has anyone else had problems trying to get on stz or ... - NRAS

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has anyone else had problems trying to get on stz or mtx because of liver and constant infections

bunny1 profile image
6 Replies

i have been trying for the past 10 months to get on something that will help me,i`m drugged up to the eye balls with painkillers,morphine patches and steroid jabs,still swollen and in lot of pain,i`v started and stopped slz 5 times now, soon as my nurse tries to up the dose to more than 2 a day my liver goes mental,so she decided to try mtx,had the blooods done,had chest x ray,but i have just had one infection after another,got infected tonsilitis now,i don`t know what to do,i`m so fed up,anyone else had this,what happened,did you manage to get things sorted,please,anyone with bit of good news please!

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6 Replies

Hi there, seems you've got us foxed! Have you tried the NRAS helpline? If I was in your shoes I know I'd be doing everything I could to boost my overall health - fresh veggies left, right and centre, as much exercise as I could manage etc. But I expect you're trying that. Did you actually get on to MTX or have infections prevented you from even starting it?

Hope the tonsilitis gets better soon, wish I could help more but don't stop trying to find answers and suggestions,

Christina x

Yes I agree with Christina - there's nothing more I can suggest either apart from total avoidance of alcohol - which you are probably doing already (although sometimes the pain and worry might tempt us in the other direction understandably). Every time I drink even a couple of glasses over a week my GP phones to say that it's showing up as toxicity in my liver so I know that teetotalism is the only way to go if I want to stay on MTX. Some bodies just don't like this stuff at all - hope there is some solution to your dilemma - I agree about phoning NRAS helpline too. Tilda x

Hi Bunny1

I'm sorry to hear you're having such a difficult time finding a medication that you can tolerate well, it really is a case of 'trial and error' with the RA medications unfortunately. It may take some time to find a drug or combination of drugs that suits you well and gets your RA under good control but there are lots of possible options. As the others have mentioned, you would be more than welcome to give us a call here on 0800 298 7650 (9.30am - 4.30pm, Monday-Friday) or email us on helpline@nras.org.uk if you wanted to discuss things with us. It would also be worth contacting your rheumatology team to find out what their thoughts are on the next steps for your treatment.

We have quite a lot of information about all of the DMARDs (disease-modifying anti-rheumatic drugs) used in RA on our website so that may be useful, to see some of the other possible options: nras.org.uk/about_rheumatoi...

I hope you manage to find something suitable soon.

Kind regards

Sarah Kate

NRAS

earthwitch profile image
earthwitch

You need to have a really good talk with your rheumatologist. If you can't take the DMARDs then they need to be offering you anti-tnf drugs - not steroids. Unfortunately you will have to get over infections first before starting those, but potentially they could make a huge difference and mean you won't need anywhere near the amount of pain relief.

bunny1 profile image
bunny1

thanks for your answers i`v spent the whole week trying to get hold of my RA nurse,she`s so busy,i have`nt had a drink for 3 years,was looking after my dad for a while with cancer,and then few months ater he died this all started happening,tried slz,,5 times and every time had to stop,it`s so frustrating,every time i go to start the mtx i get infection,or indigestion probs,i`v an ulcer,omg,i sound like right whinge, but i`m just so fed up,i`m so swollen that i`m in wheelchair,i was always so active,working,looked after my parent,my kids,good social life,and now just feel so useless,y poor kids, (well their adults,but still my kids) their stuck with looking after me,can`t even have my gorgeous grandson on my own,when i used to take him out all the time,i`m hoping now once this infection goes i can do something,i`ll get my son to take me to hospital and sit in clinic till i see my nurse,had enough now,be bit more demanding i thinkl,lol,again thank you all for take the time to answer me x

bunny1 profile image
bunny1

earthwitch, meant to ask what are anti-tnf drugs?

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