Has anyone taken methotrexate????

Since about december last year I have been suffering from some kind of weird eczema, dermatitis psoriasis thing all over my hands and feet. Up to now we have been treating it with oral steriods (prednisone- started at 50mg a day, i am now just coping on between 15 and 20mg a day) but while they are keeping it at bay- it doesnt take much to trigger a break out of itchy bumps all over my hands and feet. (washing dishes, touching nappy wipes...)

So my dermatologist has been at me to wean myself off the steroids coz they have apparently really bad side effects, but taking nothing is just not an option so she has suggested a drug called "Methotrexate". Its medicine which will effect my immune system and should solve the problem.. she told me to have a look on the internet and i would have to have a few blood tests, a chest xray and be monitored closely while i take it.. but her exact words were that if it was her.. "She would rather be on the methotrexate than the steroids"

So i looked and OMIGOD, i think i looked at the wrong site coz the second line stated some of the side effects may cause death... it went on to basically scare the life out of me, i looked at a few other sites and they all basically back up that its a pretty full on drug, but they dont all scare you with death!! There are pages of side effects and a whole list of things not o do while taking it and things that you cant have had if you want to take it. To me from my research, the side effects of the steroids are minimal compared to this, however, this drug will most likely clear it all up completely rather than "just keep it a bay" and i would be able to use my hands again!! But still, i think my dr is loopy to rather be on this than steroids which yes do come with some side effects, but never once did anyone mention death!!!!!

So i am supposed to go for my chest xray next week and i dont see the specialist again until next month so i am just trying to gather as much info as i can before i see her and decide what to do.

The other thing that does kind of play a part sadly is cost.. we have no private health insurance, and no health care card (we fall into that cool little finanial area where we earn too much for one, but cant afford the other!! :wall:) so i was also kind of wondering if anyone out there knows how much the drug is (i am guessing it would depend on dosage etc though)

TIA for any responses!!!

Mathotrexate has many many uses! It is used as a treatment for ectopic pregnancy to sometimes avoid surgery, it is also used in Multiple sclerosis treatment as well.

It is a very potent drug but can work wonders for treatments.

I hope it works for you.

Thanks feeb, i did a quick look on BB and found thats what most people had used it for (EP)... part of me is so scared to tak eit, but another part is sooo completely fed up with my hands that i would be willing to take the risks!!!!!

i have just messaged BW to come in and post - she was taking MTX for arthritis

I take it for my psoriasis. I have been taking it on and off for 3 years now with huge success. It can be quite a nasty drug and some people do experience side effects, but I never experienced any myself. I am just about to go back on it as I rest over summer and take the MTX over winter. I usually have a dosage of about 20mg which is pretty conservative. I think you will find that you will see a good result from taking it and it is definitely worthwhile. You will also have to take megafol folate tablets as the MTX leeches folate from your body and if you don't take it you will become deficient. You also need to drink a load of water on the day you take it as it can be very toxic on your liver and kidneys - which is what the blood tests monitor and you will need to have them monthly. As for costs, the MTX costs $18.20 for a bottle of 30 tablets - I don't have a HCC to get them cheaper. The most expensive part is the cost of the bloodtests. The Govt changed the rules about bulk billing of pathology tests ordered by specialist Drs and this includes dermatologists. From memory the last bloodtest I had done cost about $114 and they will send you the bill for that, so when you get it, take it straight to medicare to get the cheque from them and then pay the difference. I got lucky with one of the Pathology women and she would put it through as being a repeat test and I only ever paid for about half of them. You may even be able to organise for your GP to be the one to order the path tests to avoid having to pay upfront for them. Anything else you need to know about it, just ask - I'm more than happy to help

Methotrexate is an immuno suppressant so it has to slow down the immune system from producing things that are usually helpful in making the body heal. Sometimes however the immune system can actually compromise healing for instance inflammation.

Inflammation can 'over react' and make the problem much worse which is what you see in arthritis and skin conditions such as yours.

Anyway..methotrexate does have its side effects but in small doses once (maybe twice) a week it tend to be 'safe' especially for a person who isn't riddled with lots of other more serious health complications.

It sounds like you don't have many other options to help treat your condition as methotrexate is a last resort medication and isn't usual used as a first line of defense thing.

If you are really concerned enquire as to the dosage..maybe you can use it in conjunction with another medication?

Good luck :)

ETA: After reading Trillians post- yes definatley go to the doctors for a slip for blood tests. You may not require them for a long time though depending on how long your on it :)

Haven't really read through the replies, but having used both prednisone and methotrexate and having the methotrexate damage my liver, I still want to say - GET OFF THE STEROIDS!!!

Basically, prednisone strips calcium from your bones making your risk for osteoporosis much, much greater. My rheumy was flipping out over me being on 20mg of prednisone daily and had me taking special calcium supplements. I tried to stay at 10mg or under, but I was on prednisone continuously for quite some years. I see the effect on my teeth - fillings falling out and crumbling because the tooth has been weakened - I think I'm going to be dealing with that side of things for a while. I'm also at a stage where I'll deal with being in agony and unable to move rather than take the prednisone because it makes me angry and aggressive. Last time I took it was actually for an allergy that had my eye swelled shut. I found myself in a rage where I wanted to throw my son into a wall. I reduced my dosage much faster than I was meant to (but because it was short term this time, that was ok) and I simply flat out WILL NOT take prednisone again.

Now... the methotrexate.

Yes, it's a scary drug. Yes, it's used in chemotherapy - and that's what a lot of the sites you would have been looking at were probably talking about. You'll be taking it at much lower doses than a chemo patient. It does lower the immune system, but that's the way it works - your immune system is going nuts and doing stuff it shouldn't and you can't suppress the immune system to stop that without stopping your immune system from doing stuff it should be - if that makes sense. The big thing I would suggest - lots of hand washing and have hand sanitiser pretty much everywhere. Be absolutely anal about sanitising before eating, before touching your face, before dealing with food. If your kids are in day care, do everything you can to build their immune systems. I keep Sam in day care and I have to rely on his immune system to protect me (I'm no longer on mtx, but I am still on immune suppressants - stronger ones now).

You will need to have regular blood tests to keep an eye on your liver function. I've heard stories of one doctor telling their patient "don't worry about blood tests, just one day you'll wake up and you'll have turned yellow and then you'll know to stop". Scary. Monthly blood tests and they'll pick up any issues long before you turn yellow and long before permanent damage is done to your liver.

You will also need to take folate supplements. Speak to any doctor about folate supplements with mtx and you'll get a different answer on the dosing regime from all of them. You will most likely want the 5mg megafol tablets. I started with the lower dose general ones (can't remember the dose there!) and I had terrible trouble with nausea and diarrhea for about 2-3 days after I took my mtx. Switched to the higher dose folate and that became more manageable. It is important that you start slowly (I started on 5mg the first week and we increased by 2.5mg each week until we got to 15mg, stopped for a bit, then went to 20mg), it helps you manage the side effects. I'd also suggest that you take the tablets at night as they would knock me around something shocking. In the early days (I started when Sam was 8 weeks old) I would fall asleep, sleep for 12 hours and not hear a thing... So DH was obviously dealing with Sam over night! But it was just that first night. I'd be sleepy and nauseated and generally out of it the following day, so again liked to have someone around on that day to help with Sam, and would avoid driving. After a while, I had none of these issues and my sleep after mtx was normal, I was still a little fuzzy on the day afterwards, but could cope. You may not be effected this badly, you may not be effected at all.

I must be lucky that I was through a rheumatologist - I get a blood test form every 6 months, and he has repeat blood tests on that for me. They are ALWAYS bulk billed. If the dermatologist-ordered blood tests are going to be super-expensive, get your GP to order them and copy your specialist in on the results. My specialist copies my GP in so he has huge files of blood test results, but that's helpful - I have everything to take to a gastroenterologist tomorrow.

My liver issues aren't uncommon, but there's no guarantee that it will happen to you as well. We know my problems were caused by the mtx (my liver started to get upset at 17.5mg, so we took a break but then had to push the dose to 20mg in order for me to qualify for a different line of drugs), but I was on at least two other liver-toxic drugs at the time. The liver issues have continued as well, so it's certainly a bit more complicated than "mtx trashed my liver" for me.

The final thing - you absolutely MUST have some form of reliable contraception. They prefer the OCP, implanon, mirena, etc. Something hormonal, they trust it more, it seems. Methotrexate causes horrendous birth defects (and miscarriages) so they insist on good contraception, and if you do wish to have another baby, minimum of 3, preferably 6 months off mtx and continuing the high dose folate tablets through this time before you even start to TTC.

If there's anything I've missed, feel free to ask. I know I have a different condition, and in the end it wasn't controlled by mtx, but it did work initially and it worked WELL.

BW

Thanks everyone!!

BW- that is loads of really usefull stuff to know!!! Thank you!! I will be taking a tablet every week and she did mention the folate, but never mentioned i might feel off, so i will be taking the tablet sat night so DH is home with us on sunday!! Very useful to know!! Just in case!!
I am looking at getting a merina put in, i havent been able to because i was also getting infections from my hands (staph) and it meant my body would most like;ly freak out about it, so i will be looking into that, we are 99% sure we are done in the baby making business so i am not too worried about those side effects at the moment!

So i guess i will be going for my chest xray then!! I think i will give it a go, but i am sure i will be asking loads of questions once i start lol!!

Oh and my derm could bulk bill me the first lot of tests. will it be different for the next ones??? I may see if the gp can do it instead, i am pretty sure everything is getting sent to her, i just havent been back there since i started seeing the derm.

Thanks everyone for your help!!

One thing I forgot to mention... If you vaccinate your kids, you need to be really careful if they are given a live virus vaccine. Rotavirus was fun - that was two weeks in gloves to change dirty nappies, and I still caught it from Sam once. MMR was also stressful, but we coped with nobody getting sick. The chicken pox vax - we skipped that and will worry about it when Sam's older if he doesn't manage to catch them.

Immune suppressants are scary, but they are also life-changing.

BW

Thanks - yeah DD will be due for her 12 month ones in a few months... I might delay them a bit - or actually maybe i will do them early, before i start the meds.. I might look into that actually. I see the Dr on the 9th of June and DD is 12 months on the 3rd of July.. I might look at getting them done early then I am ok for 6 months with out having to worry! Thanks so much for sharing all your experience!! It has been really helpful!!

So how are you going now that you can't take the methotrexate?? Are you managing your arthritis ok??

I've been allowed to go on to a different class of drugs all together. They are called biologic agents or tumour necrosis factor alpha blockers (but could be inhibitors). I have an injection once per fortnight, and I'm actually doing quite well with it. Unlike the mtx, they have started working very quickly (did anyone mention that it may be 6-8 weeks before you start to see results from taking mtx?). So after my very first injection I actually had my first pain-free day in years. Get a few more injections in and I'm almost making it to the end of the two weeks before I get sore. I inject tonight and I've woken incredibly sore, but that's ok. I know relief is coming, and quite soon too.

I've just found out I have a liver condition which means I can no longer take things like prednisone and must avoid all non-steroidal anti-inflammatory drugs, so I'm now down to only paracetamol and codeine for pain relief, so it's a good thing I've got these biologics going or I'd not be able to move at all. There's very strict rules for who qualifies to get these drugs - two injections have a full cost of $1774, but because of my PCC I only pay $5.60. Could you imagine paying that much for medications every month?!?!

BW

That would be crazy to pay that much!!!! No matter how good it was!!

So if it takes 6-8 weeks to have effect. would that mean i would stay on the prednisone until it starts working or i would have two months of essentially nothing?? (coz that would cause serious hand blisters and stop me from doing basically anything!!!) I think i should pay you the $100 buck a month i have been paying my specialist lol you have had more info in two days than she has given me in nearly six months lol!! Although I know its all down to rememebring to ask questions.. i still walk out of the rooms and then ten minutes later i kick myself coz i have forgotten to ask something!! Even when i write it down!!!

Ohh on a completely un medical related queiry.... did the methotrexate (i keep going to write meth as an shortening.. but it just looks wrong lol) help with any weight loss??????? I have been slowly stacking on the kg's after DS, adn then again after DD and now i just still keep putting it on. i have stated excercising and it slows down the weight gain, but doesnt help me loose any.. so just wondering if maybe its somehow related and if maybe the meds might help a little with either me not gaining any more and maybe helping me loose some!!

If it were me, I'd stay on the prednisone until the mtx is starting to work - but you'll have to talk to your specialist about that.

The weight gain is quite simply down to the prednisone. In my experience, while on prednisone you gain weight. Exercising and watching your diet can slow it, but I've never been able to reverse it until I'm off it. I imagine at your dosages it would be fairly similar. I don't think the mtx will help with weight loss on its own, but it should allow you to get off the pred and make it easier to lose weight. I've also been stacking on the weight (even without pred!) and now find myself weighing the same as my highest weight during pregnancy. It's depressing, but I'm now getting to the point where I can start exercising again - need to start slow and gently, but I know I can start to do something about it now.

BW

If it were me, I'd be asking your Dr what he thinks you should do regarding taking the steriods at the same time. Personally, I found the MTX worked quite quickly - don't forget that BW is taking it for a completely different issue and for her circumstances it may have taken longer to work. Within 2 weeks of taking it I found that all the redness on the plaques had nearly gone and within a month I saw a remarkable change in the plaques and they were all but gone in most places - some of the larger areas were more persistent though and did take up to 2 months to clear up. But I had a severe guttate flare up and had psoriasis over 80% of my body at the time.

It is the type of drug that you really do need to try and then find the right dosage amount. I am on a large US forum for psoriasis and some have found a small dose works well, some found they need a larger dose and for some it doesn't work at all. You really need to be asking your Dr these questions because we can only tell you our personal experiences which will obviously be quite different to yours.

Yeah Trillian, i will definately check with the dr about what to take when. At the moment the steroids have it pretty under control-ish.. as in i have only small hard lumps on my hands and no where else, and they arnt all peeling and red and exposed as they have been. The finger tips on my right hand are a bit tender, but all in all they are nothing like they have been- but mind you i can go from nothing to full on blisters and bumps in a day or so.. so i would say that fingers crossed the MTX will work pretty quickly. The only delema i have though there is that as soon as i stop the steroids or drop down to anywhere below 10mg, i break out.. so I could be in for a week or so of transition where they will get worse before they clear up totally kind of thing, and i will be checking with the dr to see if its ok to maybe keep using the steroids for a week or so, and at the very least drop down to below what i ahve been taking maybe...


Its good to go to the next appt armed with some personal experience info and some questions to ask.

Which forum are you on trillian?? I found one that i think was american but it didnt seem like people frequented it that much so i stopped going there myself!

Well i took my first dose last night and so far so good!! I took them right on bed time, and they did make me a sleep a bit deeper, but nothing too crazy, and no nausea!! YAY!!

I am really glad i talked to you girls about it too, i was armed with loads of questions for my dr (all written down so i didnt forget them!!) and i feel good about starting the meds!

I am to keep taking the steroids for a few weeks until the new meds start to work, and she did say realistically it may take a few weeks to a month for them to really take effect, so fingers crossed its the start of something good and soon i will have normal use of my hands again!!!

Great to hear, Starbright! I do tend to the extreme side of the range of side effects if I get any, but it's good to know the worst and be prepared rather than having it hit you out of left field. What dose did you start on? I started with 5mg and didn't get much nausea at first but as my dose increased it got worse. But I wasn't taking the high dose folate at that point, so that probably had something to do with it!

BW

I had 5mg last night, take folate today, then next week i move up to 10mg. What dose of folate were you on? I am just using some i had left over from pregnancy (which i just checked is actually folic acid.. IS THIS THE SAME THING??? EEEEEK???? Just googled and i think its ok) which is 5mg tablets.