Newly diagnosed, told to take MTX, help!

[ShaneM]

Hello everyone! My name is Shane and I am new to this forum. 

I am actually very happy to have found this website, reading through many posts (being the huge researcher that I am), it seems a comforting place when psoriasis can be quite a physiological condition. 

I first had Guttate back in 2012, and it did what it does - appears, stops you from going out much, gets you down, then disappears. However, in about October last year, I started having a couple of patches of dry red skin, then more and more. I was origionally diagnosed with Pityriasis Rosea, another temporary condition. However, after it lasting longer than a few weeks, I paid to see a dermatologist. He diagnosed me with plaque psoriasis. He then told me to google "BAD psoriasis methotrexate" and click on the first link. I am going back to him on May 4th, for blood tests and to start treatment. However, after reading on different websites including this one, it has made me very wary about MTX and I have more questions than answers I can find, so, I would really appreciate some help and advice. 

I am going on two holidays, one with the girlfriend May 17th and one with a group of friends June 24th, these are my main concerns to get it to at least stop looking so angry. I am currently using coal tar, salt baths and moisturiser as this helped with the Guttate. 

•The doctor told me I can drink small amounts of alcohol only. Is this because of it affecting the liver, or low tolerance levels or both?

•How long do they start to take affect?

•Due to being 27, kids are a future thought, what affect have people had stopping after a decent period of time on MTX?  

•I seem to have found more negative stories than good. Can anyone actually recommend MTX or should I push for something else?

As I said earlier, I would really appreciate the help, I want to have a clear plan in my head when I go back to see the doctor in 3 weeks time. Thank you!

[Caroline]

Shane,

While I am accidentally online, a first welcome to Psoriasisclub.
We will try to answer your questions and provide you with suggestions and help. I see Jim is already answering you.

Have to continue work myself however, speak to you later.

Caroline

[jiml]

Hi Shane and   to the forum, I'm glad you have done some research and have found the forum helpful, as you have no doubt noticed, this is a friendly place to come and discuss the options that are available to us as sufferers..

I'm not a great lover of methotrexate, it's a drug I used and it is very good for clearing your skin and keeping you clear...I found the side effects got to much for me, and decided to come off it...

I was lucky enough to be offered amongst other things Fumaderm which I was advised to try as it was less toxic than many of the options

You will hear many stories about methotrexate from lovers of it to haters, I think its difficult to decide when there are conflicting reports.

Myself if I were young and offered methotrexate I would be wary having read some accounts, and would ask on the grounds that you are considering parenthood in the future, to try something less toxic, like Fumaderm .

Although that in itself has side effects, but they will be short lived, it's not a quick fix it's a slow burner and may take a while to kick in, whereas methotrexate for me was quite fast working

These are just my opinions and really it's up to you the way forward.....I'm glad you have found us and hope you will get lots of advice and different opinions to consider

Meanwhile check out the health boards they are packed full of facts and members experiences
The site is fully independent and no one will ever try to sell you anything and spam is banned instantly, so post away, ask questions and join the community

We also have an active off topic section for our enjoyment come and join in there as well if you wish
Jim

[ShaneM]

Thank you Caroline and thank you Jim. I have certainly noticed this is a friendly place, and after waking up thinking about it last night, it is a very calming place to know other people that have unfortunately adopted psoriasis and can talk through their experiences. I am generally a very positive and strong person, but sometimes you just need to see people are doing well with it to keep you going, especially with it being a new thing. I am now getting used to the idea that I have psoriais is now. 

So Jim, with your experience with MTX, did the psoriasis come back when you stopped? I have also seen it comes back with a vengeance? Do you also know how long you should take these tablets for, or are the indefinitely? I'm sorry for all the questions, my doctor was very vague! I am also working my way through the site for answers.

[D Foster]

Hi Shane. Welcome to the forum, you will find this a very friendly place.

There are some things that have to be taken into context and that is, what works for one person does not necessarily work for another person and it's the same with side effects .
I was on MTX for just over nine years , six by 25mg tablets and just over three years on 20 mg self injections so I feel that I have a very good idea about this drug. I never achieved complete clearance however I came from virtually complete cover in fact it was so bad that I had been in hospital three times for up to 6-7 weeks at a time.
My doses were ,I think, on the higher side and when I first took them I had stomach problems and tiredness which gradually settled down and I had little in the way of side effects for about five years providing that I took care and watched what I eat such as foods that could contain bugs like pate for instance. MTX can effect your kidneys and liver so regular blood tests are needed and I did not drink alcohol while I was on it as this risk was in my court to eliminate so why add to the risks.
My GP takes MTX and he is quite happy to take it , I did have a build up of side effects so I went on to injections which helped but over a period of time the side effects built up again so I had to stop taking it , the P came back in a short time but now I am on Stelara. All treatments have side effects even creams so it's really how you feel about it but MTX has been used for a long time and well known.
Any more questions you can think about just asl away.

Dave.

[jiml]

Thank you Caroline and thank you Jim. I have certainly noticed this is a friendly place, and after waking up thinking about it last night, it is a very calming place to know other people that have unfortunately adopted psoriasis and can talk through their experiences. I am generally a very positive and strong person, but sometimes you just need to see people are doing well with it to keep you going, especially with it being a new thing. I am now getting used to the idea that I have psoriais is now. 

So Jim, with your experience with MTX, did the psoriasis come back when you stopped? I have also seen it comes back with a vengeance? Do you also know how long you should take these tablets for, or are the indefinitely? I'm sorry for all the questions, my doctor was very vague! I am also working my way through the site for answers.

No Shane I was lucky when I came off methotrexate it was about 3 months before I started fumaderm and my psoriasis had not got out of control, it had come back but not aggressively ....it did take the fumaderm a good few weeks before it controlled the psoriasis ..... So if you go that route don't expect fast miracles.

Whatever you do get it will be long term there is no cure. You may get some periods of remission. But I'm afraid it will be a life sentence until they find a cure ..... Which is possible in your lifetime as the research is racing ahead very fast

[Caroline]

Shane, you can read my opinion on methotrexate over here MTX.
I want to have children and thought it better to stop it, but even if I don't (get children I mean), I still think it would be better for me to not use it.

[Fred]

Hello Shane   to Psoriasis Club.

I am actually very happy to have found this website, reading through many posts (being the huge researcher that I am), it seems a comforting place when psoriasis can be quite a physiological condition. 

Thank you for the kind words about Psoriasis Club it's nice to get feedback form our new members.

Now, Methotrexate. As you have seen you are going to get mixed reactions to your questions, and you have to remember they are peoples personal opinions. And like Dave said "what works for one may not work for others" Me I hate the stuff and it should no longer be used for psoriasis, I recently had to give it another go as a last resort. They said injections are not as bad as pills. As usual it was utter rubbish and it didn't take me long to remember why I called it Poison and threw the rest away.  

He then told me to google "BAD psoriasis methotrexate" and click on the first link. I am going back to him on May 4th, for blood tests and to start treatment. However, after reading on different websites including this one, it has made me very wary about MTX and I have more questions than answers I can find, so, I would really appreciate some help and advice.

I do have respect for BAD but all dermatologists will tell you to go there it is after all "The British Association of Dermatologists" and we all know that dermatologists have to follow a protocol when it comes to treating patients with psoriasis and that protocol includes an oral treatment such as Methotrexate.  

The doctor told me I can drink small amounts of alcohol only. Is this because of it affecting the liver, or low tolerance levels or both?

Yes you can, but very small amounts and some dermatologist say no alcohol. If you like a drink or are thinking of having a few whilst on holiday then Don't use methotrexate.

Due to being 27, kids are a future thought, what affect have people had stopping after a decent period of time on MTX?

You can get it out of your system, but do remember that methotrexate is used to induce abortions.
 

I seem to have found more negative stories than good. Can anyone actually recommend MTX or should I push for something else?

I would say the majority are negative, some are ok with it but the one thing we all agree on is there is no one suits all when it comes to treating psoriasis.

I'm sorry for all the questions, my doctor was very vague! I am also working my way through the site for answers.

Don't worry about asking questions that's why we are all here. And you won't get vague answers from people using the treatments and living with psoriasis. If you feel your doctor is being vague then I would ask for another one, a good dermatologist is worth their weight in gold and they will work with you and listen to you questions. (They're out there, but sometimes you have to dig them out. Maybe ask others in the waiting room who they are under, you may get some honest opinions.)

As for finding you way around, as a member you can use the Search Facility.  Using The Search Facility

Failing that just shout out somewhere and you will soon get found.

Regards.

Fred.

[pingu]

Hi Shane and welcome, it is a friendly place with great advice.

I myself am on MTX and it has worked for me although it definitely does not work for everyone. That said I am not here to advocate it or any other treatment as it is a personal and I believe lifestyle choice that you need to discuss and be happy with your consultant. They should take your lifestyle into account in my opinion.

That said my understanding is that if you plan to have children you should stop MTX 6 months before so contraception is important.

My first consultant also told me zero alcohol! Which was a little difficult but my new consultant has not said anything. I am still practically tea total having literally had a few beers in about 8 months of MTX. That said I would advise to follow what your consultant says and certainly "no weekend benders".

How long does it take to start working? That was one on my questions and it is impossible to answer. It just might not work at all or it could be quite fast or slow, everyone is different.

From what you have said though I think you need to be certain that MTX fits with your lifestyle as there are other alternatives.

Good luck with it though and hope you get sorted, when I was your age psoriasis was really getting me down as it can really hamper you psychologically. It shouldn't but thats after having been a sufferer for nearly 40 years.

[Turnedlight]

Hi there!

I have one thing to add, my derm never said to avoid alcohol, and when I asked him specifically about it, he said it was fine to drink. He didn't even caution me on the amount.
However I'm a lightweight and only have one glass of wine and only occasionally. I guess it's because of the strain you are already putting on your liver with the methotrexate, you don't want to give it more to deal with. But I think the best person to listen to on that is the one prescribing it to you.
I was ok on methotrexate, it worked very well for over a year. In the end it just stopped working for me.