I’ve been taking methotrexate now for 12 weeks in the hope that it will help to heal my eczema and allow me to stop using steroids, which have stopped working for my skin, but that’s another subject altogether. I’ve touched on TSW or topical steroid withdrawal here before but watch out for much more in the coming months.
Methotrexate is not a drug to take lightly. It is used to treat psoriasis and also cancer in much larger doses. It works by dampening the immune response, so it can cause those taking it to have a lower immune system, something which worried me greatly when researching whether I should take this drug.
Am I just another guinea pig?
It often feels like this, when you have a life long condition and medication isn’t working, you get offered this, and that and another stronger drug. I worry that I am being given something that my doctor is not convinced will work, however he was confident that it would be very beneficial. The advice is to take Methotrexate for at least three months to see if it will work.
Is it working for me?
I’m really not sure yet. Parts of my body, mostly the skin you can’t see is remarkably clear. My back, torso, upper arms, shoulders and legs are amazing. Really clear skin and hardly any itching. The skin feels soft and is getting better by the day, because I’m well aware that what I think is good skin, my doctor often thinks is not! You get used to your normal and my normal had become anything but good healthy skin, which is why I’m now eligible to take this drug to help with my skin.
My hands, lower arms, face and neck and particularly the area around my mouth have been awful. These areas were bad before I started this medication but initially it feels like these parts of my body are far worse. This could be because I pretty much went cold turkey on the steroids when I started taking methotrexate.
My hands have been like crusty, elephant claw hands, dry, thickened skin, itchy and flaky. I’m pretty sure that I can see healing though. There is clear skin between the thick dry patches. And whilst this feels like a very slow and painful process, it could just be working…
My face is horrendous. Swinging between red and sore and really really painful and dry, flaky and irritable. Then a few days of relief before this cycle continues.
Important things you need to know before taking methotrexate
- The dose is vitally important. You MUST check the dose. I am on 10mg once a week and I take 4 x tiny 2.5 mg tablets. Always check before taking to make sure you’ve been prescribed the right dose and are not taking too much. This is potentially a dangerous drug. e.g. My most recent dose, taken this morning was a 5mg table so I took two instead of the usual 4 tablets. It is very important to check every time that you are taking the correct dose.
- Always take it once a week, on the same day, every week – so I now have Methotrexate Mondays to help me remember
- Take Folic acid a few days after you take your dose of Methotrexate as this can help reduce any side effects. Methotrexate can cause an increase in homocysteine, and folic acid helps to counteract and minimise the effects, should this happen.
- DO NOT DRINK ANY ALCOHOL – this is also really, really important. If you don’t think you can handle this then don’t take Methotrexate. I’m not missing the booze at all
- You’ll need to have regular blood tests – so far I’ve been having fortnightly blood tests to make sure I’m not reacting badly to the drug. So far my
Side effects – Methotrexate or TSW?
Overheating and night sweats – I am having issues with night sweats and day sweats, particularly mid morning, but this is manageable, especially now I am working from home and can sit quietly or get myself cooler far more easily than in busy air conditioned hot stuffy office. The night sweats happen about an hour after falling asleep. I wake up without fail in a confused itching state, my face a raging ball of fire and often feeling hot all over. I have an air purifier in my room with a fan so this can help to cool me down in the night. I’ve found the best way to break the cycle is to actually get up, get some water, drink, calm down and go back to bed. I can usually get back to sleep after I’ve done this.
Pain is also an issue. I think this is caused by the steroid withdrawal, but when I get a flare, the pain in almost unbearable. I wake often in the night with the same pain, but it is short lived. It flares along my lower jaw, around the face like a crackling electric barbed wire mask but usually subsides eventually. This happens first thing when I wake up too but again, subsides. I don’t know if anyone else gets this?
Stabbing pains – these occur any time and are distracting and irritating but I’m getting used to them. I try to manage this by stroking my arms, which is where they mostly occur. Or hold the skin where it hurts until it subsides. Distracting when they are coming every few seconds. I can usually ride out a wave of these… but it can take an hour to subside.
I don’t think I have any side effects other than these, which could be nothing to do with Methotrexate. I have no effects to my blood, which is being checked regularly.
I will keep you all posted with my healing… trying to photograph progress but I’m really bad at getting photos to really demonstrate what it looks like. My skin overall does feel softer and I really hope that it will heal…
Bless you x
Thanks Alison. I’m doing OK, just feel I have to share all this stuff. It’s a calling. A passion. I want to help others.
https://scholar.google.co.uk/scholar?hl=en&as_sdt=0%2C5&q=omalizumab+for+eczema+&oq=om
Omalizumab is now being used see link. . With asking doctor. It was first used for asthma in the allergy field.
Hi Marlene, thanks for the comment. I notice you work at the Devon allergy clinic. Have you seen this work for Eczema? Have you also had patients with TSW?
I do hope this works for you. All the best!
Thanks Mary, me too! Thanks for the comment. I will keep you all posted… There is way more to learn about reducing inflammation in the body.
I have been taking methotrexate for my eczema for almost three years now. I started with 2.5×6 pills a week, and now down to 3 pills a week as my condition is way better than before.
I am also applying mild steroid cream on skin where necessary.
I tried different medications before and experienced bad drug withdrawals after I stopped taking them. This is why I am on methotrexate now.
What my doctor say is that the dosage I am on right now is really low and side effect is minimal. However, I am doing blood work every other month to make sure the drug is not doing anything bad to my body. So…. so far so good.
As to side effect, I was losing hair like crazy in the first 6 months, my then I gain them all back afterwards.
Losing hair! Eeek! I just want some peace from this relentless skin issue. It is ruling my life. I’m coping but I’m tired of coping and just want to wake up and have to cope with all the other normal every day stuff, without the ritual each morning just to get out of the house. I think I am improving but time will tell.
Dupilumab, a biologica agent safe and well tolerated,, is now being used for treating Atopic eczema. Why don’t you ask about it to your Allergy-Dermatology specialist?
I have heard of it. I’ll ask at my next meeting with my specialist Luisa. Thanks for the heads up.
I wonder, Ruth, if it would help if you made sure you are producing enough of your own natural steroid – cortisol. I often find people with adrenal hypofunction (ie low cortisol) have more pain etc of course because they are naturally low in their own steroid production. Boost yours instead of taking steroid meds??? See here: https://purehealthclinic.co.uk/adrenal-fatigue/ x
Gosh Micki no one has ever mentioned this to me before… I don’t generally suffer hugely from pain as a rule. I am quite tough, eg. from falls, cuts and I’m very clumsy and often inflict pretty nasty wounds on myself. I don’t generally feel too much pain from things that we know are painful. But this skin pain is something else. I will look into this. Thanks so much. On another note, I am learning to accept the pain, the sensation and to live with it. At least it is not incessant itching. Just pain. I can live with pain easier than I can live with the itch it would seem…
I wish you didn’t have to learn to live with either!! OK, look at your adrenals – they are bound to be low given all the treatment you’ve been on I should think. It’s a standard thing I look at in atopy etc where steroid treatment helps – make sure you have enough natural stuff! Logical really. x
Hi,
I realise this has not been commented on in a few months….
Your story sounds extremely similar to my son’s, age 4 years.
He began taking methotrexate for TSW (and we applied topical steroids for quick results), for 2 weeks.
I am wondering how you are doing now?
Hi Leah, well it’s now at about 9 months since I started taking it in Jan/Feb but had to stop as I got shingles, which was awful. So for now I’m not taking Methotrexate. I’m terrified that the methotrexate caused the shingles as it kind of reduces your immune system. I need to do more research. My skin had cleared remarkably well actually, although not entirely but topical steroid withdrawal can take years. I know I probably can’t fast forward this process, but for now I’m not on anything. My skin has flared a bit but so far I’m still in control. Fingers crossed.
Hi Ruth,
Sorry to hear you had shingles, I had a wee rash of it a few years ago, very painful. Just wondering how you’re doing now? How’s your skin? Thing is I’m considering oral immunos and am wanting to know as much as possible about different ones. I used protopic very sparingly on my face and then stopped after all I’ve read and also red face etc, I also have felt the itchy pain thing around my jaw and also cheeks and think this may have been due to protopic. Have been trying to taper off steriods but my arms particularly are pretty bad. Would you recommend methotrexate?
Ishbel
Hi I’m starting methotrexate tomorrow . I’ve had excema since I was a child. It flares up now & again. This last flare up has been going on for over a year. I’ve had all the usual steroid cream. Even had a course of UV. It didn’t work. I just need to sleep. So I hope this works for me….. I’m 55 now.but most days I feel & look about 80 with my ugly cracked skin. Il let you all know how I get on.
Hi Lynne, I hear you. I too feel that the treatments have aged my skin dreadfully. I don’t know if it can heal and repair but here’s hoping. Good luck with methotrexate. Make sure you get the blood tests done and checked regularly. I still don’t know if it caused me to have shingles but I had a wonderful 9 months of feeling almost normal again. I’m 52 now and managing without any medication but that took 5-6 years of struggling with flares which I think were TSW related. I’m in a much better place now but still get flares occasionally, just on less and less of my face and less and less severe. The rest of my body, where I actually used the topical steroids is miraculously and incredibly the most amazing soft skin I’ve ever had. Just the face continues to heal.
You can drink alcohol on methotrexate, just keep it below 14 uints. And don’t binge drink. My dermatologist told me to drink what I usually drank, so she could tell if my liver could take that and the methotrexate. I’ve only been taking it for two weeks so far, and it’s been ok. As for shingles, I had a preemptive vaccination beforehand, which I requested as I would not have taken it without.
Good call re the vaccine. I hadn’t known about that risk for shingles so would have done likewise had I known. I don’t drink that much anyway, but didn’t have any conversations with my specialist about monitoring liver function! You’ve had some great advice and that gives me so much hope for others. I hope it helps, I started to see improvement pretty quickly. good luck