Skin problems and MTX intolerance

Hi! I'm new to the boards and this is my very first post. To celebrate, I'm making this a double question. Oh, and I have RA

Question 1 is about skin issues. Does anyone have any experience with itchy, ITCHY skin? Mine is intermittent and has only affected my arms. Little hive like flares pop up any time it sees fit and the itch is so deep that they bleed and scab over and over. I have scars! Very unsightly for this lady. Any input welcome.

Question 2 is about MTX. I have been taking this for what seems like forever, but is only 5?weeks and I take w plaqunil. I started the pill form form with the most vicious side effects that is intestinal and explosive diarrhea and the worst and huge mouth ulcers that I just couldn't eat or even drink without significant pain and it's so swollen that you bite it over and over again. Yeah, you guys know.

My rheumy switched me to injections the next week, and while better, still ugly side effects.

I know it wasn't long enough to gage effectiveness, and I think I gave it the old college try, but I just couldnt face another week of possible side effects and missed time from work, I told her enough already.

I've read so many posts about how well people do on it, I haven't read any with intolerance to it.

Again, input welcome.

What is the next drug of choice?

32 Replies

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  • I suffer from itchy skin, but not as bad a you, which started after being on enbrel for a couple of years. My GP prescribed Fexofenadine hydrochloride which is a strong antihistamine which helped a lot. I also changed my washing powder to non bio and use fabric conditioner with the baby on. More recently I have developed psoriasis on my elbows too, which I have an ointment for. Other than that I'm not sure.

    As for the Methotrexate not everyone can tolerate it. I was put on leflunomide instead when I was 18 and had no side effects with that. I am back on Methotrexate now and it was giving me headaches, so they swapped me to injections and I have Folic acid 6 days a week which has negated the side effects. You could also ask your rheumatologist about biological treatments, I'm now on tocilizumab.

    Not sue how helpful I have been but I hope you get it sorted.

  • Hi Kris65 Like you I tried the Mtx pills & had really bad side effects terrible pains in stomach & constant diarrhea which meant time off work. So I thought if I went onto the injection (bypassing my gut) I wouldnt have the stomach pains. But after the 3rd injection I had really bad sickness & again horrendous diarrhea which left me very weak & losing weight. I was on holiday at the time (16th of this month) so my family holiday was ruined I spent 2 days in bed & the rest keeping out of the sun & not eating (no appetite). I am still trying to recover now & still have diarrhea & still off work. I have an appointment to see my Rheumy Consultant 12th so see what meds he will try next.

    I just feel so fed up tired all the time. Staying near the loo. Not enjoying any food at all. Which makes the future look bleak. I just hope I find some medication that eventually helps

    And You Too. X

  • I'm so sorry that you are going through all this, and i totally understand.

    The cycle of the injection, horrid diarrhea, and constant stomach problems. Oh, and I'm still sporting a large ulcer on my tongue.

    With my work absences, I opened a FMLA case to cover the intermitted time off.

    I rely on prayer a lot and I've finally asked my church family to pray for me.

    I hope you and I find a solution soon.

  • Hi Kris, welcome.

    Just to say that maybe it's the Hydroxychloroquine ( Plaquenil ) you are allergic to.

    I suffer from exactly the same symptoms as you with the terrible terrible arm itching and my specialist put me on 50 mg of Certrazine Hydrochloride ( Benadryl) to combat this.

    I take it in five 10mg doses throughout the day and my itching is totally under control.

    I'm on Enbrel ( Etanercept) a Biologic for my RA and I'm not on Mthx as my liver couldn't tolerate it.

    The Specialist said that the benefits of Plaquenil outweighed the allergy.

    Hope this helps.

    Good luck.

    Mx

  • Thank you! Hmm, I'll look into that.

  • Hi

    It sounds like you have exactly the same problem as me, I have what looks like small sores appearing down my right arm and are incredibly itchy and looks very much like ecshma if i itch them they start to weep and eventually bleed, I dont know if this is a side affect from the meds but maybe because of the auto immune condition they are slow to re-act to any creams etc etc, the only way i have found is to try not to scratch them and they seem to clear up on their own i know its difficult not to scratch, I whent to the GP and he prescribed FUCIDIN cream and this seemed to work really well maybe you should try that.

    Hope you find this helpful all the best.

  • Have you tried not using soap? If you saw my reply to Kris65...my GP said stop using soap...use an emollient lotion instead ...& my itchy arms haven't bothered me again!

    Worth a try!

    AC

  • I've tried evrrything!

  • Hi Kris...re your itchy skin....I had exactly the same on my forearms & my doctor insisted it was caused by using soap ....which I thought was ridiculous......but I stopped using soap to shower with...I changed to an emollient lotion she recommended & much to my surprise my skin calmed down & has remained itch free. Don't know if that will help - but it's worth a try.

    Sorry to hear about your reaction to Mtx...I was lucky enough to stay on it for 7 years...99% side effect free , but then it caused severe headaches, dizziness & vertigo....so I had to stop taking it. ...not had much luck with Sulphasalazine or Leflunomide either....heading off to Biologics now.

    Do hope you find the right treatment for you....I feel it's "work in progress" whatever we are taking....nothing seems to work forever!

    AC

  • Thank you, AC can you share the product name?

  • Just paddled into the shower Kris......It's called EPADERM CREAM.

    It's odourless & doesn't lather up, but it did the trick for me....hope it works for you.

  • Thank you so much. I'll look for it now!!

  • Geez, Amazon est delivery date 9/30-10/14.

    Do you get yours online?

  • No..local pharmacy....I'm sure if you go to Boots ( (you are in UK?) or your local pharmacy they will help! I'm sure Epaderm is a trade name...the chemist can look it up & give you another make. I sometimes have something beginning with Aqua???? But don't have an empty bottle to check the exact name.

    Whatever you get...let me know if it helps. Often it's something simple like dry skin from using soap that causes the terrible itching & if you are like me & have finger nails that grow so fast I am always scratching myself.

    One other thing to make you smile....all my life I have had poker straight & I mean straight - hair. But after all the meds I have taken my hair is going curly! My hairdresser couldn't believe it.

  • I'm in Ohio, but will look for it at various sites.

    My daughter is a hairdresser, but only does salon product sales. She hooked me up w a shampoo and also root stimulate, so hoping that will help w preventative

  • Because I have had it in my shower I can't read the ingredients because the print is washed off. I am going to the pharmacy on Tuesday & will ask the pharmacist to let me write down what it consists of.....then maybe your pharmacist can match it with a product in US. I think basically it is an emollient without detergent.

    We WILL find it.. In the meantime you could try any body lotion without fragrance......do you have the make Simple in US?

    Will reply again when I have the "recipe"!!!

  • Thank you so much for taking your time to help me,. I wish I would have reached out earlier, but I always think I can handle it , until I can't. I had a very bad week trying to keep my managerhappy, my family happy and still be an effective leader in the ministry I love serving in. It's exhausting.

    😔

  • No probs! Like you when I have a problem I am DETERMINED to solve it. Luckily I am retired & have no family to look after, so I can spend as much time as I like without anybody needing my attention, hence I don't feel guilty!

    Do let me know when you find a suitable cream...it will probably have another name but will do the job!

  • Thank you, so much! I want to give you a giant hug!!

  • Had a thought!

    Log on to Boots.com...an English pharmacy.

    Search for Epaderm Cream....all the ingredients are listed...you could show it to your pharmacist!

    Good Luck in finding a match in US!

  • Yeah, mine has always been straight, but menopause/post menopause changes stuff!

  • I got really bad itching with methotrexate so was put on a maintenance dose of 7.5 this seems to work - as to mouth ulcers got these really bad with tabs but after a few weeks on injections these stopped even on the higher dose.

  • I have an itchy back, Just across the top above my shoulder blades. I was told by GP to use cream (difficult to put cream on your back I know) and my husband has usually gone to work by the time I remember. I had some Skin so Soft from Avon for when we went to Mull because it is the best thing for midges and I sprayed that on my back downwards (if you can get your arm up that far.) Don't spray upwards or your hair gets very oily. It worked for me, my back hasn't itched since and the spray is very cheap. I hope it works for you.

  • I if you look on QVC (ch16 on Freeview) they have a handy gadget that enables you to put cream on your back...it's an angled plastic "thingy" with a small sponge that is really useful!

    I'm full of useless info!

  • Thank you for that. I will check it out.

  • Welcome to the site. I have very sensitive skin and always trying new creams. I saw another doctor in the practice a few weeks back, she advised not to use soap even though I was only using Simple soap,she prescribed Aveena body wash it has made such a difference and Epaderm for a rash on my right foot and just up my leg. The Epaderm didn't work for this, saw my own doc yesterday and he gave me Dacktacort as he believes its athletes foot ( we had a laught about that, nothing athletic about me for years) I started mtx 3 weeks ago only 10mg the first week wiped me out, with advice from this site I took it in the evening the next week and this week, just a little a tummy upset the next morning, was on Azathioprine for 31 years, it was decided it was one of the causes of my small skin cancers. I do wish you well and hope you find this site as helpful as I have, not long joined, wished I had found it earlier.

  • Hi Kris65,

    When I started the mtx 2 years ago, I had the following symptoms: -

    1. Vomiting and diarrhea - These happened for 2 full days and I was not able to go anywhere because I had to keep myself basically next to the toilet and with a small bucket with me. I went to the GP to get some medication and the symptoms subsided after 2 days of medication.

    2. Hair lost - This happened for few months but my rheumy said as long as it was not dropped in patches then the benefits of mtx would be out right the side effects hence to continue mtx. This problem stopped after some months.

    3. Itchiness and rashes - These happened few months after I took mtx. I had them on my hands and thighs. They lasted for many months. I went to GP and I was given calamine lotion. It worked at first but the problems just came back. I then applied some lotion and it subside and came back too. Not sure how the symptoms finally disappeared for a few months. It came back again after that. I just applied lotion and calamine again. It went off after few months. Now I have them on my hands but they are rashes only and not itchy any more. I just ignore them since they are not itchy.

    Apparently, folic acid can help to reduce the side effect of mtx. You may also find a lot of good information related to RA in the link below.

    healthunlocked.com/ra-warri...

    I hope the information help you to clear your doubt though they may not really help much.

  • Thanks! My MTX side effects were getting a bit better, but I started restricting my food in a major way, so I could get out and get back to work. This is not a solution and I crashed and burned on Thursday and I realized that it's my disease and my body, and I needed to call the rheumy again. I just didny want to be the squeaky wheel, but that is crazy!!

    Rheumy gave me a 2 week reprieve until my next appointment.

    I'm excited to have 2 weeks of feeling normal again.

  • Re: your skin. I have developed psoriasis on my elbows, palms, tops of my toes and inside cartilage of my ears. My RA sent me to Dermatology. That is how I found out. I had the small bump like sores on my elbows that itched like mad. My palms started pealing and the tops of my toes felt calloused and rough. When I would wash my hands or bathe in hot water those areas stung as well. I use a cream called Triamcinolone Acetonide Cream 0.1%. It works great.

    Re: side effects. I take 15mg MTX once a week. Have any of you tried high doses of folic acid? I take 3mg of it daily and I have no mouth sores from the MTX. I still get tired from it. Still have huge dark circles under my eyes, but I can cope w/o injections.

  • Thank you! Yes, I don't have the psoriasis, but I break out with the small cluster of sores and itch. I'm working so hard to get my body working well, but it's been challenging.

    Yes, folic acid I was taking any also a dose of leucovorin the day afte I do my injection.

    MTX works for most people, but maybe I'm not most people.

    It's so challenging to get the people closest to you educated on what this disease really is. I'm not whining, yes I am, but it's so much more than stiff fingers.

    I'm just overwhelmed with RA, family, work, and the ministry that I adore serving at.

    I think it's time to discuss expectations. I can't do all of it anymore.

    I love my job, but it is hard core physical and I can keep up w my male coworkers, no problem!

    So many resentments. I need to start a blog

  • Oh wow I will steal Joan Rivers line...."can we talk?" You need to slow it down some. You sound like me, perhaps type A personality?? I enjoyed being the hard core chick too. I was a firefighter and first responder in the military. Then I was a commanding/demanding boss. Dedicated too. 15hrs a day or more for work. For me it ended up being a net negative. My spouse asked me to quit. Just like that Quit! I did it, but for awhile I was a brutish beast. I had to find out was to be a "housewife." *shudders at that description* My husband put up with me being as he said, "out of my freaking mind." I did weird things like organize Everything! I would get very upset when people messed up the organizing. I mean I still fold different use towels different ways, but that's not over doing it. Is it???

    Now, looking back, quitting my work and doing with less is totally worth it. I have more time for my family and as I progress in age and illness I have really slowed down. You are going to have to come to your own personal terms with this disease. Im glad I have a supportive spouse and I downsized. Boy but there for awhile I was seriously hell on wheels.

  • I wrote a reply but it seems to have gone missing! I think I feel asleep and lost it.

    I'll respond in the morning.

    Strong women!

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