I really dont know wot to do for the best, any advice plz?

DebbieT

Hi all,

I've been on Methotrexate tablets since 2007 to stop the damage my PsA had started to do. It seems to be working but I've only had 1 lot of xrays since so who knows.

The really good part of being put on the med was it started to clear my severe plaque psoriasis. That stuff is really stubborn tho & I've never been completely clear of it. The dosage has had to be raised to a standard 25mg a week but still with breakthrough plaques.

I've had 6 chest infections since Xmas & have been given 2 lots of antibiotics each time to clear it but the last 2 I've only been clear of it for a couple of days b4 it's infected again!!

I'm on day 10 of a 10 day course of 40mg steroids & felt almost normal from Monday til Wednesday night & then I started coughing again & bringing up infected mucus.

As I have fibromyalgia as well as OA, PsA, Psoriasis & mild asthma I have insomnia & cfs at the same time too, insomnia tends to win the battle tho!!
Anyway, back to my point.

I saw my dermatologist on Wednesday & she's unhappy I've been on steroids coz it's likely to cause a huge psoriasis flare. I explained I'm never clear at the dosage I take anyway so wots the difference as long as they'll make my chest better coz being ill with all of my other health problems is EXHAUSTING!!
Her answer ... Put me on a new standard dose of 30mg a week from now on!!! Surely this is going to make my immune system even weaker & therefore my chest be at even more risk??

I'm at my whits end, no idea which thing to prioritise & whether I should stop Methotrexate all together. I'm never gona get offered a biologic med coz of the cost & its classed as working for me even tho the immune system is becoming the biggest problem for me ... It doesn't seem to matter that I view it as a big problem tho, my Dermatologist & Rheumatologist think its all about their separate specialties & aren't treating me as a whole person.

That's how its making me feel anyway Does anyone else have similar problems with their conditions being the only thing considered & not yourself as a whole person?? Any advice, suggestions would be wonderful.
Thanks in advance.x

lizzieuk1

Poor u it is grim juggling ur condition and actually being able to live comfortably.

OK well if ur having repeated infection then the meth is not working for u its not just about condition control but side effects too. Tell ur rheumy the side effects are unacceptable and they need to do something else for u.
30mg is q a high dose and I would think perhaps a lower dose in combo with another dmard may be better or maybe meth by inj may be better as generally u can have a lower dose that way. Call them ask for an appointment and make them listen its unacceptable you need to function otherwise whats the point of controlling ur condition and having no life cause ur stuck in bed poorly, I think sometimes they forget we have lives too!!

DebbieT

Thank you for understanding!! It means a lot coz I feel I can lose perspective at times n turn into just a moaner :?

I've had Acitretin & Sulphasalazine in the past without any benefits from them but I don't know if they're DMards? I guess I've been absent from my own treatment & just doing wot they say coz in my mind they're supposed to know best!! This is my wake up call to be more proactive in my treatment tho

I've never been offered mtx as an injection, if a lower dose would work as well by just switching thats sumut I'd definitely be willing to try!!

I'm gona put a call in to my Rheumys secretary today as I don't think this can wait until my 6 month review in July.

Thank you for responding Lizzie.x

scattered

If the MTX is having an adverse effect on you, i.e. is causing too many infections then you can change to another drug. If you've been on at least two DMARDs for the PsA and one of them was MTX, and they both failed you can qualify for anti-TNF treatment. You have been on MTX and sulphasalazine, both of which are DMARDs. as long as both are seen as failing you should qualify for biologic treatments, although you will have to be completely infection free before you start them.

Do you stop the MTX every time you have an infection and get given antibiotics? You should be stopping it until you are clear from infection and have finished the course of antibiotics, otherwise your immune system won't have a chance to recover. How are your regular bloods? Are your white cells, neutrophils and lymphocytes all at normal levels to fight off infection?

Good luck.

frogmorton

HI Debbie

I am so glad you have found us and I for one do not think you are a moaner!!!

Scattered has a real point about stopping your MTX (to give your body a chance to recover and fight the infection), when you have an infection BUT please don't do that without medical advice.

You could ask the rheumy about it as well as alternative treaments when you see him/her. I tend to agree that you should meet the criteria for
biologics having tried two DMARDs one of which being MTX.

barbara12

Hello Debbie you are not a moaner but someone who is suffering....and quite badly with the sounds of it...
I am sorry I cant offer any advice, but it will do you good to talk to us , mush easier than family sometimes.
There are quite a few on here with PA ...so I hope they can offer you some advise...I just want to wish you well with your treatment..((((())))xx

DebbieT

I can't thank you all enough!!

I've just got home from seeing the Triage Nurse at my GPs. She specialises in respiratory problems so is now trying a 2 week course of Clarithromycin instead of Doxycycline which hasn't cleared it.

I was only ever told to stop methotrexate twice, the 1st time was wen I had active Glandular Fever a couple of years ago & last Monday when my GP put me on the 1st 5 day course of steroids. I'm going to have to ring & see if they want me to restart methotrexate next Wednesday as planned or not now :? It's making my head spin

My bloods are always raised across the board. Both my rheumatologist & dermatologist requested more specialized testing to make sure there wasn't anything else going on ... A few tests later & I was basically told that it seems thats just my 'normal' baseline. It does raise regularly coz of swelling from the arthritises & fm. My infection markers are nearly always raised as is my white cell count.

The consultants have both said they don't class it as failing due to the PsA being reasonably well controlled & that my plaques are ok compared to being on no meds at all. It costs too much is all they tell me but my GP admitted last week that in her opinion the benefits are no longer outweighing the side effects of infections etc ... I suppose having the Fibromyalgia etc too could b making it harder for them to know wots best?? Maybe it's just me tho coz it's all getting me down, my quality of life seems to be getting less & less

You have all been so helpful, truly, thank you.x