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!!!
very very long story of my hands......
(sorry, just finished my novel.. grab a cuppa!!!!!! :) )
It does sound similar!! It started for me when DD was four months old too, I didnt manage to keep feeding her, it seemed to effect my supply as well as everything else.
All my life I have never had any form of eczema at all what so ever. NONE
Just before DD was born I started getting dermatitis around my belly and stretch marks. It itched like crazy and I just kinda put up with it. Had DD and it got worse, all around my clothes lines, my bra lines and around my belly. I put it down to this special form of dermatitis (which i cant remember the name of now) I got given steroid cream for that and it helped, it all went away all good.
Fast forward two months (november) and I started getting an itchy finger. My middle finger on my right hand. It itched and itched, I scratched and scratched, broke the skin, it bled, it cracked, I itched some more. It was probably four or five hard lumps under my skin. Finaly when I was at the dr for something for the kids I showed the dr and she went oh a bit of dermatitis, here take some cortisone cream.
Well to this day I wish I had just put up with my bloody finger, coz two days after I started the cream, it spread. All over my right palm, tiny little blistery bumps. I thought I had gotten warts or something, thats what they looked like. They were itchy and sore, and then my left hand broke out. Within days they were swollen and sore. Back to the dr, here we tried three different creams, antibiotics, my supply dropped completley and I got AF back, which seemed to make a difference to my hands. In a not so good way.
They started doing this weird cycle with my period. Leading up to my period they would break out in the bumps. They would get sore and red and swollen, I would start bleeding and the bumps would go but I would be left with extreamly dry and cracked hands. Every crease in every finger was a deep cut. Over the week of my period and the week after they would start to heal. Then the cycle would start again. As new skin emerged, so did new bumps. I would run out of antibiotics so off to the dr again, more antibiotics, more creams wait another month. I started having an antihistimine a day (which I still take)
The same thing just kept cycling (only now it had hit my feet too) until February. (so three- four months) in late January my gp (I had been seeing the one gp the whole time almost weekly or at least fortnightly) finaly said it was too much for her and I would need to see a dermatologist. But I wasnt going to get in until the end of march. (yippee- NOT)
Then one night in early feb I was up all night itching and crying, my hands were so swollen- like spread your fingers apart as far as you can, and my fingers were all touching kind of thing. It was also the first time it had spread all over my body- all red and itchy and dry and sore. DH woke up and took me off to the hospital. There wasnt alot they could do, they gave me a shot of antibiotics and I still remember the little asian dr saying "ooohhh sh *t firetruck (but he said ya know) why you let it get so very bad???????? And I was like I am TRYING to get rid of it, nothing is working!!!!
So the next day my husband called every dermi in canberra to get me into see someone right away. The lady I had a referral for and the appt in march could fit me in in two days, but we saw another skin dr that day- which was a costly expedition.
She decided it was a fungal infection and got me to buy some medication that cost $120 dollars. I took one and went bright pink all over.
I didnt take one the next day and saw my dermi that day and she said no way is it fungal- she took swabs told me not to take it anymore, gave me more cream, and my new best friend, the steroids!!! (BTW, i have some really good anti fungal tablets for sale if you know of anyone who needs them ;) )
So I started on 50mg of pregnisone. With in a few days the swelling had gone down, we did wet dressings and all the horrible dry skin slowly literally fell off my hands and feet. It was sooooo grosss!!!!! But underneath was gorgeous fresh clear skin!!!! It took probably two weeks from starting the steroids for it to all clear. My mum had to fly down to help me with the kids coz I literally couldnt do anything with my hands.
The day after she hopped on the plane home, I got the first of the tiny little stupid bumps back. :wall: But it wasnt as agressive, it took longer for them to come up and they werent as bad. But they were still there!!! The final cream I ended up with was Advantan- it was the only one that worked for me. And even then, never made it go away all together.
So I started seeing the derm once a month. She was at me every month to drop the amount of steroids I was taking, I was still cycling with my cycle.. it would come and go, but never got as bad as that night in feb!! But it also wasnt going away, and each and every time I dropped my dose, it came back worse!!! I was a bad patient and I self medicated and kept taking a higher dose than she would have liked. I told her the truth when I would see her, that yes I tried to drop the dose, but it got worse so I upped it again to make it go away! I did manage to drop from 50mg to 25mg.
I also noticed that DD would get a bad nappy rash whenever I was at the peak of the bumps. I mentioned this to a few people who all said it was a coincidence, but I don't know. I started using disposable gloves when changing her and that seemed to help.
My whole life was overhauled. Everything I used for washing, for dishes, for cleaning was changed. Nothing helped. I couldnt find a soap that didnt make me break out. I couldnt even shower everyday because just plain water stung my skin. Nappy wipes hurt like hell. We changed everything. I should have bought shares in cotton and rubber gloves I have been through so many!!!!
My poor DH was lucky he didnt loose his job for the amount of days he had to call in sick to say sorry, my wife cant even pick up our daughter let alone change her nappy or wipe her face, or open a jar of vegemite. We paid hundreds in dr bills and lost hundreds in wages. (sorry just abit of a boo hoo there!!)
Ooohh and I havent even started on the natropath!!!!!!!!
Ok, so in all that after seeing the dermatologist I also saw a natropath. She was good, she sat me down and we talked for about an hour. I felt listened to and that she was investigating alot more into the "Why" than the derm was. She did reflexology on me (this weird thing were she tapped my arm and thought of things and gaged how my body reacted to her thoughts!!!!) I walked away from there with a bag full of stuff and even more money out of my pocket.
Now when I saw her we thought it was excema. She gave me a lot of things that helped replenish skin, and encouraged healing and skin regeneration to help with all the cracked skin and things. Also some stuff for stress which can contribute to skin disorders. And a whole bunch of other stuff. My whole day revolved around whether I had eaten with this medication, not eaten for this one, taken that one or stood on my head and spun around in circles for ten mintues while I took another one. It was horrible!!!!
Then when I saw the dermi again AFTER seeing the natropath- the derm put it out there that it could be psorisis.(She is still undecided on that, apparently i am a combination of both eczema and psorisis) After some googling I discovered that with psorisis, the skin on my hands were multimplying and regenerating at a too rapid pace. Which half the meds that the natropath were also ENCOURAGING!!!!!!!!!!!!! Now I hold nothing against the lovely natropath, she wasnt to know. I had these nasty bumps before I ever saw her, but from what I had researched, half the stuff she had given me was actually feeding what was going on in my body that was bad, not good.
So I got jack of all the med taking and stopped all the natropath stuff and stuck to my steroids. It all actually cleared up a little bit more!!! And thats when I was able to successfully drop the dose from 25mg down to 15mg. But it still wasnt completly gone.. better, but not gone.
So finaly the derm decided that ok, its time to step it up. We had talked about these other drugs and the possibility that what I had was part psorisis and part eczema. And she really wanted me off the steroids. I was scared, I have hung onto them coz they are the first thing that made my hands ok, they are my god!!!! But I know they arnt good for me. I have put on weight from them for starters and everyone I speak to tell sme that they are bad. So these new magic drugs (methotrexate) would help either eczema or psorisis so it was the next step to take.
I got to my appt a few months ago all excited thinking yep, today is the day, only to be told ok, this is what we are going to do, BUT FIRST you need to have a chest xray and a blood test, so come back in a month after you have had them and we will start. So I did all that. Went back two and a half weeks ago and I started the methotrexate two weeks ago. I took a half dose the first week, and then needed a blood test befoe i could up the dose. I wasnt able to get to town for a BT, so i have had two weeks of the half dose and took the full dose for the first time on sat night just gone.
So far, it has cleared up all the random rashes on my body. I did break out on the back of my hands the first week, but its all clear this week. The itching has subsided, but I am still taking my regular antihistime. One night when I dont feel itchy and I find I have forgotten to take it and im ok I will stop!! At the moment I havent had any new bumps on my palms whatso ever!!!!!!!
:dance::dance::dance:
I am also still on 15mg of the steroids. I will try to drop it next week again after my next dose (the new meds are weekly) As mum will be here for a visit, so if they break out again I at least have some help around the house.
BUT my hands are still dry dispite moiturising many times a day. My finger tips are cracking still, and the skin is very tender and sore to touch, but I can tell its making a differnce.
I dont know why it started.
I dont know what it is.
I dont know how long I have to keep taking the medication for, but I am just happy I no longer am seriously contemplating chopping my hands off anymore!!!!
I dont know if I will live with this forever or if it will pass, but its been quite a journey!!!!
Sorry for the novel!! I am sure there is alot more there than you need to know!! lol But once I started I just kept going and going lol!!!! I hope your journey doesnt get as horrible as mine has been!!! And I hope your mysterious rash just goes away!!!!!!!
xxoo Kat