I've been up a while, not because I have trouble sleeping but because I'm still so upset after my visit to Ipswich Hospital. Until recently I have trusted them to give me the best treatment available for the arthritis that I have been blessed with.
This last flare-up which started in February has been so painful and draining that every time I speak to anyone about it I end up crying, this gets me nowhere and just leads them to assume I'm depressed. I'm not at all depressed just fed up with being in pain. Yesterday I was told that I could have stronger painkillers (opiates) to help with the pain and help me get some sleep. This annoys me as I have never said I have trouble sleeping - I've had periods of insomnia in the past due to emotional distress but at the moment I'm in a very happy relationship with a very nice man who I adore. We walk our dogs together, cook for each other and he never upsets me or stresses me. My family and friends love him so I usually have absolutely no trouble in the sleeping department!
I'm upset and cross because the nurse who said I needed painkillers to sleep several times yesterday didn't listen to a word I said. I need painkillers right now. I'm waiting for them to work so that I can have a bath, do my chicken duties and then go to work.
I need them to aid my normal daily life, walking from the bed to the bathroom, more of a stumble and a bit of a swear really if I'm honest!
My x-rays from 2009 and 6 weeks ago are also ready for me to collect, three forms of ID including one photo one and one which is a utility bill plus a tenner in my bag with my knitting....except that there was along wait, my appointment was 3.50, I got to Rheumatology at 3.45 (a record!) and was seen at 4.40, by the time I had been seen by two nurses and sent for x-rays and a bloodtest for something I haven't been tested for before (I forget now what it was but it's to do with 'markers' again) the office I could collect the disc from was closed! Ho hum...
I did get to see my hand x-rays though not my feet. They use the word 'reassuring' a LOT! X-rays of my hands show no erosion but one nurse did admit that there is twisting and deformity showing, particularly in my thumbs. My feet were x-rayed again, oblique this time as there are signs of change apparently. They may ask for a scan to determine what is soft tissue....I just know that they hurt all the time and when I walk I get striking pain where my toes join my foot.
So along with yet stronger painkillers they are suggesting I try yet another DMARD - Leflunimide. I've tried two already the (as a twitter friend and fellow PsA sufferer describes it) Sunny D of the drug world, Sulfasalazine and the oh, so scary Methotrexate. Both requiring fortnightly visits to the Vampire for blood tests to monitor the effects on my organs.
Maybe they are hoping I get so zoned out on the opiates that I stop fighting and just sleep all the while...(this is a joke BTW!)
NICE guidelines say that after trying two DMARDs that patients with inflammatory arthritis should be put forward for trials with anti-tnf treatment. These are three month trials and that's because it works fast, in as little as THREE weeks sometimes. The traditional DMARDs take around three months to show any effect. I tried Sulfasalazine for a year, Methotrexate for 15 months and there has been no noticeable slowing down of the changes in my hands.
I didn't have enough qualifying joints yesterday, plain and simple.
It's unfair.
I think it's unjust and immoral that because a PCT has recently tightened up the guidelines that until 6 weeks ago I would have fitted into I am left in pain and having to start slowly introducing another DMARD into my life and wait to see if it is the thing that will work for me. You do it slowly because the side effects are pretty unpleasant. Nausea, hairloss etc.
The reason I'm so upset is because arthritis doesn't only affect the joints, it affects the internal organs too, MY internal organs. Anti-tnf treatment can cut the risk of stroke and heart attack by 50%! It can reduce the need for hip and knee replacements. It could prevent my hands and fingers from becoming deformed and mutilated by this sodding disease.
Nice one Ipswich Hospital!
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