Can't tolerate methotrexate: Hi all My question is on... - NRAS

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Can't tolerate methotrexate

Camelian profile image
14 Replies

Hi all

My question is on behalf of my sister who has had severe psoriasis for approx 10 years.

Unable to cope with the condition anymore she was eventually sent to a specialist who informed her the condition was affecting her internal organs and she was put on methotrexate- I think her condition is call psoriatic psoriasis??

With regards to psoriasis the medication worked but she is unable to tolerate it and experienced severe nausea and vomiting. Due to side effects she was put on injections which was slightly better but she's still suffering.

My question :

Is there an alternative to methotrexate-? I would appreciate any advice about the condition and the medicine used to manage it.

Many thanks

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Camelian profile image
Camelian
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14 Replies
allanah profile image
allanah

Hi. Mtx can make you feel awful. I tried it with food and before bed but still didn't suit. So I then talked to my rheumy who put me on mtx Injections.

She needs to be honest with them as it's a long term condition and it's best to be on drugs you can tolerate long-term. If even mtx injections are no good other disease modifying drugs are available to discuss eith docs. Good luck , she sounds lucky to have you as her sister x

Camelian profile image
Camelian in reply to allanah

Thank you for kind words in fact it's me who feels lucky to have her as a sister and I hate having to see her suffering.

In addition to psoriatic psoriasis she has high BP, manged with meds, and diabetes so she may be limited to what meds she can take re contraindications with her other meds, She's been on methotrexate for 5 years and in that time she has told her consultant about the side effects but there was no mention of changing the meds- in fact they said they were just glad it was working for her condition as they didn't think it would,??

Blackwitch profile image
Blackwitch

Hi Camelian

Is your sister under the care of a Rheumatology Team? Perhaps she could ring the Rheumatology nurses to explain what’s happening. Usually, with Methotrexate, you take it on one day a week & folic acid on the other 6. I know some people take anti-emetics too for sickness. If she still feels ill, there are many other medications to try. It can sometime mean trying another or even two together so she may have to be patient before she finds something that suits her. Unfortunately, you have to be patient. ☹️

If I’ve had problems in the past, I’ve phoned the Rheumatology Helpline. If it means that they can prescribe something different, they might be able to either send a prescription via email or fax to her GP. She may have to check with your surgery to see if they’ve had it first.

It’s no fun when you have a bad reaction to your medication, so I wish her well. Nic xx

Camelian profile image
Camelian in reply to Blackwitch

Thanks for your reply.

In answer to your question I'm not sure if she's under a rheumatologist team but I will find out.

Like I said to allanuh she's been on methotrexate-for 5 years and in spite of her informing the medical team of her side effects there was no mention of changing- not sure why ?

Chalmers profile image
Chalmers in reply to Blackwitch

I have a lovely rheumatology nurse, and any problems, worries whatsoever, just phone their number and she always gets back to me and always seems to be able to reassure me. In fact I get more sense and info and action if necessary from my nurse that I do from the specialist. I didn't get along with methotrexate after a while, then leflunomide was next.

helixhelix profile image
helixhelix

I’ve not heard of psoriatic psoriasis. Which doesn’t mean it doesn’t exist of course, but does make me wonder if she has psoriatic arthritis? Info about it here....

nhs.uk/conditions/psoriatic...

It’s very similar to rheumatoid arthritis and treated in a similar way too. So there are other drugs possible, as the linked article says. All drugs have side effects, and since she has high BP then may not be suitable for Leflunomide as that can raise blood pressure, but Sulphasalazine may be an option. She would have to try some thing else before being considered for the newer drugs anyway. And depending on how bad her condition is may not be eligible for them anyway.

So she needs to push her doctors to consider changing drugs. Maybe suggest she writes down the effect it is having on her so she has a list in front of her for next appointment.

I’ve been on Methotrexate for 9+ years now and I find that it’s tolerable for me, especially if I drink lots of water and take my folic acid. She could also be offered anti-nausea drugs. The other thing I believe has helped me is that I do eat very well, lots fruit, veg and fish and not too much fatty sugary food or processed food. Looking after yourself does make a difference.

cathie profile image
cathie

When I was taken off methotrexate it leflunomide was given as a replacement. I haven’t had reactions at all

polltax profile image
polltax

Hi I went through the same with mtx keep going back to your consultant eventually they put me on a biological - Benepali - Entercept and now get virtually no side effects

Wizard12 profile image
Wizard12

This is probably quite obvious but was the same for me. Is she on folic acid 6 days a week? I wasnt and only after suffering for a long time was I told that I could do this and it helped a lot.

Barrister profile image
Barrister

My son has severe psoriasis (I have Psoriatic Arthritis but no psoriasis) and he went through a whole range of medication including Methotrexate, none of which did anything to help the psoriasis. Two years ago he was started on Stelara injections, one every three months and his skin started to clear after the second injection. It is now completely clear and he was covered from head to foot.

Clemmie

AgedCrone profile image
AgedCrone

Do you mean your sister has psoriatic Arthritis...does she have a positive rheumatoid factor?

Is she seeing a rheumatologist or a dermatologist or both? She may even benefit from seeing a gastroenterologist .

Why not get her to go back to her GP and get him or her to contact the specialists she is under........& get them to speak to each other......it seems as if she needs a lead physician to coordinate her treatment...five years seems too long to suffer on Mtx,with nobody suggesting anything different.

I'm taking MTX and Leflunomide, fortunately I've had very few problems with MTX and none with Leflunomide.

janetellen profile image
janetellen

I had terrible nausea symptons but now use a seaband normally used for sea sickness and bought from the chemist. I was very sceptical at first but its brilliant have been using it for 3 months and so far so good. Might be worth a try.

Camelian profile image
Camelian

Thank you Jane and to all of the people that replied it's led to a lot of reading about the condition trying to get an understanding.

So in answer to my original question there is alternatives to methotrexate- which will be really good news for my sister and will give her hope

Thanks again

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