MTX and ants: I have been on 15 mg of MTX for 3 weeks... - NRAS

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MTX and ants

Someonesmother profile image
53 Replies

I have been on 15 mg of MTX for 3 weeks after 4 weeks on 10mg and I keep getting a feeling like ants are crawling and biting all over me. It is annoying more than anything but seems to increase each week. Anyone else get this?

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Someonesmother profile image
Someonesmother
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53 Replies
shazmill profile image
shazmill

Hi someonesmother. I also experienced this while on methotrexate. I couldn't stop itching. I had to go to doctors for some cream sudacrem which did help. Take care

Someonesmother profile image
Someonesmother in reply to shazmill

Did it alternate between itchy and a burning sensation? It has just increased all day and every now and then I get a burning feeling on my skin usually on my arms. Driving me batty

shazmill profile image
shazmill in reply to Someonesmother

I had both at the same time. Initicially I thought it was down to fibro condition as burning is one the affects and not RA. However I only experienced it after taking mtx gor RA. I now on salpa skin back to normal.

Someonesmother profile image
Someonesmother in reply to shazmill

Ahh so maybe it is something I need to tell the GP about. the icthies are steadily increasing as is the burning sensations. I have to go to GP Monday so I might ask him about it then. I can't take sulpha based drugs but am on plaquenil and prednisone among other things for other problems. Thanks for your response

shazmill profile image
shazmill in reply to Someonesmother

Your welcome. Hope you get some relief soon. Have a nice weekend.

Someonesmother profile image
Someonesmother in reply to shazmill

Hope it doesn't get worse hahahah. You have a good weekend too. Mine is half over, only one day to go. :(

ThomasFPJ profile image
ThomasFPJ in reply to Someonesmother

:( I have the same experience and when you are out in public, it can be embarrassing !! Luckily we have each other to share our experiences ! It's always good when you look back and are able to at least laugh, I know I been out and itched like I was digging for GOLD, I mean, I thought I was going to draw BLOOD!! ... The UPSIDE, You don't have to worry about personal space out in public, cause when you dig like you got cooties, they give you ALL the Space YOU WANT! :) Much Love, ...Tommy

Someonesmother profile image
Someonesmother in reply to ThomasFPJ

Yep sure do. I am not on MTX any more the side effects got worse and worse and so I have just started imuran and ma booked in to the biologics clinic end of Feb.

Candy profile image
Candy

I would definitely contact your Dr. Hope it's sorted for you soon and you get some relief.

Candy

Someonesmother profile image
Someonesmother in reply to Candy

Thanks Candy. I am going Monday anyway so will ask GP then.

flowers89 profile image
flowers89

Hi im not on MTX but i got that when i started on Hydroxychloroquine even my eyes felt itchy wasnt nice at all it lasted about 2 wks then went away completely hope yours does too,x

Someonesmother profile image
Someonesmother in reply to flowers89

I have been on Hydroxy for about 14 months, so not that. This feeling has been increasing over the last few weeks on MTX and has gotten worse since increasing the dose to 15mg.

2014keffi profile image
2014keffi

This is a major side effect of prednisalone too.

Someonesmother profile image
Someonesmother in reply to 2014keffi

I have been on pred for a long time so I think this is more down to MTX it is the only new drug on the last two months.

I had 15 months of constant itching whilst NOT on MTX. Got referred to Dermatology and had loads of tests including a punch biopsy. Outcome - Nodular Prurugo (itchy bumps). Steroid ointment and moisturisers didn't help. Showed it my rheumy, she said I also had Rheumatoid Vasculitis. Put me on high dose Prednisolone, doubled my Leflunomide and added MTX injections. Itching stopped. But as Pred got gradually reduced. all the itching came back. NP on my back and arms, RV in my feet, ankles and heels. Don't know what they're going to do next!!!

Someonesmother profile image
Someonesmother in reply to

Wow that sounds awful. I hope they can find an answer for you.

I don't have any bumps just itchy and like ants. The burning sensation is mostly on my arms and feet and fronts of my legs. Just weird. I had a bad reaction to lleflunomide and the burning feeling is sort of like how that started.

I expect this is due to RA, so often these things are. However I've got to tell you this anecdote just in case! About 25, maybe 30 years ago, I was eaves-dropping on a couple of middle-aged women discussing the menopause. The only thing I can remember was one saying that she got a feeling like ants crawling under her skin. Years later, when I was going through the menopause, I waited for the ants with some trepidation, but it didn't happen.

It's such a specific thing to say that perhaps hormones could be involved. There again, the woman I overheard could of course have had RA and not realised it at that point.

Someonesmother profile image
Someonesmother in reply to

Hahaha I don't have any hormones I had a hysterectomy a few years ago, so not that I don't think. It has only started with MTX and since I went up to 15mg a few weeks ago it has become increasingly worse, Oh well I will ask the GP see what he says.

in reply to Someonesmother

That's kind of what I meant .... post-menopausal symptoms. I thought I'd tell that tale because it seemed to fit so well, though I'm aware that many of us have experienced having our symptoms blamed on the menopause & if our disease isn't taken into account that can be very annoying!

Someonesmother profile image
Someonesmother in reply to

I only seemed to have post menopausal symptoms for a short period as I had been having them for some years prior to hysterectomy. They stopped a few years ago which is why I think this is directly related to MTX as it has only started since I upped the dose to 15mg. I do agree though that too many Drs are ready to put everything down to menopause as opposed to looking in to what the actual cause may be.

Hello

Yes this can be a contraindication to your medication as it affects your bloods, discuss with your RA Nurse.

BOB

Someonesmother profile image
Someonesmother in reply to

Thanks Bob, it could be as I already have a liver problem and they are monitoring me closely, We don't have RA nurses here in OZ so GP it will have to be.

Hobbits profile image
Hobbits

hello, I cant say I felt that on MTX but did have that feeling on Sulphasalazine, which left me itchy and scratchy. I am not sure what exactly causes the feeling. I would check back with your doc as it sounds like a reaction to the med, they may suggest Benedryl or change your drug.

Someonesmother profile image
Someonesmother in reply to Hobbits

Thanks Hobbits. Yes I agree I was just curious if anyone else had experienced this on MTX. Probably just another drug I may have to cross off my list. So on it goes aghhhhhh

ThomasFPJ profile image
ThomasFPJ in reply to Someonesmother

Someonesmother, Hang in THERE!! I read your post and several of your replies and it hit me, I am the SAME as far as medication is concerned. Methotrexate gives my skin the creepy crawlies and for a day or two after taking it , it makes me feel like I am dying!..There are MANY medications I have tried and am not able to take.. but one I take that you do is the Prednisone!! And I will tell you, for about 6 months I had NO Change in medicine and after that , THEN I BEGAN to have symptoms/reactions and my Doctor and I narrowed it down to the Prednisone..I began to gain weight ( almost 50 pounds!! ) ,, the itching began to get so bad it was non-stop, almost, and my mood swings were awful and a couple of other little quirks with my body made me feel off, SO, I am not 100% for sure, but more than likely that was the culprit. I just wanted to share that with you !! I don't know if that will help or not, but IT DID happen, Some medicines have the complete opposite reaction on me than the intended use, for example, valium will NOT settle me down, it wires me for SOUND, as if I had drank 2 pots of coffee!! and there have been other medicines that DO NOT work with me, but I think you have the idea... GLAD TO KNOW there is STRONG, ENDURING, COURAGEOUS People out there like you that trek on and SHARE with the rest of US!! I truly appreciate YOU and EVERYONE HERE! MUCH LOVE AND COMPASSION..Tommy

Someonesmother profile image
Someonesmother in reply to ThomasFPJ

So far I have been ok on the prednisone I am on. I was given a different generic brand and I had all the things you are talking about and ended up having a car accident so I wouldn't take it for ages until i got desperate. I am the same on opioids, morphine, temazapam etc all make me wired and violently ill/ Can;t take NASAIDS as they eat the lining of my stomach so I am reduced to paracetamol and tramadol.

norfolkjo profile image
norfolkjo

Just a thought

Have u checked it isnt really ants in which case insect repellent may be the answer xx sorry couldn't resist xx

Someonesmother profile image
Someonesmother in reply to norfolkjo

Hahaha norfolkjo. We do have an ant invasion at present, and yes I keep looking to see if they are on me, but no, they have kept t their invasion track and not crawling on me. Funny coincidence though!

ThomasFPJ profile image
ThomasFPJ in reply to norfolkjo

:D LOL!! :)

cathie profile image
cathie

when you talk to GP check whether antihistamine might help. I had rashes on mtx but controllable most of the time. I also developed an allergy to sunlight when I was wearing face cream with perfume in it. Once I abandoned that for Dermol, I could go out in the sun again.

Someonesmother profile image
Someonesmother in reply to cathie

I did think of that might try one today just have to make sure I can take it with heart meds. I already have the photosensitivity from hydroxy so am careful, the MTX has made ot even worse. I didn't go outside yesterday so I think it is the MTX reaction.

cathie profile image
cathie in reply to Someonesmother

as soon as I stopped using products with perfume (most things) I could go out in the sun again.

Someonesmother profile image
Someonesmother in reply to cathie

I don't use any products with perfumes I have pretty sensitive skin, so I learnt early that plain and natural is the way to go. Even sunblock makes me react, but as I have to use it , I have to put up with it until I can come home and not go outside again for the day. I have to use an umbrella now too. I am feeling like some old delicate lady! hahahaha

cathie profile image
cathie in reply to Someonesmother

That's just like me!

Someonesmother profile image
Someonesmother in reply to cathie

My stupidly super sensitive body! Drives me nuts. I first got the photosensitivity in my 20s when I took vibramyacin and the dr hadn't told me about side effects. I was driving and it was like someone had taken a blowtorch to my hands and arms where the sun contacted my skin.

nomoreheels profile image
nomoreheels

Hiya someonesmother. I've been on MTX 5 years now both tablets & injections & never had anything like that on it but I did with hydroxychloroquine early days until I double checked the patient info leaflet which stated sun sensitivity. At the time I was living in Spain & just covered up more in light loose fitting clothing & was never without my sunglasses when out in the sun. I increased my protection factor sun lotion too & it solved the problem. As we've also to be careful in the sun with MTX & as it's your summer now could it be related to the heat/sun? We're asked to report anything different so I would say it'd best to let your GP or Rheumy team know, especially as you haven't been taking it long. Always best to have anything unusual recorded. Hope that's all it is & it settles. It would be a shame if you can't continue on MTX, it can be a very good DMARD I've found.

Someonesmother profile image
Someonesmother in reply to nomoreheels

Thanks Nomoreheels. I do have the photosensitivity from both hydroxy and now MTX so I am careful in the sun. I didn't go outside yesterday, I always feel pretty crap the day after taking the MTX and yesterday was a bad day so stayed in bed most of the day. I have got up this morning and I am even more itchy so I am thinking MTX. I go to GP tomorrow anyway to see if I can finally ditch the moonboot for the heel I fractured 8 weeks ago, so will ask him what he thinks.

nomoreheels profile image
nomoreheels in reply to Someonesmother

Euooo, that's rotten. I think it's definitely time for some answers, especially having known sensitivities. I don't know for sure or even if you're on tablets but some people can react to the excipients in tablets (silicas, colours, preservatives etc) so if you are it might be worth asking if a change to injections could help you with this & feeling cr@ppy the day after?

I hope you're finally free of your bonny boot too but don't jump for joy & risk damaging your heel again if he says it can go!

Let us know what he thinks of your skin problem & if you're free of your boot.

Someonesmother profile image
Someonesmother in reply to nomoreheels

You are right about fillers I cannot take generic medicines as they contain something that doesn't agree with me, so I always ask for the 'real' thing, costs more but at least then I know it is the drug itself not the fillers.

I thought it was normal to feel completely wiped out the next day. I also feel off on the Sunday, not as bad tho, but just push through as I only have one day to do the housework and shopping then.

I would love to ditch the boot tomorrow, if I don't I need a new liner as I have completely destroyed it, it is only just hanging together hahahaha Apparently it may take up to 12 months for it to be better but as long as the fracture has healed I can stop wearing the boot.

nomoreheels profile image
nomoreheels in reply to Someonesmother

My pharmacy do their best to dispense my & h's meds by brand as they're obviously aware they're true to the original formula. They can't always do it with co-codamol & there are definite differences between at least 2 makes I've had so can appreciate why you have problems with generic ones. The difference is remarkable even now to me between injections & tablet but even with 5mg folic acid 6 days I'm more tired & have little appetite but not so much I need to go to bed as you're needing to. I did pretty regularly when I was taking the tablets though found it better when I spread 15mg throughout the day, 2 with each meal as suggested by my Consultant. Oddly enough these past few weeks I've not felt so iffy & even ready for my evening meal but then I've been preoccupied with other things on Thursdays of late so I guess distracted & used up more energy so more hungry!

Someonesmother profile image
Someonesmother in reply to nomoreheels

In Oz we have to pay for our scripts so I get to choose and I choose not to have generics. Had some bad experiences. I take folic acid 6 days too and mostly I am Ok, My MTX is in 10mg tabs so I take 1 1/2 on a Friday night so I have the weekend to recover before work on Monday. I am just so wiped out on Saturday, fuzzy, tired, nauseous etc. and now I get to add itchy, burning, prickly etc. Yay me hahahaha

nomoreheels profile image
nomoreheels in reply to Someonesmother

I know 10mg are an option but would it be an idea to ask if you could change to 2.5mg tablets so you could either spread the dose as I did & have 2 with each meal over the day or even 2 days if your Rheumy would ok that? My Consultant warned I may have trouble if I took them all at night as they'd lie on my stomach & compound the nausea. You're bombarding your system as it is at the mo & it could contributing to why you're feeling so horrible on Saturdays & Sundays. Better still ask if he'd consider you changing to injections, but that will cost you more of course if it's like the UK & tablets are really inexpensive but not so injections.

Someonesmother profile image
Someonesmother in reply to nomoreheels

I don't know that I want to feel that bad all day Friday at work. I struggle by the end of the week as it is. I just looked up and injections are only $8 more than tablets so not much of an issue with that. If it was making a difference I might feel different about it, but so far no change and causing this. I am not keen to continue with it if things don't change. I really can't afford to lose a day every week, it then puts too much pressure on me to get everything done on Sunday and then back to work exhausted on the Monday. Bit of a vicious circle really. I don't see rheumy til next March so I am not keen to keep this up until then.

nomoreheels profile image
nomoreheels in reply to Someonesmother

Maybe ask if you can try 2 with your evening meal Friday after work & the 2 with breakfast & 2 with lunch on Saturday. I think all you can do is ask which he thinks is the best way to take it to avoid feeling so rubbish. Remember it needs time to build up & your body has to get used to the drug. Most of us have had some side effects, particularly in the early days of taking it, it is a strong med after all. Think of it akin to pregnancy, the body thinks there's a foreign body & so reacts to the thing it doesn't think should be there. is there any way of contacting him for a telephone consultation if you're not due to see him til March? I'm surprised he prescribed MTX without any form of contact being that it's known for side effects, particularly when we first start on it. Nobody should be expected to put up with disruptive side effects. Unless your GP is clued up on specialist meds? Not sure how it works in Oz!

If injections are only $8 more at least it's an option you can think about if he ok's it.

We mustn't lose sight of the fact it doesn't suit everyone but I think most of us who stuck with it & lost most of the early problems or they became tolerable by comparison do well on it.

Someonesmother profile image
Someonesmother in reply to nomoreheels

I think I will stick with Friday night taking the lot as I don't want to drag it out all weekend feeling like rubbish and then have had no time to do everything before going back to work Monday. I am under enough pressure as it is to do just basics and then my house looks like a tip because I am so tired and exhausted anyway. Not really an option for me.

My GP is pretty good, I certainly wouldn't say that about most of them here though. I am in big trouble if he retires. I can ring the rheumy's practice if GP thinks it is warranted.

I don't think losing a precious day out of every weekend is a tolerable side effect for me when working full time. I just can't afford it as I am getting further and further behind in everything. I can't even go Christmas shopping because I don't have time and I can only do shopping for a max of about an hour at a time before I need to come home and rest. looks like money in a card from me this year.

nomoreheels profile image
nomoreheels in reply to Someonesmother

You know what best suits you. I just mentioned it because it worked for me not taking the full dose all at once. I hope it all works out well & it you get the relief you sound you need. I'm sure they will understand if it's not an actual gift this year. I find younger members of the family prefer money so they're always happy for cash! Or you could try online shopping. I did that last year & it was sooo much easier I'm doing the same this year, well now! I just can't walk the distances any more so it's not worth the extra stress battling on if it can come to my door lol!

Hope all goes well & you start feeling on the better side soon. That would be a very pressie to yourself wouldn't it?!

Someonesmother profile image
Someonesmother in reply to nomoreheels

Thanks I understand some people like to split it up but to me that is just prolonging the agony. I just like to get things over and done with. hahaha I hope it sorts it self out soon too and starts to make some sort of difference instead of prickly, burning, itchiness!! I will look like I have fleas at work.

I do online shopping I actually bought my car online hahah I suppose it is all the little things you need as well for the day, oh well downsized Christmas won;t kill anyone. I actually feel like buying them all a gift card that says you have paid for a well/goat/whatever for a village in Africa. They are not greedy by any means but I think we place too much in what we receive instead of what we can give to others. My kids would be fine with that, I don;t think my mother would be though. My kids and grand kids would be so impressed if they gave a village a goat or well so they had clean water, they all have such lovely giving hearts.

nomoreheels profile image
nomoreheels in reply to Someonesmother

That's lovely. My h & I talked about that last year & agreed it's a good option nowadays with it all being so commercialized but we had negative feedback from certain parts of the family, such a shame they're as they are.

We bought a car online! We made a lovely holiday of it because we had to collect it from Italy so went from the UK to Switzerland, from there to Italy, picked it up & drove through S of France down to Spain then a couple of weeks later drove back to the UK. Great experience & would do it again.

Someonesmother profile image
Someonesmother in reply to nomoreheels

Oh that sounds lovely, what a wonderful thing to do.

I just got the car salesman to drive it up from the south coast about 2 hours from me. hahahah

Sad that some people can be so selfish isn't it. I often feel like shaming them by saying well I got you a present because I knew you would chuck a tanty!

The other present I give is a years magazine subscription to something liken National geographic or something they are interested in like organic gardening etc.

nomoreheels profile image
nomoreheels in reply to Someonesmother

Still, bet it saved you some money! It was a lovely trip & as it was an Italian make the saving we made buying the car there paid for the whole trip & just re-registered it & paid the import duty when it was due back in the UK.

Magazine subsciption is another good one. For about 6 years my h bought me Homes & Antiques & when we moved to Spain changed it to Lancashire Life which was great. I bought him an auto one Evo one year but he didn't rate it so I've not bothered again but I'd not thought of National Geographic for him so thanks, that might just be a good idea for this year! ;)

Someonesmother profile image
Someonesmother in reply to nomoreheels

Haha no just saved me the drive down and back., Time poor unfortunately. Oh well.

well I Like your purchase much better. What a fantastic drive in your new car. Just lovely.

There are so many subscriptions to buy and I like to buy one that they wouldn't normally buy for themselves. Just makes it a gift that keeps giving.

michaelsminis profile image
michaelsminis

Hi Someonesmother,

I'm on MTX injections and likewise get the crawling and burning sensations down my neck and back. Makes it so difficult to sleep as I can't lay on my sides due to hip pains.

I mentioned it to the Rheummy but she said it was nothing to do with the MTX. I pointed out it only started when I began the mtx so bit of a coincidence!

I find lavender soothing gel helps relieve it a bit and calm it down.

Have you had any progress in aiding the symptoms?

Someonesmother profile image
Someonesmother in reply to michaelsminis

I stopped taking it as I had other adverse reaction on top of that.

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