Methotrexate

I just started MTX injections six weeks ago, and so far have no side effects whatsoever (12,5 mg, for Polymyelitis Rheumatica, muscle rheumatism). It's not a wonder drug, the pain relief mainly comes from the cortisone I take daily. But the specialist clinic told me that MTX is a lon-term medication for a few years, and then you stop it and watch if the PmR comes back.

The worrying side effects are mainly associated with the use of MTX in cancer therapy, where the dosages are much higher...

I took only one Leflunomide tablet and had such a severe reaction, I ended up in Coronary Care. In saying that, a number of medications have caused similar side effects for me. I have a history of allergic reactions to medication, so I am always apprehensive when it is suggested that I try something new.

That's excellent nanny2507, that you have found something, which works for you.
I can understand becoming fed up injecting yourself. The needle in my latest biologic syringe seems very thick. It is excrutiating when I inject. The other two needles were much thinner.

However, I am grateful for my supportive clinicians, who go above and beyond and the scientists who have developed the drugs, which help to give me a reasonable quality of life.

I was on methotrexate injections because the tablets caused me to have so much nausea. I did the injections for about 5 years and I got sick of being a pin cushion. I have been off it 3 years now. I refuse to go back on it. I have tried most of the tablets and injections that end in MAB. I have just started leflunomide and the side effects are zero

I have taken Codydramol for years to help with Rheumatoid Arthritis

Fidelity2, Codydramol is a painkiller. Howevr, I am interested to know, what disease modifying medication you take in conjunction with it, to manage your R.A.

Methotrexate had hugely positive effects on my mum

I forgot to add that I also take eight sulfasalazine a day and have a Fentanyl patch for pain relief.
No other painkiller has any effect, I have tried them all. Sometimes the pain is unbearable.
However, on a positive note, I am still here after suffering for nearly forty years.
I actually have had it for much longer, but the high dosage and prolonged use of steroids for COPD masked it.
It is a cruel disease, but treatment is improving all the time.

At last after being on three different types of biologics, I think this latest one may be helping.

One size doesn't fit all, it is a matter of finding the combination of drugs which suit each individual.
There is no quick fix, you need endless patience and a positive ( bloody minded in my case) attitude.

So many positive cases, I’m feeling much more reassured and dreading it less, thank you all.

I have taken Codydramol for years to help with Rheumatoid Arthritis .No problem

I have been on Methotrexate for over 20 years. It is a life changer. I remember slight nausea at first until my body got used to. Be aware not all antibiotics are compatible with it if you have an infection. Good luck

I'm taking Methotrexate for high inflammation levels found in my body which affected my aorta. I've been taking it for six years. It's reduced my inflammation levels and the dose has been halved. I've had no problem with it at all. I take folic acid six times a week as well.

My husband says I took the methotrexate for about 9 or 10 months - not the 4 I remember!
Apologies.

Still not very long I admit.

I took a "low dose" methotrexate for about 4 months many years ago.
It was totally terrific as pain relief and allowed me great freedom.

What I found hardest was the thought of taking drugs for life which made me feel like a patient all the time. I stopped taking it and put up with the pain instead.

I had no side effects. It did work very well.

Years later my arthritis is in a "pause" phase - but if it became dreadful again. I might use it if I could just "get my head" around taking it as I now know it works... and that when I stopped the results of stopping was just going back to the pain!
I am older now (obviously) and it is probably easier to accept that things are likely to be "forever wrong". When I was younger and still had teenagers in the house I felt the whole thing was totally overwhelming.

All the best whatever you decide.

Such wonderfully encouraging comments. I am feeling more hopeful and less depressed already - many thanks everyone who has taken the time to write 🥰

I think you will find the majority of the 400,000+ RA patients in the UK have been on methotrexate at some point and many find it keeps this cruel disease under control. Please take a look at the NRAS website nras.org.uk for the latest medication information, or give their helpline a call.

I have been on Methotrexate for RA for about 8 years now. At first I was affected by loss of hair and a burning mouth. The accompanying Folic Acid was increased from 1 day per week to 6 and from then on I have had no side effects. Although immunosuppressed I haven't had a single cold or infection, but taken all the vaccinations available. You will be offered them as a priority.
My blood inflammatory marker has always been high and my hands, wrists and ankles troublesome. Recently I also started on a biologic, Adalimumab, a monoclonal antibody which targets inflammation, self-injected once a fortnight. Since starting it I have had no flare-ups and the blood marker is almost normal. It has also greatly eased my OA in both knees. As far as I am concerned it and Methotrexate are wonder drugs! You have to score a certain figure calculated on joints affected etc. to qualify for these drugs. I would urge you to be led by the experts, they do know what is best for you. My Rheumatology Dept has a knowledgeable team of advanced practitioner nurses who can be contacted with any queries, hope you have the same.

Thank you Notagranny44 and CrazyH for the positive stories, there seems to be so much negativity regarding the drug out there and not much positivity! I will forge forward and no doubt be back on here regularly to get more information and support! THANK YOU

P.S. The RA is much more likely to make you unable to work than the Methotrexate!

I also have rheumatoid arthritis and am on methotrexate. It has made an enormous difference to me, both in the amount of pain I suffer and in the amount of damage the disease does. Yes, the possible side effects are worrying, but lots of people, including me, do not experience them. Yes, it does result in immunosuppression, but that is manageable with care. Regular blood tests mean that your GP can watch out for any damaging effects.
I used sometimes to wonder whether it was working but after a spell of 7 weeks about 10 years ago when I had to come off it because of a dodgy blood test, I know that it does. The deterioration in my condition during that time was crippling - literally! I had to use a wheelchair and could not even dress myself because of the damage it did and the pain was something else! I eventually recovered most of the function I had lost, but not all.
I am grateful that that since then I have not had to come off it again for more than a week or so (when having joint replacement surgery) and most of the damage the RA could do to my joints has been held at bay.
As Marydoll says, the medication is MUCH the lesser of two evils, and one comes to terms with it!
I wish you well!

Btw she a full time job and retired when she was 65.

My friend was diagnosed with RA at the age of 34. She is now 78. She is also Methotrexate, amongst other medications. It has given her a quality of life. She travels all over the place - has been to America , India, Europe. She is frailer now, and uses a walker. But has and is enjoying life.

Thank you so much for your reply Marydoll. I am terrified I will suffer bad side effects or keep getting infections and be unable to work. I’m awaiting the results of my chest X-rays as I was a smoker but gave up 11 years ago. Feeling very nervous as everything I read about methotrexate is quite negative and just trying to get a full picture of pros and cons. Thanks again.

There are many on GN with R.A. Methotrexate does make you immunosuppressed, so you have to be really careful about avoiding infection, especially as Covid is still about.
I have RA specialist nurses, who are very supportive and answers any queries or will contact my consultant if I am unwell. You should enquire if your clinic has one.

I cannot have Methotrexate, due to lung problems. Consequently after working my way through all the suitable R.A drugs for thirty years, I now inject biologics. am on my third lot, I can only tolerate the medication for so long. The side effects are even more worrying than Methotrexate!
However, it is the lesser of two evils.

Go into the Versus Arthritis website,
www.versusarthritis.org/?gad_source=1&gclid=Cj0KCQjwpvK4BhDUARIsADHt9sRs2ePp6LZA6BtEk2F9y91WcXhAZ8Pt68bbFuEpwlkgTH0Vc8jS-tkaAohcEALw_wcB
where you can read up on your condition.

I wish you all the best and hope taht you find some relief. Please bear in mind, these drugs take some time to work and you have to tolerate the sideeffects.