Methotrexate side effects

[Fred]

Just as an add on Elly I made this thread a few years ago to try and give advise without being to prejudice. Methotrexate

[Smegs]

Heya!

Nice to meet you. I've been on MtX since 2012 for psoriatic arthritis and started at 10mg per week (I'm now on 12.5mg) and I had all the side effects that you have for about a month when I first started and when my dose was increased. However, the side effects subside for most people, others need to switch to the injected form which is easier on their system.

I would suggest giving it a month more and if the side effects don't subside speak to your GP and derm about an alternative to the pills. The only side effects that I have now are pretty awful migraines (about one a month) and changes to lady things (apologies if that's too much tmi) but with the alternative being pain and lack of the use of my hands it's a small price to pay.

Krissie

Heya krissie ?
I have read a lot of people change to the injection so they don't have as many side effects .
i have been getting headaches but as I suffer from them anyway I can cope with that ?
I have had a hysterectomy so fingers crossed will skip those symptoms ?

---

Edit by Fred: Moved quotes to make post look right.

[Grizzly Bear]

Smegs

[Smegs]

Hi Fred and thank you for your reply ??
It's kinda good to know it's normal so that's something ?
I am curious to know why you hate methotrexate so much ? I am a long time lurker and have gone through so many threads and have seen this comment from you many times and have always wondered why ?
I was on acitretin a year or so back but couldn't handle that any longer so came off and have suffered with psoriasis ever since ?
I have had a few goes at light therapy and it works every time but I suffer with bad prickly heat after about session 5 so eventually have to stop ! 

Right now my scalp is the worst .. I can kinda cope with the bits on my body but my scalp is about 70% covered and is driving me crazy ?

Well I'm glad you're no longer lurking.  

For me methotrexate is a poison. It's used to treat cancer and abortions, it's an old treatment and not very well tolerated by a lot of people. It can also cause liver problems and in my opinion there are plenty of other treatments for psoriasis without having to go through all the side effects that methotrexate cause.

When I first went on it after getting diagnosed with psoriatic arthritis 30 year sago. I was not monitored properly and every time I complained of a bad stomach I was just given more pills to calm my stomach, it never worked and I ended up feeling like a zombie and would retch like hell on pill day. I had enough and decided the pain of psoriatic arthritis was better than the feeling from methotrexate.

I did reluctantly try the injection form last year but got the same feelings so again I stopped and have vowed never to take it again. I should point out I don't like taking any pills, but methotrexate made my stomach feel so awful. I wouldn't tough it again even if they told me I was dying, I hate the stuff and there are plenty of other things today.

But you shouldn't let my opinion put you off, It's a personal thing and I wouldn't want to take something that kills cancer cells and a foetus.

Some do well on it and can handle it, you have to remember we are all different.

If you have failed on Acitretin, Light, and are now trying methotrexate it may be worth asking about a bio treatment. (Now them I do like as they gave me my life back)

Hi fred 
Yes makes perfect sense ?
Bio treatment would be great however I don't think my Derm would go for that at all ! He's not very good and because I'm not covered head to toe he sees it as though I have a very mild dose so would only prescribe me methotrexate or ciclosporin! From what I have read ciclosporin is much more harsh than the methotrexate so decided on that one .. Stelara would be great but I'm pretty confident in saying he would not go for it ?
Regards
elly

[Fred]

Hi fred 
Yes makes perfect sense ?
Bio treatment would be great however I don't think my Derm would go for that at all ! He's not very good and because I'm not covered head to toe he sees it as though I have a very mild dose so would only prescribe me methotrexate or ciclosporin! From what I have read ciclosporin is much more harsh than the methotrexate so decided on that one .. Stelara would be great but I'm pretty confident in saying he would not go for it ?
Regards
elly

No they wont give Bio's if you don't have much, but they do tend to if you can't handle the oral treatments. You could ask about Fumaderm, but it's not available in all parts of the UK.

Get another dermatologist if your not happy, it's your body they are playing with.

[jiml]

Hi fred 
Yes makes perfect sense ?
Bio treatment would be great however I don't think my Derm would go for that at all ! He's not very good and because I'm not covered head to toe he sees it as though I have a very mild dose so would only prescribe me methotrexate or ciclosporin! From what I have read ciclosporin is much more harsh than the methotrexate so decided on that one .. Stelara would be great but I'm pretty confident in saying he would not go for it ?
Regards
elly

No they wont give Bio's if you don't have much, but they do tend to if you can't handle the oral treatments. You could ask about Fumaderm, but it's not available in all parts of the UK.

Get another dermatologist if your not happy, it's your body they are playing with.

Yes I agree with Fred they won't give bios unless you are fairly covered, but if it's affecting your quality of life in that you are suffering anxiety and stress because of the disease they should consider you for one of them perhaps Humira

But it's worth asking about my treatment Fumaderm as its less toxic than mtx or cyclosporine and if you can cope with the likely side effects it should give you long term clearance as it has for me ( over 4 years ) and has for several members here

[Caroline]

Hi fred 
Yes makes perfect sense ?
Bio treatment would be great however I don't think my Derm would go for that at all ! He's not very good and because I'm not covered head to toe he sees it as though I have a very mild dose so would only prescribe me methotrexate or ciclosporin! From what I have read ciclosporin is much more harsh than the methotrexate so decided on that one .. Stelara would be great but I'm pretty confident in saying he would not go for it ?
Regards
elly

No they wont give Bio's if you don't have much, but they do tend to if you can't handle the oral treatments. You could ask about Fumaderm, but it's not available in all parts of the UK.

Get another dermatologist if your not happy, it's your body they are playing with.

Yes I agree with Fred  they won't give bios unless you are fairly covered, but if it's affecting your quality of life in that you are suffering anxiety and stress because of the disease they should consider you for one of them perhaps Humira

But it's worth asking about my treatment Fumaderm as its less toxic than mtx or cyclosporine and if you can cope with the likely side effects it should give you long term clearance as it has for me ( over 4 years ) and has for several members here

Jim is earlier than me again. Hi Elly welcome to psoriasisclub.
I am one of the opponents of MTX, with me well about everything in my body started to feel like screaming after a while, so I quit it, it felt so harmful for me. But still there are like Krissie (hi Krissie, long time no see ) and Dave who did very good on it.
You should ask your Derm if he would be so kind to start using it for a while, I bet he will say no.....
Fumaderm also has its side-effects, but the substance (DMF) is far less toxic. Just like Jim says.


Caroline

[Smegs]

Hi fred 
Yes makes perfect sense ?
Bio treatment would be great however I don't think my Derm would go for that at all ! He's not very good and because I'm not covered head to toe he sees it as though I have a very mild dose so would only prescribe me methotrexate or ciclosporin! From what I have read ciclosporin is much more harsh than the methotrexate so decided on that one .. Stelara would be great but I'm pretty confident in saying he would not go for it ?
Regards
elly

No they wont give Bio's if you don't have much, but they do tend to if you can't handle the oral treatments. You could ask about Fumaderm, but it's not available in all parts of the UK.

Get another dermatologist if your not happy, it's your body they are playing with.

It's NHS so can I request another derm ? Takes so long to get an appointment as it is ?
I have read a fair bit into fumaderm .. It's sounds quite harsh on the tummy . 
Mine is mainly legs and arms that are covered in patches along with a few random bits on my back body wise . Main thing for me at the moment is to try and get my scalp under control
Regards 
Elly

[jiml]

Hi fred 
Yes makes perfect sense ?
Bio treatment would be great however I don't think my Derm would go for that at all ! He's not very good and because I'm not covered head to toe he sees it as though I have a very mild dose so would only prescribe me methotrexate or ciclosporin! From what I have read ciclosporin is much more harsh than the methotrexate so decided on that one .. Stelara would be great but I'm pretty confident in saying he would not go for it ?
Regards
elly

No they wont give Bio's if you don't have much, but they do tend to if you can't handle the oral treatments. You could ask about Fumaderm, but it's not available in all parts of the UK.

Get another dermatologist if your not happy, it's your body they are playing with.

It's NHS so can I request another derm ? Takes so long to get an appointment as it is ?
I have read a fair bit into fumaderm .. It's sounds quite harsh on the tummy . 
Mine is mainly legs and arms that are covered in patches along with a few random bits on my back body wise . Main thing for me at the moment is to try and get my scalp under control
Regards 
Elly

Hi Elly no I don't think it's easy to change dermatologists unless you move to a different area. Unfortunately we can't chop and change as they do in America. I would stick with the dermatologist you have, and try to build a relationship with him / her.
About Fumaderm yes it can be harsh at the start, but it's great if you get through the side effects so don't dismiss it. I would hate to come off it now as it's the first thing that I have ever had long term success with
I suffered with the side effects but knew if I could hack them it would keep me clear ..... And to be honest the cramps didn't last long each day around half an hour. Some were severe enough to bend me double but it soon passed and I have not had a stomach cramp for years. In fact my life is so normal I forget I have psoriasis and happily run around in swim shorts at the beach and at the pool. Something I spent most of my life avoiding

[Fred]

I disagree with Jim. You can change if you are not happy with your current consultant.

Here are a couple of quotes from the NHS I have the links if you want them PM me.

You can ask your GP or another healthcare professional for a second or further opinion (an opinion about your health condition from a different doctor).

Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one.

Before asking for a second opinion, it’s worth asking your GP or consultant to go over your diagnosis and explain anything you don’t understand.

If you’re unhappy with your diagnosis or would like to consider a different course of treatment, discuss this with them. Your GP or consultant will be happy to explain things and, in many cases, there may be no need for a second opinion.

If you would like a second opinion after seeing a consultant (a senior medical doctor who specialises in a particular field of medicine), you need to go back to your GP and ask them to refer you again. If your GP agrees to refer you to a new consultant, the consultant will be told that this is your second opinion. They will also be sent any relevant test results or X-rays previously carried out.

This does not mean that the new consultant will automatically take over your care. If you want to be treated by the new consultant, this will need to be arranged with the doctors and hospital.

Choosing a hospital or consultant

If you are referred to a specialist, you have the right to choose which hospital or clinic to go to for your outpatient appointments. You are also able to choose which consultant-led team will be in charge of your treatment, as long as that team provides the treatment you require.

Therefore, if you wish to be treated by a particular consultant for a procedure, you can choose to have your outpatient appointments at the hospital where the consultant works, and to be treated by that consultant's team – but this doesn't necessarily mean you'll be seen by the consultant themselves.

This choice is a legal right, if you are not offered a choice at the point of referral, ask your doctor why and say that you wish to go through your options. If you are still not offered, or refused, a choice, contact your local CCG. If you still don't get a choice, you can complain to the Parliamentary and Health Service Ombudsman.

Like I said it's your body and if you are not happy then you should say so.