A good experience and another much less so!

I was thinking of writing about a brilliant experience I had with the cooperation between my local GP and chemist. There'd been a mistake on my repeat prescription for a diabetes injection which I needed urgently as I'd left mine behind at my fathers - was looking after him at the weekend. ANd they managed to get it for me within three hours by liaising over the phone. What a relief!

But then round about 8.15pm I received a phone call from a doctor at the hospital where I get my RA treatment. I had asked my GP to request an early appointment with the consultant to talk about my medication following another episode with light sensitivity back in March. And this late phone call was to tell me that maybe I have lupus (the doctor has never seen me) and that I should come off infliximab. He had the impression that the light sensitivity was acute and recent. But I've had three episodes since 2004 and was just wanting to talk about how to manage it. If necessary I can sit under my hat and keep in the shade. I laid it on very thick that I was depending on my next treatment to see me through the difficult time I'm having with my father (101, congestive heart failure and failing fast). I have to go to help look after him, but he's at the other end of the country.

So now I'm really apprehensive. Will they stop my treatment on Thursday morning or will it go ahead? I was actually feeling better than usual ! I've decided to go to see one of the GPs so that I can see exactly what they've written to the hospital. So that will throw out all the things I was planning to do tomorrow morning!

Life with RA is a roller coaster isn't it folks. It just underscores the need we have to really use the time we have available to us as well as we can. Hopefully this latest will become clearer, and I have kept good records of my treatment so I can go forearmed. But there always seems to be something unexpected to trip you up.

12 Replies

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  • Oh dear Cathie that sounds so annoying and worrying for you when you've quite enough on your plate with your father just now. I have that same feeling of exasperation when my GP emails my consultant and between them both they manage to get the wrong end of the stick - or everything is so delayed by them communicating with each other about me that things have progressed or changed by the time the message comes back to me. It's like Chinese Whispers! I really hope that you get your infusion and can have an appointment with this consultant very soon so you can put them straight. TTx

  • Thanks tilda. I think we live with so much uncertainty that medics getting all mixed up is so damaging. I thought id learned how to manage this but theres always some new twist!

    It helps to have this sounding board. Ill keep out of the sun as much as possible now xxx

  • Thankyou. Im waiting for gp to phone. Since when did they get in to phoning us? Email would be better as phone is so fleeting.

  • Its a bit of a nuisance Cathie, just when things seem to be going ok, some other thing crops up. Hopefully you will get it sorted.

  • Thanks Mads. The anti-tnfs are really good, they get you back on your feet, but its hard to plan far ahead when things go awry and they start talking about withdrawing it!

  • It sounds as though the mix up is at the hospital end, the GP wrote what I asked her to - to have a calm appraisal of my meds. So tomorrow morning should be interesting when I meet the enthusiastic young man who phoned me in the evening with an off the cuff diagnosis of lupus!!!

  • Good luck Cathie, hope you can get it all sorted.

    Paula x

  • Just to say I kept quiet about this phone call when I went for my infusion today. This confirms that one bit doesn't connect with the other. But they're really superb at their jobs in the day unit where I go and they were all taking about the transformation of ra care over the past ten years

    Xx

  • There is a special blood test tat can detect lupus I believe. not sure how they can diagnose without this this special test? fingers crossed it isnt I have a colleague with lupus she can barely manage 16 hours ( her contract she is v poorly im more fortunate with Ra I am now doing 27.5 hours.

    I Pleased you got your insulin sorted though.. do you use prefilled pens? xx

  • Thanks summer. I think the person who phoned me was a young medic over reaching himself and I'm planning to write to complain. No one else has mentioned lupus to me.

    I don't use insulin, but byetta. I've just started this month and it's made a big difference to my glucose levels. As you probably know it comes in a prefilled pen which lasts about a month.

    How are you? The last time I read Your blog you weren't that well

    Xx

  • Yes I am familiar with byetta you are type 2 then.. I have had a cold and now cough! entering its 3rd week today!. only had a part day sick not last thur but the one before they sent me home as coughing and spluttering so much.. it is going round at work. I got it from somewere and now 2 or 3 others have it x

  • I think colds can be hard to shake off this time of year. Hope you get well soon

    X