Methotrexate/ arthritis- any users?

Methotrexate/ arthritis- any users?

Author
Discussion

stoop44rio

Original Poster:

103 posts

193 months

Wednesday 11th March 2020
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I've just been prescribed this for psoaratic arthritis. After reading up on it I'm not too keen to start using it. Are there any long term users on here and if so how do you find it?

slipstream 1985

12,732 posts

184 months

Wednesday 11th March 2020
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I had it for severe eczema. It did nothing. I got constant colds like 1 every 2 weeks. I worked out that the root of the problem was psycological for me however the pysical damage is done for me as i have alot of scars (not the "cool" surgery ones)

Also I have some balding spots on my hair. Now 1 grandad had hair till the end and the other as well as cousins on his side went the bald strip from the middle.

Could be the methotrexate as that is a side effect could be genetics or that I did damage to my scalp scratching.

However i'm not a doc and that's just my experience it did nothing for my triggers or to cure the symptoms.

markiii

3,783 posts

199 months

Wednesday 11th March 2020
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Mother's in it for arthritis

Works but fks your immune system

Humble Pi

8,892 posts

192 months

Wednesday 11th March 2020
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Hi OP. I was diagnosed with a rare type of arthritis around 7 years ago. After diagnosis first drug I was put on was Methotrexate. I was taking 8 tablets a week iirc. After 7 weeks was pretty clear they were doing nothing so they put me on Sulphasalazine as well. Further 6 weeks no improvement at all.
I’m now on an anti-TNF (Enbrel) which pretty much turned my life around within 12 months, although I was feeling huge benefits after 6 weeks.

I had zero side effects from the Methotrexate. They are as rare as hens teeth my consultant told me. I agree it’s not a very nice drug but it’s very cheap to prescribe now and it’s been around since the late 50’s I was told.

Good luck.

Humble Pi

8,892 posts

192 months

Wednesday 11th March 2020
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markiii said:
Mother's in it for arthritis

Works but fks your immune system
Was just going to add you’ll be classed as immunosuppressed whilst taking Methotrexate so you’ll get the flu jab for free & please make sure you have it!

markiii

3,783 posts

199 months

Wednesday 11th March 2020
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Would not be going on it right now you need a fighting fit immune system

Squadrone Rosso

2,862 posts

152 months

Wednesday 11th March 2020
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Yes. This, Sulfasalazine & Otezla (Apremilast).

You need to take stomach meds (omeprazole & domperidone) plus folic acid.

It can be a bh to get used to but it’s also life changing if your symptoms are bad.

AdamIndy

1,661 posts

109 months

Wednesday 11th March 2020
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I have done in the past but it didn’t agree with me. I was fine taking 8 tablets/week for about 8-10 weeks then couldn’t keep them down. I’d have the tablets then spew a few minutes later.

I was then prescribed methotrexate in a self injectable form. Again, I was alright for a couple of months then the same symptoms. It really wasn’t nice having to inject myself every week either.

I lost the plot and sold my motorbike as I just couldn’t ride it anymore and in my early 30’s I went on a bit of downer.

I’m now on a concoction of sulphasalazine, hydroxychloraquin and leflunomide. I have very few side affects now and it works wonders for me most of the time.

I now have another motorbike with which I do trackdays all over Europe!biggrin

Methotrexate is horrible stuff if it doesn’t work for you but if it does work for you then it can be life changing. It has done for my dad with little to no side effects. Arthritis is horrible and those that have never experienced it just don’t/won’t understand just how nasty it can be.

Mine is/was for rheumatoid arthritis.

Hopefully it works in a positive way for you.

Scantily

394 posts

176 months

Thursday 12th March 2020
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I’ve been on it for 3 years now for psoriasis and psoriatic arthritis, it can give you really nasty nausea sometimes a day or two after you’ve taken it. And absolutely do not take it on a stomach full of booze (I did it once on holiday and had intense nausea for a week). I’ve more or less stopped drinking entirely since starting it.
The best thing you can do is to get yourself on a biological drug, they are absolute magic with very few side effects.
Sulfasalazine was rubbish and barely did anything.

blue_haddock

3,684 posts

72 months

Thursday 12th March 2020
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I'm on it for Rheumatoid arthritis which is now under control but the damage is already done.

Only on 6 a week now but was formerly on 10 a week. Absolutely minimal side effects but i am forever catching bugs.

Fastchas

2,688 posts

126 months

Thursday 12th March 2020
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I was on MTX for over 10 years with no ill-effects. In fact, my Dr removed my prescription for it as I refused to take folic acid alongside it. I hadn't took any for years and told the Dr, I hadn't even had any adverse blood tests over the years. She said 'I can't allow you to be on MTX without the folic acid'. I said fine, remove it.
No ill effects so far.
Don't bother with Sulfasalazine, it's beyond useless. Do whatever you have to do to get on the biological drugs. I am on Enbrel. A poster above said it turned his life around after 12 months - mine was 3 injections over 1 month!
MTX suppresses your immune system which combats RA - it stops it attacking your own joints. It is also a very good anti-inflammatory I think.
But in the current Coronavirus environment, the last thing you want is your immune system suppressed.
Trouble is, I suspect you will have to jump through all these medical treatment 'hoops' before you get on the good (expensive) stuff. Enbrel costs the NHS £10k pa each patient.

coldel

8,353 posts

151 months

Thursday 12th March 2020
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I developed PA back in 2018, ended up on crutches, couldn't get up off the sofa without pain in my joints, I was 42 at the time - as someone else said, the constant pain is horrendous and people who haven't experienced it cannot understand just how debilitating it is.

I went onto 15mg of MTX along with 5mg of Folic Acid, at first felt nausea but wasn't physically sick, I was in good shape, was doing gym, football etc. before I had to stop all that when I couldn't walk without the sticks maybe that helped I am not sure. Within about 3 months I was walking unaided and could pick up my 5 year old son again smile I binned off alcohol completely for that time and was eating very healthy stuff, lots of home made stuff, not jars or tins of pre made food. Was also advised, even though it hurt, to keep moving as much as possible. I suffered more from mood swings and lethargy than actual sickness.

My timeline looked something like this:

June 2018 diagnosed cannot move without crutches cannot get on the tube to get into work, working from home full time
July 2018 on the drugs
September 2018, getting back into the office couple of days a week
October 2018 very visible improvements
January 2019 back playing 5 a side football with my mates non competitive
March 2019 playing 11 a side competitive
May 2019 did a 15k tough mudder for arthritis charity biggrin

I am down to 12.5mg now and specialist says its in remission and likely to be reducing the drug slowly over the next couple of years.

Good luck with it all, arthritis is hugely misunderstood as an 'old mans disease' but amazing that tens of thousands of children in the UK suffer from it. Try the different resolutions, the MTX has hardly any effect on me other than the above, in the grand scheme of things being crippled and sofa ridden is infinitely worse than some sickness etc. but hope you find your solution soon beer

coldel

8,353 posts

151 months

Thursday 12th March 2020
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PS, although its anti-immune, I have been reading on arthritis websites and no evidence yet has been produced that suggests people on MTX are any more or less likely to contract the virus. Common sense would dictate it should leave you open, but they also say do not stop taking the drugs until more is understood.

stoop44rio

Original Poster:

103 posts

193 months

Thursday 12th March 2020
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Well from reading all above I'm very lucky. I've had PsA in my knee for over ten years diagnosed in my mid thirties. Now 44 and it turns out it's in my jaw! And several toes.
Really truly it doesn't effect me in daily life. My toes are swollen slightly and can be tender at times, my mouth opening isn't as wide as before and my knee would only hurt if I really aggravate it.( running/repeated heavy lifting).
I'm really hesitant about starting any medication. My mother has suffered from arthritis over 25 yrs and is in really really bad shape. Her doctors have told her in recent years her ill health is more from the amount of tablets/injections she has received during that time.
I know I'll need medication sometime but I'm very wary of taking it now especially as it will be for life.

coldel

8,353 posts

151 months

Thursday 12th March 2020
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As I understand it, untreated arthritis will leave you in a very bad way later in life also, depending on the severity. Its eating away at your joints. I take my tablets now once a week, it takes a few seconds and is part of the routine. I hardly notice it aside from the bouts of tiredness and mood changes. As I say infinitely preferable to being on crutches all my life and requiring major surgery in 10-20 years biggrin

blue_haddock

3,684 posts

72 months

Thursday 12th March 2020
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coldel said:
As I understand it, untreated arthritis will leave you in a very bad way later in life also, depending on the severity. Its eating away at your joints.
As a kid, the pains i had were dismissed as growing pains. I'm now 41 and my most of joints are severely affected. My rheumatologist reckons i've probably had it for 25+ years so yes untreated arthritis will screw your joints up right royally!

I've so far had a shoulder athroscopy, toe amputation and wrist fusion and looking at possibly a hip replacement in the not so near future.

mr_spock

3,363 posts

220 months

Thursday 12th March 2020
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My son was on it for years for Juvenile Arthritis. It worked like a miracle for him for a long time, then stopped. He switched to Enbrel/Etanercept and now Tocilizumab (sp?).

He was injecting, not tablets, side effect was nausea, he said it made his food taste odd at times so he has quite restricted tastes not he's in his 20s.

Incidentally, it seems that the Covid-19 virus nasty lung issues are possibly an immune over-response, and the Chinese helped by Roche are testing Tocilizumab as a treatment, so it's quite possible that being immunosuppresed may actually protect you from the worst symptoms:

https://www.fiercepharma.com/pharma-asia/china-tur...

FunkyNige

9,053 posts

280 months

Thursday 12th March 2020
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A friend has it for her Psoriatic Arthritis, she injects herself every Monday evening (it's an EPI pen type thing) and every Tuesday she feels like she has a bad hangover.

beerexpressman

240 posts

142 months

Thursday 12th March 2020
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In combination with other medications, I have taken methotrexate for approximately 15 years...

At 20 mg per week I suffered from severe tinnitus. On reducing to 10 mg, this cleared up completely.

Speckle

3,462 posts

221 months

Saturday 14th March 2020
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It was recommended to me for rheumatoid/psioratic arthritis. The arthritis itself is thankfully under control for the mostpart thanks to hydroxychloroquine. The recommendation was due to the additional symptoms of mild psorasis and pitted nails.

Having read the literature, I decided it wasn't for me. The psoriasis is annoying but, an annoyance that I can live with if the alternative means becoming more of a patient than I need to, for what are essentially 'quality of life' improvements as opposed to any kind of medical necessity.

I hope it works well for you.