Sometimes Google is a good thing

Hello, have recently had a bad psoriatic arthritis flare , and am due to start Methtrexate in a couple of weeks. Read some scary things online, perhaps a little knowledge is a dangerous thing! but then I wouldn't have found this site if I had'nt gone looking. I am a bit shellshocked as not once in my appt with the consultant did she tell me that I would have to take Methotrexate for life,which seems to be the case. Nor did she mention taking folic acid, I shall ask about that at appt. I have been really lucky to get to 58 with no serious illnesses, but still I must admit that I am finding this scary - what an age to discover I'm chicken-hearted! Wishing everyone a good day .

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  • Hello, let me say first: Welcome to this site, such wonderful people here!!!

    We have a lot in common...So you are chicken-hearted?..Well I'm a chicken-shit!!!....This desease is scary, but once we find the right "cocktail" of meds we will be OK...I'm 50 yrs old and I am thankful that my children are grown and I had a painfree, healthy life as they were growing up...I can not express enough how "gob smacked" I am as the young mothers, suffering with RA survive raising their children.

    I wish you well Chicken Hearted

    your buddy the "Chicken Shit"

    Sue....lol

  • Hi and welcome, I to discover this website on the back of a leaflet that my consultant gave me. No 2 people are ever the same on this journey. And as for methotrexate for life is not always true. You can stop and start it. I had a break from it for 2 years. My journey of this illness has been over 10 years now. This site has been a great resource, support and wealth of knowledge to me. Goodluck on your journey. Wishing you well. Sarah .x

  • Your lucky if you have reached a good age without any ailments darling,but that said i am sorry you have have this disease. When the drugs work you can live a fairly normal life. That said some people have trouble getting certain drugs to work on them and they have to try different drugs.

    Having said all that we are a great bunch of lovely people who are well looked after by NRAS and we do have a good laugh as sometimes thats al we have laughter and it gets us through.

    W|elcome from me and i look forward to hearing more from you.xxxxxx

  • Welcome x

  • Methotroxate is a powerful drug. I have always taken mine on. Weekend as I found it made me very tired. It should be followed by folic acid with a day in between as it is a drug that affects your immune system. You will find that you will have regular blood tests to check your liver levels and others. I have now come off this med as it was affecting my liver and have been off for two months and to be honest feel so much better in myself. It made me slightly depressed but did not realise it until I stopped taking it and it made such a hugh difference when I came off it that people noticed. Regular non impact exercise is the key, walking especially. My Nurses are surprised how well I am coping without it and am only currently on sulphsaldine. I get stiff on a morning and evening legs and hands but I can cope with that. We recently got a dog so when my husband is away o have no choice but to walk her. I find I can walk a great distance now. My legs are stronger and I feel healthier. Also watch your weight, the less you carry the better for your bones. Good luck with the Methotroxate don't be afraid to say if it doesn't suit you because there are alternatives but we are given this because it is the cheapest for the NHS.

  • Welcome Edwinaslintyhands,

    This is a great place to find advice and support from others who know and understand what your going through.

    I have suspected PsA. I'm also about to start on Methotrexate,I've been taking Sulfasalazine since January with minimal benefits so my Rhuemy has suggested I switch. I have the same fears and worries about taking it but when comparing with the damage this disease can do I'm going to give the meds a go. If it doesn't suit then I can try something else. I'm also experimenting with my diet to try and help myself. I figure that being proactive has got to be a positive step.

  • Wow, what a lovely friendly (and damn quick off the mark!) lot you are! As always things don't look as bad now as they did at 4 in the morning when I couldn't sleep. I do think you are right, being pro active makes you feel like you're taking back some control. Am walking my dogs, albeit slower and later in the day, and off today for slimming world group, as I'm trying to control those curves (OK, lumps and bumps more like) thanks again to you all X

  • Hiya Edwinasplintyhands (great user name, hopefully the splints will only be short term!). Welcome, pleased you've found us & hope you find it helpful being here. We have quite a few members with PsA, they'll be along soon to welcome you I'm sure.

    I'm on MTX & done well on it for 7 years & diagnosed for 8 so it's been my longest serving med though it's not necessarily a med that's taken for life in all cases. Much depends on how you react to it & if it helps in bringing you under control. It is known as the gold standard treatment in the UK & therefore often the first DMARD we're started on though consideration of other DMARDs is made if it's considered few joints are affected, how mild the disease is at diagnosis or if symptoms are mild enough to not require it. I'm not so sure that it's first line treatment due to low cost, whilst it's true tablets aren't expensive neither are some of the other DMARDs but MTX injections are in comparison & there are many of us here who inject? I would think it's more likely due to it's efficacy at damping down the autoimmune diseases it's used for.

    It's highly likely once you start MTX you'll also be prescribed folic acid, though it was remiss of your Rheumy not to mention it. The reason being MTX targets the overactive cells we have but it's not able to ignore the cells we need so it can take our folate levels too low causing the side effects you've probably read about. Supplementing with folic acid replenishes what is lost so this is why the two are prescribed together.

    You're not alone in how you're feeling, it's a blow & especially so as you've been fortunate & not had any other health issues. I'd only ever needed hospitalization in my 20's & that was out of the blue, then at just turned 48 that all changed!

    If you need anything we're here, ask away & we'll help where we can. Have you looked through the NRAS site? Maybe pop on & have a rootle round nras.org.uk

  • Hi. I have been on methotrexate for 14 years and found it to be very good with only 1 side effect (hair thinning but not noticeable by anyone else)) for a short time. It soon settled down. Good luck with it.

  • Hi, that is a long time on Methox I have hair thinning and seems to go frizzy

    How long for yours to settle down. Taking six pills once week, gives me hope thinking mine will stop falling out. Thanks for your info.

    Regards Ladyinredxx

  • I can't honestly remember how long because it is a long time ago now. It may have been a few months and probably felt longer but in hindsight it didn't seem long at all. I hope yours settles down soon. x

  • đź‘Ť thanks will hope for the best and try to stay positive.

    Ladyinredxx

  • Hello and welcome to the forum , we are all here to help each other and lift spirits when we are down ,hope your feeling better soon xxx

  • Hi Splintyhands, Compared to me you're a chicken. I'm 85 years old, and have been taking MTX and Folic acid for the last three years. So I've lost a bit of hair, but that's a minor problem. The joy of still being able to walk, shop, and manage my life independently is worth all the methotrexate in the world. Just don't let the medication stop any of your activities. Best of luck. XX

  • I also have psoriatic. Arthritis plus scoliosis for more than a year, also take Methotrexate on Monday and Folic Acid on Friday. When asked if I wanted to take Meathx I decided no way by my next appointment with Doc the answer was yes, I think we all have a little bit of chicken in us but it's good to know others feel the same.

    Did they also tell U that no drinking alcohol or sitting in the sun too long, I was told just an acasional drink and wear factor 50 when in the sun. Spent last Xmas in Spain

    fine till Feb then got a bad rash, Spanish Doc's gave injections creams no go, so I stopped all med's for six weeks I felt bloody great, came back home soon taking Methx again. So if U deside to try Methx hope it works for U but U can always stop taking it.

    Good luck. Ladyinredxx

  • Hi and welcome!

    I too have psoriatic arthritis started three years ago when I was 26.

    Best of luck with the MTX really hope it works for controlling your flares.

    There are some great posts on here for tips on managing MTX

    Xx

  • Hello and thanks to you all for the info and tips. I did know about no alcohol (shock! Horror!) but not about sitting in the sun too long. Hope I don't have to much thinning of hair as I actually have very little to start with! Take care

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