Frustrated to the max .. methotrexate ?

[jiml]

Hi I disagree that what you did was irresponsible. It is standard procedure to increase the dose of methotrexate up to 20 mg a week
I think it is your hospital being irresponsible leaving you so long on such a low dose ( bear in mind the dosing for psoriasis is far lower than when it's used for chemotherapy )
I can understand the frustration of having the tablets to do the job and no one in authority at the hospital to authorise it

Dosages may be adjusted gradually to achieve optimal response.
-Limited experience shows a significant increase in the incidence and severity of serious toxic reactions, especially bone marrow suppression, at doses greater than 20 mg per week in adults.
-Therapeutic response usually begins within 3 to 6 weeks and the patient may continue to improve for another 12 weeks or more.

I agree it's time to get tough and demand better care. The fact that the hospital is without a dermatologist should not impact on your quality of life .
Had I been in your shoes and knowing that tests had been done and my body was tolerating the drug . I would probably have done the same thing

I'm not saying it's right, but desperation drives you to take chances .

So certainly don't give up Fred has pointed you at the DLQI page so I hope you take note and give them hell... because that's what they have been giving you .

[Caroline]

Well Fred, I must admit that this looks to be an instance where your national pastime is entirely justified. Personally I cannot understand why things aren't done the other way around. i.e. Use the fastest treatments like Cosentyx to get serious illness under control rapidly, then maintain the patient with medications like DMF.

Indeed that is the new approach over here in NL, combining Bio's and DMF. Still used by few dermatologists, but mentioned by the lead derm on World Psoriasis Day.

[Bill]

Have to disagree there, Jim. If you are under someone's care, you owe them the courtesy of following instructions. If the instructions are rubbish you have every reason to complain, but by going against instructions you take responsibility for the consequences.

It sounds very sensible there, Caroline. Cost effective too I would think.

[Caroline]

Have to disagree there, Jim. If you are under someone's care, you owe them the courtesy of following instructions. If the instructions are rubbish you have every reason to complain, but by going against instructions you take responsibility for the consequences.

It sounds very sensible there, Caroline. Cost effective too I would think.

Certainly it is Bill.
Because I have some connections with people within this world, I know however that lots of things are playing on the background and that there is more than one agenda on the different locations where derms are working on the psoriasis problem. I can assure you that that is very annoying, and is slowing down the positive steps that specifically the patients organisations are trying to make.

[Fred]

Have to disagree there, Jim. If you are under someone's care, you owe them the courtesy of following instructions. If the instructions are rubbish you have every reason to complain, but by going against instructions you take responsibility for the consequences.

Yes I'm with you on that Bill.

You need to work with your dermatologist, not against them. If you go to them for help then you should do as they say, or at the very least ask them about a change before taking it upon yourself.

Yes it's a low dose Jim. But we don't have all the information about Smegs condition including bloods, liver function etc. I fully understand the frustration but like Bill said "A 50% increase is a stupid decision" We're not talking of using a little bit more cream on the skin, we're talking of adding an extra 50% poison without being monitored.

As you can see Smegs we all have different opinions. But at the end of the day it's your body and you have to make the decision that you think is best.

[Caroline]

Smegs,
Don't get too frustrated by the comments over here. They mean it very well and it is their way of telling you to be very careful and in the mean time they try to point you a way to go.

Anyway, never give up! There is always light somewhere on the horizon, and we will try to help you to find and see it.
I think that Fred's suggestions was one of the best. Fill in the form.
Maybe it is even possible to get the support of your GP, over here in NL that is possible as there is mostly a good relation between GP and patient.

[jiml]

Have to disagree there, Jim. If you are under someone's care, you owe them the courtesy of following instructions. If the instructions are rubbish you have every reason to complain, but by going against instructions you take responsibility for the consequences.

It sounds very sensible there, Caroline. Cost effective too I would think.

I won't get into an arguement, will will have to agree to diasagree ....

[mataribot]

I am going to disagree with a lot of people in this thread. Low dose MTX (< 10) is typicality given to people with liver/kidney or diabetic concerns. If non of those are problems then there is no reason to keep a low dose. Standard dosing for MTX is 15 for psoriasis. Not going to see much if any improvement below that. My only suggestion is to find a new doctor. The cost for me in the states is 15 USD per month without insurance for 25 .The stuff is cheap and I am willing to wager it's cheaper many topological options.

[Turnedlight]

This is in uk, it's not about costs it's about procedure. For some reason, different healthcare trusts seem to have different procedures.

I'm sorry to see Smegs has been landed in a hot debate - agreed, it sounds like not a good idea to adjust your dosage yourself, since it could potentially be dangerous and when they get your blood test results they will look at it with regard to the dosage they believe you to be on.

However, I do think advice on here shouldn't really be about whether you can or can't take certain amounts but more what Smegs can try and do about the dermatology (lack of!) situation.

So, are you at a very small hospital or something? And could you potentially go to a larger one? Also, if you do some hunting online you can often find a derms email address and speak to them that way in between appointments, or get their secretary.

Given you say you have lost your derm - are there now none at the hospital? Because if you've been referred to one and that has been removed before your treatment is at least stable I would complain to them or go back and tell your GP what is happening.

Don't listen to people calling us 'whinging' - especially those who have different healthcare systems - we are in a position at the moment where we positively have to speak up or we are assumed to be ok. That's not whinging, that's letting them know there's a problem. I had a terrible time during my uvb treatment where I couldn't get seen and ended up on steroids so I know what it's like to feel lost in the system which assumes that everyone responds the same way to each treatment and doesn't need extra attention.

Good luck, I'm sure things will get better soon.

[jiml]

You are right TL and I apologise Smegs for hijacking your thread
Turnedlights is right and as has offered some good advice, relevant to our NHS good luck