Frustrated to the max .. methotrexate ?

[Smegs]

Hey everyone ?
So .. I have been taking methotrexate since around the 21st of July and have only gone up by 5mg's ? My Derm is completely useless ! I started on 5mg for around 4 weeks and the for the remainder I have been on 10mg's . Side effects are fine to be fair ?
My problem is it's not working .. not even a little ! In fact if anything it's getting worse . I spoke to my derm as I have an appointment on the 31st of this month and told her I'd took 15mg's last week instead of the 10 they had prescribed me and why .. she wasn't happy ! She said that if they increase they only increase at 2.5mg's a time and appointments to get that are 12 weeks apart !!!  Think where they have kept me on a low dose for so long my body has maybe just got used to it and now a few patches that had started to calm a little have gone back to how they were with extra bits added and my scalp is worse than ever ?
Really not sure what to do .. part of me thinks stuff it and come off .
They won't consider anything apart from acitretin ( already tried that and didn't like it at all )  or ciclosporin ( majority don't seem to clear on that and it's quite harsh at 1st so quite unsure on that one too ) help ?

[Caroline]

Smegs, sorry I have little time. It's already late here.

Go to your derm, dump the MTX, and don't go away without a prescription for fumaderm. That is worth trying. Good stuff.

[Smegs]

Thank you Caroline for your reply ? 
The derm has left the hospital so am seeing a nurse ( who is rubbish may I add ) so should be fun . I will ask him but I'm pretty sure in saying she won't go for that as they don't see my psoriasis as severe enough

[jiml]

Hi Smegs what a shame you have a dermatologist who is penny pinching and reluctant to give you a decent dose of methotrexate it took 10 of the 2.5mg tablets a week to get me clear, and I'm sure my dose was increased quite fast, I would have thought your dermatologist would have been pleased that you had taken the initiative to increase ....Im assuming you are regularly monitored your blood , kidney and liver functions.

Don't let them push you around at your appointment ...tell them  you would expect at 12 weeks to have seen an improvement and not the disease getting worse .....tell them it's driving you mad and you could accept a slow improvement but not to be going backwards. Tell them it's badly affecting your quality of life

Ask about biologicals as you have tried acetretin and methotrexate and fear for your general Heath with cyclosporine.....You could also mention the drug I'm on which is Fumaderm ....it should be available to your hospital to prescribe ......it's not an easy or fast drug .....but it's the first thing to clear me for any length of time four and a half years now ...the side effects may be harsh to begin but they get easier as your body gets used to them

I'm sure others will have ideas but keep asking and check the prescribed treatments board so you can go armed with what you want from the consultation Prescribed Treatments For Psoriasis

[Caroline]

Smegs,

I am sorry I was so short yesterday, but did not have time anymore left at that moment to answer extensively.
Basically it is a bit strange that the derm only wants to increase so slowly, but it may be because she is careful, it is quite a harsh drug.
If it does not work for you, try to come off it as soon as possible, otherwise it can only harm you.
The advice of Jim is a very good one, I can stand behind that. It is it worth to try Fumaderm as the other step would be to go bio's, which are way more expensive and the protocol of the derm probably prohibits it.

Cheers,
Caroline

[Fred]

First off you should never go behind your dermatologists back and change the dose as and when you feel like it, especially with methotrexate. Your dermatologist may be useless but I'm not surprised she wasn't happy. Sorry but you are playing with a dangerous drug there.

Ok lecture over.

#1 Get another dermatologist.
#2 Read this and see if it helps: NICE Quality Standards for Psoriasis
#3 Dump methotrexate it's poison.
#4 If you have tried the other orals, then yes ask about Fumaderm (it's not available in all NHS trusts) but you could be lucky.
#5 A nurse is not capable of treating you properly.

If as you say the psoriasis is not bad enough they probably wont consider a Bio. So if you did want to go that way, come off of everything and see if the psoriasis gets worse. If it does then maybe they will reconsider, if it doesn't get worse then use Cocont Oil and enjoy it while it lasts. (I went years without any treatment)

Good luck on your choice.  

[Bill]

Hi Smegs,

I can understand your specialist being unimpressed with you for increasing your dosage by 50% without consultation: That is incredibly stupid. Unless you are contemplating even sillier alternatives like self-medication, diet, natural therapies and assorted witchcraft, I would suggest that you work with your health carers and the system they are bound by. Jim's advice of being a squeaky wheel is always useful, but squeaky is much more about persistence than rudeness and disobedience. Keep these guys informed about the complete failure of your treatment and the distress you are suffering. If you have been providing plenty of feedback then take your complaint to a higher level. I would also suggest that you look at the prescribing guidelines for Methotrexate, and check whether the treatment you have been receiving falls within those parameters.

Now I realize that wingeing is second nature to you Poms, and I acknowledge the great things all that wingeing has brought the World, but as someone who self-medicates I cannot help but cringe when I see such ingratitude toward those who offer you their care and expertise.

Cheers,

Bill

[Smegs]

Thank you for all of your responses . 
I do agree the self medicating was rather stupid , I am just so frustrated right now . 
The derm I had has left the hospital so now I don't have one .. have just been placed with a nurse who to be fair really doesn't care at all . 
I kind of feel if they had gave me sooner / more regular appointments ( once a month maybe ) and increased by 2.5mg a time the I would be on more mg's by now anyway and then maybe the drug would be working steadily .. as I say right now it has got so much worse . 

Even the mention of me trying something else they will not entertain 

Coming off everything completely is fine but then when I get to the flare stage it takes literally forever to get back on the dermatologist's books .. really don't know what to do 
Right now I just feel like I can't deal with this anymore . My scalp is so sore and bleeds .. no matter what I use on it , it doesn't make the slightest difference . I use coconut oil every other night but all that does is leave with with sore boils and spots on the nape of my neck , back and head 
Skin is sore on my knees and bathing the little one is just hard . Feel like giving up right now 
Thank you all again 

[Fred]

Thank you for all of your responses . 
I do agree the self medicating was rather stupid , I am just so frustrated right now . 
The derm I had has left the hospital so now I don't have one .. have just been placed with a nurse who to be fair really doesn't care at all . 
I kind of feel if they had gave me sooner / more regular appointments ( once a month maybe ) and increased by 2.5mg a time the I would be on more mg's by now anyway and then maybe the drug would be working steadily .. as I say right now it has got so much worse . 

Even the mention of me trying something else they will not entertain 

Coming off everything completely is fine but then when I get to the flare stage it takes literally forever to get back on the dermatologist's books .. really don't know what to do 
Right now I just feel like I can't deal with this anymore . My scalp is so sore and bleeds .. no matter what I use on it , it doesn't make the slightest difference . I use coconut oil every other night but all that does is leave with with sore boils and spots on the nape of my neck , back and head 
Skin is sore on my knees and bathing the little one is just hard . Feel like giving up right now 
Thank you all again 

Don't give up Mate you have a right to treatment.

Go to this thread Dermatology Life Quality Index (DLQI) and print out a copy of the DLQI. Fill it in (give worse scores than you think they are) Then contact the dermatology department of your hospital and tell them you need an urgent appointment as your current situation is causing problems with your quality of life, tell them you have been guided to fill in the DLQI by Psoriasis Club and you demand that a dermatologist looks at it.

A nurse can not treat you, he/she does not have the power. It's a dermatologist job, and you have the right to be treated properly.

Unfortunately this is one of those cases where you are going to have to get angry with them. It's not always easy for some to do, but trust me it works if you start kicking up a fuss. They won't like the mention of social media, newspapers, etc getting involved. And to use one of Bills sayings. (It's time for some Wingeing)

Don't give in. Were behind you all the way.  

[Bill]

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.