Methotrexate - the medicine from hell

Just to keep things up-to-date: https://www.psoriasis-association.org.uk/forums/topic.aspx?ID=3806

Haha yea sorry I posted this here originally then realised this was more of a psoriasis section than PsA so copied it over. Thanks for putting the link!

For your interest, though. I also reacted dramatically to Methotrexate and the team couldn't believe I wasn't a heavy drinker - they ended up asking how many bottles I was drinking in case I didnt understand units. - I'm a light drinker. I came off it immediately and they didnt suggest I went back onto it.

Hi Lizzie, Thanks so much for that, it does show that the advice they give varies scarily by the practice. I stopped drinking years ago, and it was never that I drank hugely, so it isn't that for me either. I was so shocked when they told me to just start it up again after everything - it is clearly causing me harm. It just makes me not trust them at all.

I was on MTX it ruined me, made me so ill I was feeling sick for like ever, affected my liver so came off that! I am now on ciclosporin and even though I have sickness and cramps etc it is so much better!!! Good luck if you are not happy with MTX keep on at your GP thats what I did.

I recall that my Mother's neighbour was prescribed MTX for her arthritis (she was 95 or so). For her the results were phenomenal, she had no pain and her manual dexterity increased massively. It seemed like a miracle treatment. Her bloods were checked monthly - samples taken by the district nurses (not sure if that is still their job title) , but after 9 months she had to stop taking it - the blood results were showing problems with her liver functions, and I guess that the judgement was that the effects on her liver were more of a priority than the debilitating effects of her arthritis. I think that whatever treatments are prescribed, for many there is a requirement for ongoing monitoring and some side-effects can be considered worse than the condition being treated.

This is very interesting and helpful, thanks everyone! I think I will ask to try an alternative next review time. And if they still insist on the mtx, they need to take the time to explain why it is ok, and how I can reduce the side-effects, instead of just expecting me to carry on this way!

Seems abit strange starting at 20mg of MtX, i can remember starting low and being built up to the 20mg. In my opinion gold standard is an under statement for MtX. Good luck.

Sorry just reading your first post again GS, is this your GP making you take MtX with the issue's your having? If it is i'd be contacting your rheumatology nurse and asking for guidance/appointment with your consultant.

Hi guys, not sure what country you are in but the meds process in UK seems that you have to try each treatment. Psoriasis seem to follow this process and I expect its simular for arthritis: - Topical treatment (if skin related) - Light treatment (puva, uva etc) - Cyclosporin (recommended max 1 year of use) - MTX After MTX you have to have a certain severity of disease (criteria) to get funding for the following: - TNF inhibitor (like Humira) - Bioligics (like Stelara) You cannot get started on the next treatment until the previous one is deemed as not working or causing side effects that are not acceptable. Topicals, such as steroids cause skin damage and thinning, light treatment can increase skin cancer chances so you can only have so much, Cyclosporin has always been a short term drug due to effects/usually reversible damage to certain organs. MTX is low dose chemo so has some unpleasant/nasty side effects. Then you move to the big boys that direct attention to your immune system TNF inhibitors. Humira for me was brilliant for 5 years, then I started to get some unpleasant things that they could not directly link to humira but were deemed suspicious enough for my neurologist to speak to my dermatologist so that treatment was stopped. Humira can also lead to heartblock which my cardiologist had earlier ruled out. Then we get to Biologics. So here I am now and on Stelara, started during covid (Oct 2020) because in the year after stopping humira (and eating blueberries every day) I was back to having severe disease. So far goodish. Cleared my skin within 6 weeks (amazing) but I have had quite bad finger joint issue within weeks of starting. The joints nearest the finger tips are really sore until the drugs starts wearing off (8 weeks into injection). However, I have clear skin and hair growing back nicely after having taken a bashing from severe scalp psoriasis as well. As a sign off, we are all different, have different side effects, different degrees of severity and different levels of acceptance. If a treatment is not working for you, you need to go back to your Dr and get them to change it (which they can). My dermatologist gave me advise but ultimately a choice. They even offered light treatment again and a guarantee I was already funded fir biologics so could always go back to them. Good luck everyone xx

Hi Sizzy, thanks so much for the info! I am glad to hear the psoriasis is better, that sounds such a battle, and I hope the joint issues improve too. That is good to know that unacceptable side effects counts as a fail - I wasn't sure exactly what constitutes a fail, it seemed a bit subjective and mostly based on the nurse's opinion. That is interesting about the blueberries, I might give that a try too (I've only just started to get patches of psoriasis recently).

Hi GS What you eat can play a part in your skin. If you can for a while, try a diet that EXCLUDES the following and see if skin improves: Gluten White potatoes Onions Aubergine Tomatoes Caffeine Refined sugar and sweetners Alcohol Processed foods Citrus fruits and juices Some people swear by blueberries but does not work for me but still eat them every day lol. For me, if my skin got too cold or over heated it would get worse. Tight clothes and rough material made it worse. Xx

Thanks again Sizzy!! Ahh dammit all the good stuff haha! I am definitely going to try that though, I could do with a bit of a health kick. I have def noticed too that heat makes the psoriasis worse

Good luck x Also, I found some moisturisers made me overheat so bear that in mind xx