Methotrexate

ElaineRD

Hello,

Firstly, I'd like to apologise if I've posted incorrectly. I'm brand new to this forum and am so glad I've stumbled across it as it has answered a lot of questions for me.

I was diagnosed with Psoriatic Arthritis 5 years ago, some 17 years after first being diagnosed with chronic Psoriasis.

I have recently been prescribed Methotrexate and have literally just started on this medication (it's my second week).

I was wondering if anybody else has experienced unpleasant side effects? I've not as yet had the nausea but I'm extremely tired and wiped out for a couple of days after taking my medication. I've also found that my joints feel worse and I'm now experiencing more aches than I had prior to starting Methotrexate. Has anybody else had these problems? I'm thinking it's all about sticking with it until my body has adjusted to it. Also, my periods have stopped... Could be coincidence (I'm 44 and perimenopausal) but not sure.

Sorry to bombard but I'm feeling so dreadfully low and at my wits end as to whether this really is a 'miracle' medication or do I just live with my deteriorating symptoms.

I would be so grateful for any replies/advice that any of you lovely people could give.

Many thanks

Elaine x

dreamdaisy

Hello, it's nice to meet you and I am pleased you've found us. We know our stuff about meds and arthritis and please be assured you have posted in exactly the right place to ask your question.

Meth can be a miracle medicine but I know of only one person on here for whom that is true. For the rest of us it's a curate's egg of a drug. I am now on the injected version (and I'm one of the lucky ones that doesn't have too much trouble with side-effects) and combined with humira (an anti TNF) drug my PsA is well-controlled but far too late in the day for any real physical or emotional benefit to be felt. I'm amazed that although you were diagnosed five years ago it's taken until now for meth to be introduced: what were you taking before or was it more a case of the arthritis not being too much of a problem? As for feeling more aches I don't know why that could be but the body can have trouble adjusting to this drug, it's powerful stuff and we all react differently. It can take anywhere between two to twelve weeks to 'kick in' so stick with it and I hope you soon start to feel a positive difference. I wish you well. DD

joanne66

Hello there, and welcome
i'm on metha and it works for me too, took approx 6-8 weeks to feel a good benefit. about 20 mins after taking metha i feel sick but it doesnt last long....i take them at supper time then go to bed....sleep it away
jo

trepolpen

hi Elaine

welcome to the forum , been on Mtx almost 15 years for RA , its a good drug it you can get along with it , I take 25mg & 5mg folic acid six days a week & its the folic acid that sorts most of the side effects from the drug

hope you feel better soon

ElaineRD

Thank you both so much for the quick replies.

I'd always controlled my PsA with Naproxen and when the pain was really intense Tramadol... Both drugs gave me a quick fix for pain relief but the pain in my joints, particularly my hands has got progressively worse.

I was first offered Methotrexate 2 years ago but after (stupidly) reading up on it, I decided to keep away from it due to the side effects...

So here I am 2 years down the line in much more pain and wishing I had been less stubborn back then. I am going to stick with it though as I hoping it'll control my psoriasis too.

Thanks for the tip of taking it before bedtime. I did this at the last dose and I feel better for it. I suppose I've got to just go with it for the moment and hope it settles... Thanks again for responding, this is the first time I've been in contact with anybody who suffers from the same things.

Elaine xx

p.s. My other auto-immune problems are: Hypo-thyroidism, Vitiligo (alongside the PsA and Psoriasis).... Oh asthmatic too..... If I was a car I'd definately fail the MOT!!!

ElaineRD

Just cross-replied.

Thanks for the folic acid advice! My consultant has told me only to take folic acid the day before I take Metho. I'm now going to give it a shot and take it daily as this might ease the side effects.

Many thanks x

rockchick

Elaine, hi, and I hope the methotrexate gets things under control for you.

But please, hold back on the extra folic acid unless your rheumatologist suggests you need it. If you aren't having side effects, then it may well continue that way, in which case why take an extra drug you don't need? If you need it, then your doctor will prescribe it. The doses of folic acid taken alongside methotrexate are not available over the counter. Many people manage on the one 5mg dose per week.

Even if it might not do you any harm, it's unwise to take any prescription medication that isn't prescribed for you by a doctor.

trepolpen

hi Elaine

got to agree with rockchick , dont do anything without checking with the rhummy nurse or consultant first , the consultant varies accross the UK as to what they recommend regarding folic acid + you may not get any side effects from Mtx

stickywicket

Hello and welcome from me, too, Elaine. I have RA but I’m on meth too and it works well for me. I’ve never done too much in the way of side-effects but I can get the ‘wiped out’ day – usually the day after my meth but sometimes the day after that. I don’t think the meth will be causing the joints to ache more (though I’m not a doc). My guess would be that it’s just the PsA getting worse as the meth hasn’t really kicked in yet. However, only the docs can really answer that sort of question plus the one about your menstrual cycle – or lack of it :roll:

Your plan to ‘stick with it’ is a good one. It’s very early days yet and it hasn’t had a proper chance. However, never take a unilateral decision about meds while on meth. If you ring your rheumatology helpline they may suggest you up the folic acid (We are all on different doses) but they may also suggest you stick with things for a while. And do make sure you get your regular blood tests. I hope it works for you.

ElaineRD

Thanks for the good advice. I'll not increase the folic acid until I've spoken to my consultant. I'm due to see him next week so I'l discuss this with him.

I've just come back from my GP who thinks the lack of periods is just coincidental as I've been perimenopausal for a few years now. He's taken some bloods as he said that decreased levels of oestrogen can cause joint pain. He agreed that the Metho would not likely cause that side effect.

This is such a great forum and I've already found some sound advice on how to deal/live with PsA.

Thank you x

DebraKelly

Hi.

I have been on Meth since I was diagnosed with RA 4 years ago.

Its a great drug and has done a lot for me.

I was originally on tablets, but now on injections.
The injections do work better than the tablets and for someone who is terrifed of needles that is saying a lot! lol

At first, I did experience a lot of side effects, tiredness, sick, upset tummy and hair loss, however these have all gone now.

I still occasionally feel sick, but mints usually help with that.
Always take the Meth before you go to bed, this will help reduce the tiredness you feel the day after.

Hope this helps.

stickywicket

I'm glad you talked this over with your GP and I hope the rheumatology appointment goes well next week. Please let us know what the verdict is

nanarose

Hi, and welcome to the forum.

I have PsA too, and am currently on methotrexate, though I have had problems with my liver levels with it.

I was very sick with the pills, and do occasionally still feel queasy with the injected meth. I take 5mg folic acid 24 hours after my injection.
It does take a while for you to feel any difference to be honest, so stick with it, and I hope it works well for you.

Re the psoriasis; the meth has totally cleared mine which makes me really happy as I was pretty bad with it all over. Not nice, as you well know!
It's so great not having to cope with all that pain and horribleness. Is that a word? If not it should be! No creams or potions or all those trips to the hospital for light treatment - that alone is worth being on the stuff.

It seems that a lot of us have thyroid troubles too. I have a whole gamut of ailments, so won't bother you with them, but do keep up with your regular blood tests as they give the docs and yourself invaluable information.

Fingers crossed that meth is a wonder drug for you! x

ritwren

Hi Elaine, I just wanted to add my welcome to the forum. I too have PsA, was on injectable Methotrexate for a few years then changed to Leflunamide early last year. It was rubbish for me and I spent most of the past year in quite a bit of pain with swollen angry joints and feet, not to mention a total outbreak of the Ps.
I started back on the injectable 25mg of Methotrexate late Nov last year and started Humira the 2nd week of Dec. Things are a lot better now, Ps all cleared up and the joints less swollen but I'm still in a fair bit of pain and the joints are stiff.
I don't think the Humira is the wonder drug that I've heard.
Very best of luck.
rita.

maria09

Hi
I too have just started mtx
Good advice about taking it at night but is it ok to take colic acid the next morning or take it that evening?
I take mine sun am thinking of changing to sat pm
All my joints feel worse at min but think I'm a bit odd as have OA and nodal OA plus inflammatory arthritis but will stick with it
Before I started it I had to have flu and pneumonia jab requested by my rheumy nurse. My gp practice nurse said I didn't need the pneumonia one luckily I had my mtx book which states I should have it. My gps is in a different health authority but should not make a difference. My rheumy nurse checked the nice guidelines and she was correct.
Has anyone else come across it?
I wonder why we are put on tablets 1st and not straight on to injections?
Maria

dreamdaisy

Hi Maria, re the folic acid question: I was told to take mine at least 24 hours after the injection but I do it 48 hours after on a Friday so I remember. If you are on more frequent doses of FA it shouldn't be taken on the day of the tablets or injection. Why the tablets first? Cost, I would imagine. Pills are cheaper than fluids and syringes. I've had both the flu and pneumonia without any questions about the latter, remember that GPs practice nurses are not meth experts.

I too have OA and the meth/humira combo doesn't touch that in the slightest which isn't surprising. I do find my mobility increases a little for five days or so on my double injection week but tails off thereafter. DD

pot80

I have only been on methotrexate for just over two years at 15mg with folic acid the day before. I take my pills at breakfast and after the very early days have had no real problems. The odd day that I do have what I feel is a problem I cannot categorically say is due to meth. The consultant limited my alcohol intake to 10 units/week and I stick strictly to this as I never want to feel like I did when I started RA with a polymyalgic onset (I lost 15lbs weight). I do not touch alc.on the days I take my pills and restrict any alc .to the w/ends.I was never a big drinker but it still came hard. I now always check the alc. content of a drink before having any.The upside ? we saved
a bit of money. My wife says that it is the first time I have ever done what I have been told. It came as a surprise taking advice from someone less than half my age (I am 78) .I am very happy with meth. and would not suggest trying any thing different without medical supervision.

lizzy100

No havent experienced that. wouldnt have thought it should make joint pain worse or cause muscle ache, but who knows.
I felt very tired the first few weeks to taking it, so be prepared for that, i was totally wiped out and had to sleep alot to start with. However now it doesnt make me tired at all so it did wear off after a few weeks. It made me feel slightly sick the first couple of days after taking it as well and i was sick once. but again that all seems to have settled now (i think!) although iv got to increase it again this week so that may set it off again. My hair also falls out alot on it. apart from that, its not too bad.

ElaineRD

Hello again,

Just taken my 3rd dose of Methotrexate and still experiencing some strange symptoms. I must admit I cannot wait to see the consultant this coming week as I've felt really quite poorly, terribly drained and coping with a chest infection exacerbated by my asthma. Latest problem has been difficulty swallowing and just thought it was part of the 'bug'. However, woke up this morning and I have a swelling on my thyroid, quite visible. I've suffered from hypothyroidism for many years so am concerned as to why now I've suddenly developed a goitre. It's a long shot but has any other Hypothyroid sufferers experienced these bizarre symptoms.

Thanks again for all having a great deal of patience and understanding, I'm sure most people I know think "here we go again"!

Elaine x

dreamdaisy

My hospital have always told me not to take my meth etc when I have an infection because, as they suppress the immune system. they won't help me get better and I stay 'iller' for longer. No wonder you're feeling rough, please talk this strategy over with your consultant, views on this do vary but it makes sense to me. DD

ElaineRD

Thanks DD,

I do feel so much worse that usual. On Friday my asthma was so bad I had to go to the surgery and was put on the nebuliser as my Oxygen Sats were so low, after which my GP prescribed me steroids. I asked whether this was safe etc with Metho and they told me to go ahead, I'm unconvinced though . Thanks for listening DD, feel I'm going mad!

xx

dreamdaisy

I had chronic asthma as a child ( this was pre-inhaler days) but now, thanks to the meds, it's not a bother any more. It will take some time to get your meds tweaked and adjusted but hopefully they will also help to ease the wheezing. DD

ElaineRD

Thanks DD, I'm almost at the point of giving up on Metho before I've really started.. I'll persevere though as the benefits should far outweigh the niggles x

maria09

Hi Elaine
DDs right I was told if I get any infections I must stop my mtx straight away and tell my doc and not to restart until I was over the infection as mtx does lower your immune system
Do you have a rheumy nurse they are really good answering any questions
Hope you feel better soon
Maria

stickywicket

How are you today, Elaine? The asthma sounded nasty. I’m wondering when this week, you’re due to see your consultant as, if it’s not until the end of the week, maybe you’d be wise to ring your rheumatology helpline for advice.

Brampe

Hi, I was diagnosed with seronegative arthritis a couple of years ago and osteogeneis imperfecta affecting tendons and ligaments nine years ago. 15 months ago methotrexate was added to the sulfasalazine, plaquinal and cocodamol that I already take. It has been a rollar coaster of a ride with blood levels dropping so medication being lowered to suit. Currently trying to increase methotrexate slowly to combat pain but over all better than i have been in the past. On the night that i take methotrexate i wake several times a night feeing very sick but not actually being sick. Is this normal?
I also now take quinnine for cramp at night. I have suffered with cramp for as long as i can remember in feet and legs at night but now get it at any tme of day but also in neck and hands. Is this related to the arthritis?
I have had a mirena coil fitted to stop my periods and this has helped with the extreme pain in back and hips each month making that pain more manageable.
The blood results show tha inflamation levels have dropped significantly but could still lower some more. Once condition is controlled will it stay stabalised? Will medication have long term side effects?

Any advise would be greatly appreciated. Please excuse spellings.