methotrexate - really?
Posted Sun 8 Oct 2017 09.44 by new to it
hi all. I appreciate this site and your posts !
was just diagnosed with Psoriatic Arthritis (waiting for some more blood work, doc thinks I have more than one type combined :-( ) after 3 months of sudden, terrible and multiple joints' pain and a sudden eruption of inverse psoriasis. I know it is not the end of the world but feeling so right now. looking back, there have been a few episodes of knee and shoulder pain and even one small psoriatic lesion that was not diagnosed as such then - also, no doc ever made a connection between the two , neither did I. until couldn't step on my leg anymore bec of knee pain, which led me to the orthopedist who sent me to the rheumatologist who confirms with the dermatologist ... and here I am. ankles, knees (one already needing replacement) , sacroiliac joints,lower back, neck, shoulders, wrists, hands - affected. inverse psoriasis- mainly in armpits. "regular' psoriasis - scalp, face and handpalms, 2-3 lesions on legs. Fatigue! brain fog. IS this all familiar to you?
During those 3 months have tried non steroidal and steroid meds - no relief. some days I am reasonable (i.e. can stand the pain, and there is no severe stiffness) , the majority of the days have terrible pain and stiffness. sitting at the dinner table or the computer for 15 minutes for ex , guarantees terrible pain and stiffness when getting up. the rheumatologist prescribed methotrexate and folic acid a week and a half ago and since then -I have been staring at the pills and the pills have been staring at me .... can't get the courage to start.
From all I have read in serious research and informal forums, this metho' drug does not really stop the disease , somehow works reducing inflammation and pain for about 50% of the people (although if to judge from forums and anecdotes this is highly exaggerated), research actually shows it has no effect greater than a placebo, plus there is a danger of hurting the liver (which you'll know by blood tests, i.e. only AFTER it had already hurt the liver...) and can even cause some types of cancer. It is given as first line, because it is cheap (so cheap that I got it for free in my country which usually charges a lot for meds even within the nat'l health insurance plan) and you must prove it did not work for you at all in order to get the bio meds. so you are supposed to take the pills once a week (I was prescribed 10mgs/wk for a month and then go up to 15 mgs , and add folic acid the day after. if you get sick from it, they'll put you on an extra drug the day before, if it still doesn't agree with you they switch the pills to injection , or try a different med from the same line, in short the will do everything to avoid giving you the permit ( which your doc has to request) for the bio meds. of course there is also all the side effects that scare me,
so.... (and thank you for reading this far);
1. I'd appreciate to hear from folks who are taking methotrexate - what's it like? what made you agree to take it ? I have one friend who screamed at me "don't you dare taking it! it ruined my health!" and another who said he has no side effects and it has saved him. what's your take on all of this?
2. inverse psoriasis - every tip appreciated ! is there anything that should NOT be used ? how do you deal with deodorants? and does psoriasis cause bad body odour?
Thank you SO much for your responses!
Posted Sun 8 Oct 2017 20.13 by Ateasewithit
Hi, literally just joined the association, after reading a post from 5 years back re methotrexate. Let me say i am 63 years old, have had the company of psoriasis since i was 12 and by the time I was inmy twenties I had almost total coverage and have gone through all forms of treatment for this condition - all of which provided limited relief (including metho).............BUT I've learned, as have my consultants, that metho is brilliant at controlling my psoriasis, but I have struggled to convince them that I am happy NOT taking metho weekly, especially during the summer months, and taking it only when I feel the need bring it back under control. I take just 6 x 2.5mg per week..........as I've been doing for nearly 20 years now, with 3 monthly blood tests to check for liver damage, I stress this regime has worked well for me, and I understand it may not work for all sufferers as we all respond differently to medication. But if my experience can help, and give hope to you, and others then I'm content with that.
With hindsight, the only problem (apart from the obvious ones) I've experienced came after several years of PUVA treatment in my thirties, and was told I'd used over half my lifetimes recommended UV exposure and to avoid sunshine...............now 30 odd years later I have been diagnosed with a ridiculously low level of vitamin D, with has all sorts of possible medical problems if left untreated..............thankfully I'm just finishing a course of high content vitD capsules and feeling a lot better than I did a year or so back.
Finally, I've learned that our skin becomes tolerant of all treatments, especially topical creams, maybe that's why metho has been succesful for me, so never be afraid to experiment and find a regime that 'works for you'. Good luck.
Posted Sun 8 Oct 2017 21.30 by new to it
Thank you for answering. ateasewithit !
right now I also have unrelated very low calcium and low vitD . have tried many forms of supplements - no absorption; have you had utterly no side effects with the methotrexate ? also, you mention it did well for your skin. my main problem is the multiple joint inflammation and pain and from what I understand this med does not help it much, it is much better for the skin.
Posted Mon 9 Oct 2017 07.59 by Ateasewithit (edited Mon 9 Oct 2017 08.09 by Ateasewithit)
I can confirm I have had absolutely no side effects / issues with methotrexate. However I now recall that AT FIRST I did take it diligently as prescribed on a weekly basis, along with folic acid, even after my skin was clear.........but after a couple of years or so the effectiveness started to become less - exactly the same as I mentioned earlier - my body was becoming tolerant to treatments. I was then presrcibed Acetritin for a couple of years, which again worked well, but same thing happened. I suggested to my consultant that perhaps I could try metho again - he agreed and I've been back on it for about 14 years now without any problems - the difference is I take it when I need to, not as prescribed, I still have blood tests every 3 / 4 months, and on a couple of occasions these have shown the need for liver scans (2) and MRI scan (1), all produced positive results with no further action taken. But it's worth noting there are factors other than metho which have a bearing on liver function.......alcohol is a major contributor, so have moderated my intake of that over the years - but still enjoy a g&t!
My low vitD levels were discovered a couple of years back by routine blood test, unwisely I chose to ignore the advice given at the time ............which lead me being diagnosed with a level of just 40, instead of a level of around 180/200 (can't recall exact defintion) so have just completed a 7 week course of 40,000 IU per week.
As I understand it, metho was first used as an anti inflammatory treatment for arthritis, and during treatment it was noted to have a beneficial effect upon sufferers of psoriasis. I have never had painful joints, muscle pain or similar (maybe I was lucky) that I could put down to psoriasis...............but in the last couple of years I have suffered from these, accompanied by fatigue, lowered concentration etc. etc...............but these things are now fading since I've been taking vitD supplements. Like a lot of psoriasis sufferers we tend to cover up when outside, which is counter productiveas sunlight is required to make our bodies produce VitD naturally inour skin ( I read it converts cholesterol in our skin, enabling calcium to be better absorbed into our bodies, and that just about everyone living north of Madrid are defficient in this vitamin, predominantly because of our 'indoor lifestyles', and naturally occuring lower level of sunshine. Read up as much as you can about sunlight / vitamin D levels, it really is quite amazing, but remember we are all different, and what works for one may not work as well for another. So persevere with VitD supplements, I can honestly say I feel like a new person compared to the person I was just a few montns back.
I think you are on the right track with VitD, but if you are just buying over the counter VitD it will be nowhere near concentrated enough. If you haven't had a blood test done for VitD levels, I suggest you get one, and for cholesterol too, I cannot comment on 'non absorbtion', this could well be a completely seperate problem. So again, good luck and best wishes for a succesful outcome.
Posted Thu 12 Oct 2017 16.13 by RichardIan
Hi, i have had the pleasure of Psoriasis for 62 years and the related Arthritis for the last 5. So far nothing works.
Hello,
The specialist nurse i see told me of this site so i thought ice take a look. Had Psoriasis from 3 years of age, I'm now 65. I have had various levels of problems, even went through many years clear in my 20s.
3 years ago just when i thought the Psoriasis was under control using the creams, the Arthritic element reared its head. Took 3 months to get back on my feet.
I take the usual medication, Naproxine, Sulfasalzine and Methotrexate.
While the symptoms are under control for the most part the side effects, especially from the Methotrexate absolutely hammer me.
Nausea, fatigue and the feeling of being spaced out are with me for at least 72 hours after the injection. A fairly common symptom so I'm told.
I guess its a case of accepting the lesser of two evils and getting on with life.
Wishing you all the best for the future.
Posted Thu 15 Feb 2018 08.23 by new to it
hi all, thought to update you - tried 3 mos of methotrexate. extreme diarrhea , nausea, fatigue, worsened the psoriasis and brought NO relief in terms of the joint pain; meantime found out that the back bone is affected to :-( am awaiting a change in meds. offered Arava and am afraid to start . the diarrhea that stared with the metho has subsided but not completely and am afraid to worsen it again which is a common side effect of Arava. seeing the rheumatologist in a short while/ the joint pain is at times excruciating. it is always very painful to sit down, get up, stand, lift anything that weighs more than 1/2 kg.
Posted Thu 15 Feb 2018 08.50 by Ateasewithit
Hi new to it, so sorry to read your update. From what you say it appears you are battling psoriasis and complications on a number of fronts and I hope you find a treatment suitable to you. Guess I was in the 50% for whom metho worked well.. Good luck and best wishes to you.
Posted Thu 15 Feb 2018 21.54 by new to it (edited Fri 16 Feb 2018 21.35 by new to it )
thank you ' Ateasewithit/ I apporeciate your warm thoughts/
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