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Subject: Re: for julie
Hello Julie Don't say sorry about asking questions, I don't mind telling you about my experience with RA. It's such a complex illness and still after having it since 2008 I am still learning things about it. You asked about sulphasalazine(SLZ), it's long story here but I will try to be brief. When I was first diagnosed I was put on SLZ, 4 a day, it was then increased to 6 a day. June 2010 I had MTX added... 20mg by tablet. September 2011 it was changed to injection. When you inject it you get all of the dose, if you take it orally you lose some of the dose whilst your body breaks it down. My consultant at the time told me that a few extra milligrammes could make a lot of difference and he was right I started to feel the best I had felt for a long time March 2012 I had a raised ALT (liver function test) and I had to come off all of my drugs, the only pain relief I had was paracetamol. You know when you are doing well and you think to yourself....Do I really need to take all of these drugs?....well I found out after about two weeks that I did need them. I was then introduced to the wonders of orally steroids and felt wonderful. During the time that I was off all of the drugs I was sleeping so much better that I had been since diagnosis. I realised that SLZ was disturbing my sleep (it is one of the side effects). So, when I started back on my DMARD's I was told not to take SLZ, I was still prepared to take it but my consultant told me not to. My MTX dose was put down to 17.5mg. So there I was, reduced MTX no SLZ so when I had weaned myself off steroids the inevitable happened.....I started to go downhill quickly. I saw the specialist nurse in the August and she did a DAS score and I scored 7.2 I think that if it is over 5.2 then you qualify for anti tnf's. At that time I was looking after my grandchildren and I was taking them back home so the nurse gave me a steroid injection. I told her about SLZ and that I was prepared to give it another go, she told me to take 4 a day and said that by the time that I had my next assessment they would know if it had helped. My next assessment was to be 6 week later, she said by then the steroid injection would be getting out of my system. My CRP at this time was around 87. At the next assessment I scored 5.9, my CRP was then around 60. I had qualified for anti tnf's. Whilst I was waiting to start Enbrel I just got so bad, heaven knows what my CRP would of been. I started Enbrel in the November and was told not to take SLZ anymore. I have fished out a booklet that NRAS sent me about biological drugs, this is what it says about taking MTX with anti tnf's. You usually take MTX in combination with TNF blockers and almost always with infliximab (NICE only approve infliximab if combined with MTX)because these two drugs work well together and give a better outcome than either alone. I am to see my consultant in August and I have put a note on my calendar to remind me to ask him about it. You asked what my CRP is at the moment. They normally like your CRP to be in single fingers. Since being on Enbrel the lowest mines' been is 8 and the highest is 12, at my last blood test it was 10. I don't mind injecting myself. If you have to do it then you have to. I could of gone to the hospital for my MTX injections but I didn't want the hassle of all of that. I don't think twice about injecting MTX, it is over in a minute and normally totally pain free. I don't like injecting Enbrel in case it stings. The first time it did sting bad I pulled the needle out!! I now just sit there saying to myself....Don't be a wimp, it's worth it....I just have to think that a minute of discomfort once a week is a small price to pay to be pain free!!!! Just wondering how lol is getting on with her MTX. Well, so much for a brief post!! Paula x
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