the potential risk of side effects you will hopefully never experience.

I have been on Methotrexate for about 31 years now, since I was about 21. I take it in conjunction with other DMARDs, steroids and a biologic. My liver is absolutely fine - no problems at all.

Please don't be afraid to try it. You never know, it could be your "wonder" drug!๐Ÿคž

Best wishes ๐Ÿ˜Š

Shyandretiring profile image
Shyandretiring in reply to Kags1068

Thank you so much Kags, 31 years on Methotrexate gives me so much more confidence ๐Ÿ‘

Kags1068 profile image
Kags1068 in reply to Shyandretiring

Good. I'm very pleased to hear that. Good luck ๐Ÿ˜Šx

ketiv74 profile image
ketiv74

Hello, I guess the pharmacist think he/she knows better than your Dr. All the advise above is great, I would definitely trust the Rheumatologist and go for it.

As for Mtx, I am taking 15mg Inj once a week for last 2 + years. It worked very well for me and did not experience any side effects other than some hair loss which was controlled with increased folic acid. Since starting Mtx I was virtually pain free, with occasional minor aches & pains, but never needed even a single pill of painkiller. They will send you for routine blood test every 2-3 months or so to monitor liver enzymes, I had couple of times where AST & ALT went up a little but they came down in next test so did not concern my Dr. Mtx is considered gold standard for RA for a reason, so don't worry, give it a try.

Shyandretiring profile image
Shyandretiring in reply to ketiv74

Thank you KetivGood to know you are pain free because of MTX,

very re-assuring to read that.

Kind regards

Shy

Pulfs profile image
Pulfs

Iโ€™ve been on methotrexate for over 20yrs and currently on 15mg weekly injection and 6 days of folic acid. Have blood tests every month. If my liver function result has risen rheumatology call me and say to stop for a couple of weeks then retest and go back on it. As long as you take the folic acid along side it you should be ok . Donโ€™t let the pharmacist frighten you listen to your consultant heโ€™s got all your n medical history and is checking you regularly. X

Shyandretiring profile image
Shyandretiring in reply to Pulfs

Thank you Pulfs

You are very reassuring X

Pulfs profile image
Pulfs

Glad to help xx

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