Methotrexate

Posted Wed 14 Sep 2022 08.38 by Rads68

Hi all you P sufferers I know this has been asked many times before but after working my way through all relevant lotions, potions and UVA/ Uvb, I'm now about to start Methotrexate. Awaiting bloods and Chest x-ray results then its decision time. One day I'm going to do it then the next day I'm not . Very concerned about side effects and my partner and I do like a wind-down drink at the weekend. Also difficult to get to blood checks in the week. Please please help me decide. Thanks in advance . Paul

Posted Wed 14 Sep 2022 08.56 by Rads68

Re. the above, or should I continue use of the UVB mini lamp I've purchased. My consultant has advised against this, as is to be expected. Cold showers, blueberries decisions decisions. Or Methotrexate.

Posted Wed 14 Sep 2022 12.06 by rapture83

Hi, I just updated my own post there, I only started MXT 3 weeks ago and like you enjoy a few drinks over the weekend with my wife or friends…. Hi Guys, I thought I would give an update on this since I started it as I noticed a few people were thinking of doing it or have been doing it for a while. I just took my 3rd weeks 10mg this morning, the only side effects I seem to have had so far is the day after I take it, a slight headache and feeling kinda rubbish but only for a few hours and it's nothing that bothers me, it's just kinda there. I have seen no progress so far but I didn't expect to as it's only my 3rd week, my bloods have came back totally fine also. I'll be staying on 10mg until my next dermo date which is about 4 weeks away. One thing I was worried about was my liver/alcohol, I mentioned this in another post. I was at a wedding last weekend on the Saturday, I must have had at least 8 pints of beer and I also had 2 beers the Friday before hand, I probably shouldn't has so close to starting MXT but I guess I just got carried away in the moment enjoying myself, well I had my bloods taken the Friday after that and they came back Monday there completely fine. At that point I told my doctor what I had consumed and did say that I didn't think it would be the last time as I'm quite social in my lifestyle etc....my doctor told me I shouldn't have it heavy on my mind, she understands that people can get carried away at the weekend but that's what the regular blood tests are for, if the blood tests show that there is some damage then that's when they inform us to slow it down or come of MXT. She said unless you were hammering alcohol constantly it should be fine but if it wasn’t the blood tests would quickly pick it up and a change would be made. Does anyone else still try and have a social lifestyle like myself at the weekend? Sorry if I sound like I have an issue with alcohol here, I only tend to have a couple the Friday and a few more on the Sat but nothing else any other days. I mean, should I consider coming off this which the lifestyle I have at the weekend or just go with the flow and reply on blood tests telling me I’m ok or to stop immediately? I’m only repeating what my doctor said to me, I take this for P only, not PA or RA which I think already effects peoples liver before MXT is even considered. Thanks

Posted Wed 14 Sep 2022 18.45 by Steview
A P sufferer for over 30 years, through good and bad times.

My opinion for what it is worth. For anyone who suffers P/PsA that wants a chance to live a relatively normal lifestyle I.e healthier skin If you are offered mtx and are anxious about taking it which is natural, due to side effects or having to cut down on alcohol consumption surely isn't that worth it to stand a chance of better quality of life? Sure you have to have blood tests, every three months once established, that can't be too inconvenient. I wasn't a heavy drinker before taking mtx but even one beer or wine on the night of taking tablets, I had a headache the next day so may have had an odd drink midweek rather than weekends. It didn't bother me much. If you choose against mtx then that may also rule out alternatives for similar reasons. All down to personal choice at the end of the day though.

Posted Thu 15 Sep 2022 12.38 by Rads68

Thanks for both your replies. I think I'm going to give the MXT a go. Worse case scenario I can always stop it and as you say regular blood tests will pick up any potential problems. Watch this space, thanks again,

Posted Thu 15 Sep 2022 13.13 by rapture83 (edited Thu 15 Sep 2022 13.20 by rapture83)

Yeah I think you should give it a go, I’m on my 3rd week and have had next to zero side effects and on talking to my doctor again yesterday for a catch up she again assured me to not worry about the alcohol/MXT worry UNLESS I was drinking heavily DAILY! which is never ever the case, she said most stuff you read online is over the top and to not worry too much about it, my original blood tests showed that my liver to be 100% healthy, if there was an issue it would have been picked it up, she again assured me that the blood tests pick up the slightest change in your organs, if that’s seen then they need to change stuff up but she said she’s never had anyone with liver issues etc…who live a normal life and she’s been dealing with MXT for many a year. If for the sake of a few MXT pills once a week week and 1 Frolic Acid pill every other day allows me to stop using creams and handheld lamps that don’t even clear everything up anyway I’ll be absolutely delighted! Like you if I start to see any issues in my blood tests or anything else I’ll stop it and move onto something else but as it stands I intend to continue with MXT and live my life as normal. Hope this helps!

Posted Fri 16 Sep 2022 05.53 by Rads68

Thanks ever so much for taking the time to convince me to give it a go. Nice to know we’re in it together. Knees, elbows, ears, beard area., and backside covered, with p spots gradually appearing down my legs and on shoulders. Will keep you updated.

Posted Wed 19 Oct 2022 10.22 by Knoxy

Hi Everyone I am new to this forum, but just wanted to say that I am on mtx 2nd time round was on it for 5 years before covid, when covid struck, I decided to come off it , as a result of that I had major flare up and got lot more than I had previously, so back on the mtx, so far so good it seems to be helping it's slow progress as it takes time for the mtx to get into the system, I still use the creams which I think keeps the skin moisturised and try to eat healthy, I do have the odd tipple and if I am at a function etc I might have more than I should so to speak but I don't beat myself up over it , end the day we are all human, so everything in moderation. As for side effects of taking the mtx, sometimes the odd headache. hopefully one day they will find a cure.

Posted Mon 31 Oct 2022 11.20 by redsquirrel

Hi Methotrexate was the miracle worker for my ps. I have been on it for 5 years and just have a glass of alcohol once a week - it really wasnt a hardship to switch to non alcoholic drinks. However I have a sensitive allergic immune system and cannot get on with a different brand of methotrexate - the hopital say it has no control over the brands. I have had what I think is an allergic reation to the pills - I was on 20mg wtih folic acid 6 days a week - went down to 15mg. I had difficulty breathing and had rapid heartbeat - I really scared myself so I have decided to take a break and will consult with my hospital in December about alternatives or trying out cyclosporin for a while again. Other side effects which have worsened are the exhausion and fatigue - I keep fit but the muscle fatigue from just walking up steps - its a challenge! At the end of the day our immune systems are all different and I suppose we just each have to try something and see what happens. Please look after your liver and your lungs. These pills are toxic - unfortunately - they do seem to affect my breathing a lot ..but like I say - we are all different! I may try methotrexate again but it would have to be the other brand - I know I cannot get on with this one...we will see....winter cover ups and hand make up here I come! oh if anyone knows a good body camouflage make up - my hands are covered in spots - please let me know! thanks best wishes

Posted Tue 15 Nov 2022 12.38 by redsquirrel

Hi Ive posted before - methotrexate WAS a miracle drug for me in relation to clearing ps only for about 5 years...I did suffer side effects from lethargy, chronic muscle fatigue, upset stomach and breathing problems/chest infection. But - I am quite sensitive to chemicals and preservatives etc so my experience will not be yours. The side effects were difficult for me. The plus side was amazing - my ps totally cleared up for about 4 years - the odd breakthrough. It let me go on holiday and live a normal life without feeling need to put on make up or hide away. My own update is I needed a break from metho after 5 years and a different brand gave me heart palpitations plus my ps was coming back and I was on f0lic acid 6 days a week - it is heaven to be off them in terms of my organs just seem to be working again the breathlessness has gone Im not falling asleep during the day and I can climb more stairs without needing a rest halfway up! The minus side - my ps is back - with a vengeance. So too is my arthritis - you know metho is used to treat arthritis also... So my future management plan - may be - going back on metho or cyclo...just for short bursts if my dr agrees...I just found the side effects of ever more higher doses of metho over the years too difficult and life impinging plus as others have mentioned - I think my body just got used to the metho...and it stopped working as my body compensated somehow... As to the alcohol question - again - it comes down to our metabolisms! we are all different - I just need one glass of fizz to be merry! I think your body will tell you - if you have had too much alcohol - and if you are watching your bloods and being monitored regularly I think you should try to carry on your social life as normal - we all want normality! Life is a risk - this drug is poisonous - but in different ways to different people so - take the risk! If its too much - you will be told by regular testing and you can then cut down your alcohol - everything in moderation? best wishes to you all and thank you very much for your posts - Im finding this forum so helpful and insightful - I am not alone!

Posted Tue 15 Nov 2022 13.23 by Rads68

Red squirrel, many thanks for your posting. I’m still undecided on taking MXT or Cyclosporine, trying to alter diet before deciding. Your update is appreciated

Posted Tue 15 Nov 2022 16.06 by redsquirrel

Rads68 - thanks! yeah - try everything! good luck! its all about finding the balance you can live with - making small changes can do you the world of good... there are no rules - and im gonna really try to find out about different medications and great experiences - turmeric seems to be a common good one! - best wishes!

Posted Wed 16 Nov 2022 11.15 by rapture83 (edited Wed 16 Nov 2022 11.27 by rapture83)

Thanks RedSquirrel, appreciate the replies! How long were you on MXT until you started seeing your psoriasis go away? My situation is that I’m currently taking a break from it until Jan when I may give it another go until I go on a beach holiday in June. I was on it for 3 months for guttate psoriasis, first month was 10mg followed by 2 months of 15mg, I seen almost zero improvement and if anything I started getting more guttate spots in different parts of my body, including my bloody toes! The new spots are mainly small spots but are noticeable and red. My arms from my elbow to my hands were developing more also as well as my legs, more than before anyway and it was already not a good sight! The only way I would get any sort of slight improvement (I.e - wear shorts at the gym) would be if I also used my enstiller foam a few times a week but really the whole point was to not have to use that at all! My derm told me to keep using it tho. There is also the alcohol aspect in my social life, I’m a binge drinker, I tend to have a have a few on a Friday night after work, kids in bed etc… but on a Sat I am a binge drinker, all or nothing, it’s just my social life with my wife and friends…anyway I’ve been getting my bloods checked every 2 weeks and the results have came back every single time absolutely perfect, I’ve not changed my lifestyle at all! I have however felt slight throbbing around my liver area and sometimes kidney area after a weekend, it may be in my head that’s causing this but then again might be what my lifestyle is like, the bloods are fine tho but they might not be picking up the finer details, I don’t know! My last Derm visit I was open and honest about my lifestyle and explained the slight throbbing, the reply was that the bloods are totally fine and this may be in my head that’s causing this but I shouldn’t be too concerned (im in the UK where it seems dermo’s/doctors seem a bit more laid back it seems) This however has been causing me some slight anxiety that I’m causing damage and with December coming up (Christmas, New Year etc…) I decided to come off it while I’m still on a low dosage and then possibly start again in Jan and change my lifestyle a bit. I have now been off MXT for 2 weeks and strangely my psoriasis looks paler, I’m not flaking as much or itching and feel a bit more free, this could however just be a coincidence and I’m having a good week or 2 with my psoriasis, we all get that then a week later it’s normal. Not sure what I’m doing is advised or if anyone has any thoughts on it/understands my decision! I have my next derm appointment in 2 weeks and my bloods again this Friday….Again I’m not against starting MXT again in Jan and giving it more time, just felt it was doing more damage than it’s worth?! Thanks guys

Posted Wed 16 Nov 2022 11.19 by Rads68

Really interesting that. It’s the social aspect (weekend drinking) that is one thing that’s stopping me from trying systemics. It shouldn’t really be that way should it but we have to live a bit.

Posted Wed 16 Nov 2022 11.35 by rapture83 (edited Wed 16 Nov 2022 11.37 by rapture83)

Yeah Rads68 I mean it kinda sounds like your an alcoholic or something typing that but it’s not the case, I work Mon - Friday 9-5 and on a Friday and Saturday like to enjoy myself, that’s really it for the week. I updated my post by the way on what my dermo said to me about it when I was honest and upfront as if it was a problem I’d be better without it but the reply more or less was…..your bloods are spot on, you drink a Friday and Saturday but it’s not as if you are drinking heavily every single day, if that was the case then we’d have to stop it or we’d see something. As I updated in the post I’m from the UK, it seems a totally different view from US dermo’s, not sure why, is it because of insurance and dermos being sued in the US if anything goes wrong or is it that UK dermo’s are completely way off the mark with it, it seems strange.

Posted Wed 16 Nov 2022 11.50 by redsquirrel (edited Wed 16 Nov 2022 11.59 by redsquirrel)

Hi Rapture 83! My ps started to improve at 10mg - sorry I cant remember how long it took but not long I think maybe 2 months? My dermo increased the dose to 15mg and that dosage was enough to switch it off - it was great for about 4 years. It then started to come back - I was put onto 20mg. Not much difference. But my body just couldnt tolerate the upped dose and as before I had a scary reaction to the dose and the brand of metho. I came off. I just needed a break - my body was telling my I needed a break. To give metho a go - you need to commit. Your dosage will be increased steadily under medical supervision...it should work. The side effects are listed. You may or may not get them - to varying degrees. The thing I pick up from you is your love of a beer or two! And when I was told I had to cut out alcohol - I was devastated! I had not realised how much I thought I wanted it in my life and I only drank occassionally! We take it for granted we can enjoy drinking. BUT - I didnt miss it at all! There are loads of alternatives at bars - non alcohol beers, lime and soda is what I went onto but I did start to allow myself a few glasses of wine on a friday....and I certainly did not miss the hangovers the next morning. It really did change my life for the better...but I cant tell you what you to do! It really is up to you. If you think you cant cope without alcohol - you can! - but if you think you cant - then I guess you cant commit to metho??? There are good reasons why drink is not advised - and it will interfere with the effectiveness of metho... over to you! Have a think about it - you dont have to decide now. DO raise all these issues with your dermotolgist! like how long before you see results - they are the experts and of course your experience and metabloism is unique - thats why they monitor you. Metho is a toxic drug. Best wishes! Please talk to your dermo though - I am NOT an expert and this is just my own experience - everyone is different. It is difficult making these decisions I went through the same anxiety about whether or not to commit - so that is completely normal - its ok to worry about it! we should be worrying as it is a big decision - just put your health first and talk to your dermo.

Posted Wed 16 Nov 2022 12.07 by redsquirrel

Rapture 83...sorry I didnt meant to imply you couldnt live without a beer! If your bloods are all good like you say - keep on doing what youre doing! Keep enjoying your life - esp your social life! best wishes.

Posted Tue 6 Dec 2022 15.50 by rapture83

Thanks for the replies, absolutely not, I knew where you were coming from, your totally right! :-)

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