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LUPUS UK
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methotrexate

Got told the other day that i was starting methotrexate seen as azathioprine wasnt helping at all. Anybody have any side affects when taking this please let me know??x

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The only side affect i had was it wiped me out the next day. This only lasted the first two weeks. I have had a lot of mouth ulcers too. Hard to know if it's the methotrexate or not as I was getting them before, although they seemed to get worse. They did up my folic acid to 3 times a week to try and counter act it.

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I tried a couple, including azathioprine, b4 methotrexate. No problems at all! Trouble is, if something is wrong with u it's hard to know why, is it Lupus, is it meds or is it neither! Not easy to tell so I often say it's neither and move on. Positive mind helps 💚

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Hi EllieJo

I was moved onto Methotrexate for the same reason as yourself. I started on the tablets for about a month, I was sick and had the runs for most days, and my hair fell out more than normal.

They moved me onto injections. The day I have the injection, i'm on the loo for the whole day with diarrhea, it takes a few days to get over! Also my hair is still falling out more than normal, its gone dry and straw like and my rashes on my hands and face are a lot worse.

Its only been a few months but it doesn't seem to be making me better or my like easier.

I truly hope you have better luck on it!

All the best, Sarah x

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hope things get better, thank you x

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I'm on 20mg once a week and take folic acid every other day which has stopped the mouth/nose ulcers but my hair has started to thin and snap also feels dry, my nails are easily brittle and my skin is constantly dry. I've been on it since August 16 and like others I still get tired alot.

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God I hope I don't get prescribed this as I already have IBS that makes me sxxxt through the eye of s needle ,brittle ridged nails, thin hair falling out that it blocks the vacuum, I will be Bold as I DISAPEAR round the u-bend,!

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I felt a bit foggy mentally for a while. My haired thinned out and then grew back curly. Other than that, nothing .

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Hope for me yet then?

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For sure !!!!!!

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I've been using it for a little more than a year and my reaction to it varies. First, it caused some damage to kidneys (i have nephritis due to lupus) then my Dt added cellcept and got back to "normal"... those first months I was dizzy and weak the morning after methotrexate. Never diarrhe, nausea yes... sorry all you have it more difficult.

But the last 4 months I feel bad after the medication only if I didnt get enough sleep... sometimes I feel nothing. Maybe the vit D3 I started is helping to counteract side effects? no clue.

Don't be afraid, if it helps that is good! Good luck :)

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Um... damage to kidneys!

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thank you x

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Hello. I haven't tried methotrexate I'm afraid. I'm on 3g a day of Mycophenolate Mofetil. I've been on that since June/July last year. I've got a new Rheumy now and if it doesn't work, we're discussing Azathioprine or methotrexate. 😬 I'm still getting headaches especially and would love less of those and fatigue. One thing I have learnt since my diagnosis is that we are all very different. We have different symptoms and some drugs work for us and some don't. But it means that we have to experiment and see what works for us. I was so ill and feeling helpless last year, when offered an immune suppressant drug I was over the moon. As long as you have discussed it with your doctors or Rheumy nurse and you feel your symptoms warrant further medication, you have to take a leap of faith and try it. I really hope that it works for you with no serious side effects. Let us know what you end up doing. PS lots of people have posted about methotrexate over the years. Use the search facility and look at other people's posts. Arm yourself with as much info as possible. Good luck.

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Of that I will. I get to see my rhumetologist at the end of the month for my first appointment? I will let you know what happens. How do you all deal with the isolation of when your hyper PHOTOSENSITIVE? What coping strategies do have when your​ freedom is severely compromised as your under house arrest during daylight hours?

Many thanks Heather x

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Hello! I don't have time to answer fully at the moment re being photosensitive, but I really want to, in detail, as I've learnt a lot since my diagnosis in 2013. I'll get back to you as soon as I can. X

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Thank you very much. I appreciate all tips. Cheers!

Heather x

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Heather, sorry for the delay.

Photo-sensitivity has been hard to adjust to. Summer is my favourite season and always has been. Plus I have 3 children, who were 9, 8 and 5 when I was diagnosed, so I have had to adjust and cannot hide inside all of the time, it wouldn't be right for them. I have even managed a couple of holidays abroad, much to my Rheumatologist's dismay.

I now wear sun protection tops on every bright & sunny day. I have purchased these in various places. Boden. Amazon. Land's End. Craighoppers. They are also known as rash vests or rash guards. I recently found them in plain white and plain navy, as a fairly reasonable price and have been wearing these underneath t-shirts or cardigans etc. So I look quite normal but have the protection. I will attach a link to one of my recent posts.

Everyone is different and some are more photo-sensitive than others. It takes a bit of trial and error to find the right balance.

If you hold your clothing up to the sun light/window, and the sun shines through it, it will not offer you enough protection if you are highly sensitive. A normal white t-shirt offers only 5 SPF. I have found that clothing is the key for me. I rush out of the door to get my children to school and in fact always seem to be rushing in and out with them and I do not have the time to carefully apply sun cream to arms and legs etc. And I find it sticky and greasy a lot of the time. So I cover with clothing. Usually jeans, sun protection top. I do wear Factor 50+ on my face every day of the year, the sun sense one prescribed by the doctor is good but I wear the tinted one on my face and I get that from Amazon. I am careful when I wear sandals, as my feet do blister and burn quickly, so cream MUST be applied. So if I am in a rush, it's comfy shoes or trainers for me, with no skin exposed.

So basically, the only parts of my showing are my face, hands and head. My face has the Factor 50+ on. In the spring and summer my hands must have SPF 50+ on them, as they have also blistered and burned in the past. In fact they got infected once and took 8 weeks to heal, they were inflammed, cracked and bleeding constantly as every time I did something they cracked again.

I have also recently been advised to wear a hat every time I go out. I get a lot of crusty sores and hair loss on my scalp. I also have an active lupus rash on the nape of my neck. So in order to help get this all under control, I must protect my head more and wear a hat. I have some lovely sun hats and a fedora but at the moment it has been quite windy and I'm fed up of them blowing off and me chasing them, so I am wearing a cap or a cotton beanie.

When I have been on holiday and have less rushing around, I have more time to apply sun cream etc. I always sit under umbrellas and am much more likely to sit inside a restaurant for lunch to get a break from the sun. Last year in Italy I took a UV protective hand held parasol and used this on days out. I also paced myself, so that we did not do day trips every day, one day relaxing and the next out etc.

When we go to the beach here, (we live by the coast) I take my floppy hat, my parasol and have even used one of those beach tents made with SPF 50+ material for protection. We had bought one when the children were little and they would eat their lunch in it or have a nap. But they work for me too, ha ha.

I very much felt that despite being diagnosed with lupus and sun sensitivity, that I should try to carry on as normal as possible for my families sake, for my children and my husband. Life is for living. It's all a bit trial and error, but being as careful as possible too. Of course things might change and I might have to be more careful in the future, but lupus does involve constantly re balancing things. That's the nature of the illness.

Here's a couple of links for you to look at.

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

I hope I have helped a little.

Lupus UK have an information sheet on this too.

Best wishes.

Wendy x

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Thank you so very much for taking the time and effort to help me with this tricky subject?

So far I have learned to apply factor 50 10 hour stuff to every where I can reach including the hands,ears, nose tip,legs tummy arms ect. I wear' a hat and scarf wrapped around like a bee keeper?

I have found I am better as I have more energy on grey days but NEVER take the risk to go with out protection as I figured I was very sensitive immediately?

But oddly, have found that some shops are also a pest ? The lights are making me have head aches,eye pains and temp spikes?

As for protective clothing there lies another issue. I'm plus size and it doesn't exist! I've had a good look. I also bought an umbrella too?

I read a posting by a lady who had gone out into the garden and sat in her indigo jeans to find perminant rash markings on her legs she posted the photos,and I took note to self, light coloured + shiny fabrics reflect dark absorb more so with lupus. But as you point out, light clothing on its own not much cop?

So I'm experimenting with funny hats as I had been loosing my hair in handfuls for a number of years so that it blocks the vaccum cleaner up regularly?

I decided that I need to live life and not hide in a cave. But be very careful. Not take uncalculated risks​ but let's be honest, we soon find out if we have made a mistake, not put on sunglasses or missed a bit as we get sick REALLY quick?

I'm not whining though and am keen to participate in research at Oxford to help the whole of us move forward?

Once again thank you for your sage advice and kindness.

I hope you enjoy the up and coming summer with your family.

Heather x

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Thank you for your kind words. I'm not medically trained at all and even after 3.5 years still feel like I have so much to learn about all of this. But that's why we're here isn't it, to share our own personal experiences in the hope we can help each other and not feel so alone. Best wishes. Wendy x

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This is true but here's a thing, I have found that often the drs defer to the patient? I'm often asked 'what do I think it is' by even consultants and I'm pretty sure a lot of good folks here have been told that they are just as knowledgeable or more so than the Dr s?

They may have a 'special interest' but rarely suffer from the same 'interest' ?

Hope your days a great one.

Hx

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It sounds like we have had totally different experiences with our medical stuff. I have spent the last 3.5 years banging my head against a brick wall as my doctors weren't listening to me and I knew my diagnosis wasn't correct. I have had to keep a daily health diary and take photos & get them printed off, as evidence for my case. I have even been to my MPs office and had meetings with health board officers to complain and still not got anywhere. The amount of reading and info from here, I think I did know what I was talking about, OK not 100% with it all, but more than my doctors knew but they were not prepared to accept that I knew my body & lupus better than they did. My local drs have no idea with lupus and this resulted in me making a trip to London and paying privately to get the correct diagnosis. It does seem that the key is a good lupus doctor and that they listen to you. It's a shame we don't all get the same care and treatment. I totally feel that this is a postcode lottery for lupus patients. Treasure your doctors who are prepared to listen to you. Have a great day. Wendy x

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I have good GPs now, but it's taken me 10 years to get this diagnosed from the RTA that acted as the catalyst. It is a lost code lottery. GPS are not informed enough about this and those that are, are reluctant to make that 'leap of faith'? I am absolutely amazed at the lengths you felt you needed to get your voice heard? It's also a very sad reflection of the amount of work that is needed to 'raise the profile' of Lupus UK amongst the professionals as well as the public's consciousness ? My now GPS know what I'm like? I spent 21 years as a carer, first to my late husband,then my late mother and then for various agencies thst gave me a certain amount of medical experience, just like right now Wendy, I could take a you and put you on a platform to speak about lupus? You like i have become a 'lay-expert'?

We both know the 'key' to lupus survival is early diagnosis? We are all literally 'fighting for our right to a life' ?

Wendy, I ended up speaking today to a call Handel's from my local water company who turned out to not only be 26, diagnosed from 13 with lupus and call centre was from SOUTH AFRICA? She had tried this and that and nothing suited her. So is on a lower dose of Prednisone and pain killers? Not much in medical advancement to offer her either. Um... Keep yourself and family well.c

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i am quite bad when going out in the sun as i have the butterfly rash on my face. thank you very much for replying helped alot x

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thank you x

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I'm on week 5. So far I've only felt a bit rough the next day. Just tired and sick. So they increased my folic acid to 3 days per week which seems to have helped. I hate taking pills and everything upsets my tummy but so far with this I'm ok. Really hoping that my hair doesn't fall out !

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Well my hairs been falling out for years before my recent diagnosis, so I understand this very much! Male gps esp.dont get it- women's hair is a massive part of out ' feminine identity' and can be very devistaiting to wake up finding that you've lost half of it with large, thinner bolding patches as it lies on your pillows?

I also found out (to my frustration) that I have an extra large head thats 'slightly mis-shapen' so makes a it difficult for conventional wigs to fit let alone stay on?

My late mother had a hair dresser who had RA. She had been on methexotraite for years. Her hair was full and glossy. Her slight side effects was having an urgency to go to toilet having taken it and feeling a bit wiped out for 24 hours? So she would take this Saterday afternoon and stay close to home on Sunday. Her daughter would sometimes pick her up to go to a garden centre but only if they had decent accessable toilets.

I wear scarfs and hats now?

Best wishes for keeping your glossy locks,

Hx

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