What Next?

scarlett

Hi there,

Can anyone tell me of their experiences please, I am 41 with PA and taking NSAID and Metoject 15mg - my WCC and neutrophils are low again and I am having to reduce the Mtx does to 10mg.

Wondered if anyone had experienced what happens next if this doesn't work, I was off it for 4 weeks earlier in the year and it was awful.

What options have others been given?

Your advice is much appreciated.

Scarlett x

frogmorton

Hi scarlett

No useful answer here but just offering my support till a more useful person comes along.

Wise to reduce the doise but can they not give you anything else??

Love

Toni xx

lindalegs

Hi Scarlett,

From what I understand if the Methoject (sp?) doesn't work for you they could give you Sulphasalazine as well to see if that helps and if you don't respond to these 'conventional' drugs you could be considered for Anti-TNF drugs.

It's just a case of finding out which medication is best for you.

Luv Legs

dorcas

Hi scarlett,

I have PA too and had the same experience with Mtx a few years ago and had to come off it due to low WCC and other side effects.

The rheummy then changed me to azathioprine in combination with an anti tnf.

After 4yrs that was changed again due to low wcc caused by aza, so I was restarted on Mtx injection with the anti tnf.

I've been able to tolerate the Mtx but then the anti tnf stopped working due to my immune system producing antibodies. :roll:

Now waiting to start my third anti tnf after my next op in June....but still on the Mtx!

I think that as far as these powerful drugs are concerned we just have to 'go with the flow'; if something stops working or we have a reaction etc. the rheummy's still have options they can consider to try to keep arther under control.

...so, if you have to come off the Mtx your rheummy will discuss what other meds there are, or combination of meds, that would be suitable for you.

hope it works out for you too.

Iris x

dreamdaisy

I will list everything I've tried then I'll tell you which one has worked.
(I too have PA but minus the P - only two severe outbreaks in my life, my scalp, then nine years later the palms of my hands and the soles of my feet.)

sulphasalazine, methotrexate pills, injected methotrexate, leflunomide pills, cyclosporin tablets, oral steroids, injected steroids, infliximab infusion, enbrel and humira injections, naproxen tablets(anti-inflammatories) and omeprazole (to stop the naproxen rotting my guts).

The most effective has been humira, it's lasted ten months so far but is beginning to weaken. The sulph keeps the psoriasis at bay, so that works, but does nothing for the arthritis. The injected meth (15ml dose weekly) is supposed to support the humira but I feel better without it.

For painkillers I have co-codamol 30/500 for everyday, tramadol 50mg for night and liquid morphine for the really bad times. Once you are on the meds roundabout you don't get off. It's trial and error all the way. Some meds work, some don't. Side effects are not guaranteed - I have none with meth whatsoever, others really suffer. I began PA in 1997 but wasn't diagnosed until October 2006, when the enbrel failed and I had psoriasis. I have had three operations on my knees (no replacements, my joints are undamaged) and I have been in constant pain since 97. You get used to it. Dreamdaisy

raybee

Hi Scarlet,

Sorry you're not feeling great.

I'm also 41 with PA. I was on Methotrexate but taken off in Jan because of my white blood count. I had a short break of nothing and then Sulfafsalazine. Thought it was going well but I noticed my white bloods are down again. Seeing my consultant on Friday. Glad cos I'm in a flare up. Seems to be wandering into my spine. Weirdly I have never had Psoriasis. I suppose I should never say never.
There are so many diff drugs out there. Maybe they will move you onto something that works really really well.

I send positive thoughts to you!!!!!!!
Take care

Rachelx

scarlett

Thankyou everyone, that is really helpful, it's just a bit scary to think back to how I used to be without the meds. Sulpha didn't work for me and if I am honest I don't know how much the MTX is working now, I know how to cope with the pain it's just a nightmare when I want to do things that I can't anymore!

Also I am so lucky compared to most on here I work and still lead a very full life even if it is a little different from the one I used to have.

It's the constant pain that really gets me down, what I would give to have a pain free day!!

Scarlett x

dreamdaisy

I used to think that too but I have changed my mind. You have a pain-free day, lovely, it reminds of you how life used to be but the next day it all starts up again and you're reminded of how much has changed, what you have lost. No thanks. I'll control the pain and get on with it. I cannot stand that mawkish American psycho-speak about 'making pain your friend'. No it bloody isn't, it's my enemy but it will not beat me! DD

woodbon

Hello, I don't have the same problems as you or take the same meds but just to say hello. I know that it is worrying when something thats been helping you has to be changed, but I hope you soon get better blood results and I'm sure they will give you something to help you cope. Lots of love and good wishes Sue.