Methotrexate not working yet.

Question:

Irv, Great to hear that you are already doing so much better!!!! I know several who have been on Neoral (Sandimmun Neoral here in Norway), and they have so much positive to say about this drug even if it is a "tough drug". Neoral has the power to change people’s lives, that is for sure! We (my derm and I) discussed a possible change to Neoral recently, but have (for now) decided to stick with Methotrexate. I have an appointment soon to get an ultrasound of my liver, as I am not willing to have a liver biopsy because of the dangers with such an invasive procedure since I have Ehlers-Danlos Syndrome too. If the ultrasound shows anything, we will also order a scintigraphy (like a bone scan) of the liver too. These two tests should be quite good at showing the state my liver is in. I have now passed the 2 gram limit of MTX after being on it first about two years and this time three years in April. Dave, I am not all that surprised that you don’t have any effect of the MTX yet. First of all you are on a very low dose for skin psoriasis, second it often takes longer to kick in. My experience is about 12-14 weeks. Maybe it would be a good idea to up the dose quite a lot until it kicks in and gets your P.  down to a reasonable level before you start tapering it down to a lower maintenance dose. My experience has also been that (at least for me) it is much more effective if it is injected. Maybe you could ask your doc about a change to injecting it subcutaneously? I am injecting 10 mg weekly. It does not keep me P. free, but it is much more manageable – I have less and it is not so aggressive. Right now I have forgot a dose, and I’m flaring. Last night I had to take one of my "itching pills", because I itched so terribly, no chance of getting any sleep with that itching.  Right now I have just taken two allergy pills in hopes that it will alleviate the itching without the drowsiness the other "itching pills" causes. I slept until noon today because of that one pill I took last night, that and the new pain medication I’m on, I guess. Wonderful to wake up without the normal joint and muscle pain!!!! — Best regards / Med vennlig hilsen, Aase Marit ("Aw-Se-Mareet" from Norway)

Response:

>It occurs to me that if you have been using potent >steroids on an on-going basis then the the MTX is >having to counteract the rebound from these. This could >certainly be the reason for the worsening you have >mentioned over the last two years – if you stop using >skincap it ALWAYS gets worse. >So try, hope, pray but DONT give up.

The steroids I’ve used in the past, with the consent of my derm, on mu "privates" and groin areas were mildly potent (clobetasone, not the ultra potent clobetasol) and then usually 3 or 4 applications and is was cleared for weeks, so I’m not sure about rebound effect here.  I concede that I may have rebound from skincap but evern then I was using it judiciously, suspecting all along that steroids were in it (I got my derm to get it analysed roughly the same FDA found out about the clobetasol). I would only use it sparingly. No, I believe that the reason for my P worsening in the last two years is that before then I would go on 2 long holidays a year to the far east and soak up the sun..(this would completely clear the P for about 3 months each time).  Two years ago I had the stress of becoming a father for the first time, no more long haul holidays to Bali (no more hot holidays full stop!) and I gave up (successfully) smoking which was a shock to my system after 20 years of smoking 20 a day. It just came on like a steam train all over my hands and palms and feet/soles where it had never appeared before.  If it was a rebound from skin cap, then 4 courses of UVB (never as good as the real thing in my experience) and 5 months on cyclosporin and now 8 weeks on MTX have failed to knock it back. I’m hoping that a higher dose will sort things out or may be combined UVB/MTX. Thanks for your response anyway — Dave Bentley

Response:

Paul Hi and thanks for your comments. I’m going to ask to go on a higher dose and if that fails after a few weeks I may consider another course of UVB as I have the same model UVB lamp at home that the BUPA hospital in Leicester has (bought it second- hand with new bulbs from Dr Honle UV Technologie in Birmingham who supply hospitals etc (2000 ukp thogh…ouch!) and Its been 4 months now since I last had a dose. For people with busy lives who can’t get down to the hospital 3 times a week for UVB treatment, I would suggest you ask your derm if he would agree to you buying a unit for home use. — Dave Bentley

Response:

– Hide quoted text — Show quoted text -> Hi All > I’ve now been on methotrexate at a dose of 10mg weekly for 7.5 weeks > with little of no improvement (my hands may look less angry, but the > number of lesions is the same and my legs, and all over my feet and in > my armpits/groin/penis are, if anything, worse).  After 15 years my P is > now the worst it has ever been and I’m not sure why. > Was it because I gave up smoking, quit skin cap, became a father all at > the same time 2 years ago?  I don’t know, but as well as being > unsightly, this P in my groin and armpits is actually getting very > uncomfortable, never mind the negative affect it is having on my sex > life and the fact that cycling which I like to do to keep fit actually > makes it worse around the groin.  Treatment with a mild steroid/nystatin > cream which once would put it into remission in that area for weeks, now > just puts it into remission for only  a few days > I’ll be seeing my derm in 10 days time and will probably be told that > the dose needs to go up.  Even if it does eventually clear up I’ve read > that a lifetime dose of 4.5g gives a 25% risk of Liver > cirrhosis…great!   I guess this means that MTX will be a temporary > treatment  rather than a lifetime treatment. > This disease is a real bummer.   > What experiences have other people had with MTX.  If they didn’t clear > at 10mg what dose did they need and how quickly did it start to work.

My 13 year old son has had P and PA for 4 years now and been on Dovonex and most other topical treatments until the Derm gave up and suggested MTX some 3 months ago. After 2 weeks agonising (I have followed this NG for years now) over the side effects and risks we agreed. He is on 10mg a week in a single dose and improvement started after 2 weeks. I think hes been on it for about 10 to 13 weeks and although not completely clear (we cant ask for miracles can we!) the worst areas (the arms, legs and groin) are almost clear. The chest and back have small spots (looks like guttate which is how he started) but the large plaques have gone. He does suffer from side effects – mainly loss of appetite and tiredness especially on the day of taking it and the day after but for the moment he is prepared to put up with this. The problem with MTX is that it works slowly. An increase in dosage would also help but not instantly. Strangely the MTX has not helped the PA. His toe nails, which were really bad, are now back to normally. The lifetime dose is a bummer isn’t it. The derm says that if we reach complete clearance we stop the MTX – and wait to see what happens. All in all though it has definitely been worthwhile even if we have to stop tomorrow – we are currently back where things were 3 years ago and those 3 years have been a steady slide down the slope. It occurs to me that if you have been using potent steroids on an on-going basis then the the MTX is having to counteract the rebound from these. This could certainly be the reason for the worsening you have mentioned over the last two years – if you stop using skincap it ALWAYS gets worse. So try, hope, pray but DONT give up. — Kevin Campbell Northumberland England The home of Hadrian’s Wall

Response:

Dave, Hello. I

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