Finally wrote a letter

To GP and consultants.

I'm so fed up of feeling rubbish. There is currently still no advice line. I've felt awful for months. My knee is swollen again and I'm walking around on crutches.

I've been on leflunomide for ages...apart from break when gastro told me to stop. It's clearly not working. I told rheumatologist this months ago, after another flare. I was told to stay on it as I was running out of options! Seriously? I've tried two drugs.

Recently I've had iritis, terrible stiffness, hip, neck, achilles tendonitis and awful knee pain.

I was given a steroid shot that helped with stiffness and hip pain, but not for wide spread tendonitis. I was offered a cox2 inhibitor which I initially refused (I have diverticuler disease) I think drug induced. I was pretty sure I shouldn't be taking a Cox2 due to the fact I'd had colitis with some bleeding. However, I was in agony, so took it as it had been offered. Oh the pain! Turns out I was correct and it shouldn't have been prescribed.

I've been iron deficient since May. Only found out when I recently checked bloods. No one thought to inform me. Iron levels were 8. Now been given iron tablets.

I'm fed up. So I wrote a polite letter asking for different treatment. I also queried being given a Cox 2 inhibitor.

This has gone on way too long.

8 Replies

  • Sometimes we just have to push hard and try to be heard. There definitely seems to be widespread reluctance to put patients on new more expensive therapies unless the situation is desperate in the eyes of the NHS doctors. I too have been suffering masses of Tendonitis which all flared up shortly after I was taken off Humira, several months later approved for another biologic, I was then asked to wait a further four months as the steroid injection had made things in general more bearable. Sadly in these times of NHS crisis budget seems to be playing a much more significant role in our treatment these days and preventing us from being prescribed treatments that could be life changing.

  • Sorry to hear you've been suffering too.

    I've been very patient, but actually I have not been able to work for three years. Poor treatment is surely not cost effective in the long run. I'm now on benefits.

  • In similar boat work wise it's frustrating and definitely not cost effective!

  • Hi, please may i ask which drug contributed to your diverticular disease. x

  • I think nsaids. Was on them an awful long time.

  • I could have written this post. Sorry to hear about your troubles by the way. The loss of the advice line and a cancellation of my Rheumatologist Nurse Appointment means it will be 1 year between seeing my Rheumatologist consultant, which in a fast moving disease like PSA or RA, is ridiculous. Not happy. Hope you get something moving after your letter.

  • Sorry to hear that.

  • Hope your letter is taken on board and you can feel better soon. I had to write a letter a couple of years ago to get my rheumatologist to take action as nothing was getting passed up to her properly from me seeing another junior consultant and the nurse. She was shocked to know things had got so out of hand. Anyhow if it's in black and white and on your file and polite but firm as yours is then we are more likely to get action and help. I do hope so for you. x

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