Enbrel starting day might be on hold

Received a phone call from the nurse today saying that my test results were fine and to expect a phone call from the nurse who will be showing me how to inject myself with enbrel in approx a fortnights time. I'm hoping it won't be before the 19th as I have an appointment with my urologist on that day as I need to discuss some concerns I have before starting TNF drug treatment.

The problem is I have a chronic urological disorder, which means, amongst other things, that I get recurring urinary tract infections. Not only that, and perhaps of more concern is, apparently, and I emphasize apparently, I run a higher than normal risk of getting cancer with my condition. Hence I need hear what my urologist has to say before I start taking a drug that reduces the body's ability to combat the disease. The nurse understood my concerns when I told her and agreed that I should not start enbrel until I hear what my urologist has to say, and to get back in touch after I've seen him.

Interestingly, ten minutes after the phone call, as my wife and I were discussing what had been said, which included me seeking reassurance that I wasn't being paranoid about getting cancer, when I had another phone call from the nurse. She said that they are interested to hear what my urologist has to say and would I be kind enough to ask him to to get in touch. I presume that the nurse must have spoke to my rheumatologist. Not sure why they would want to speak to my urologist - could be just about me I suppose, or maybe to glean some info for future referance??

I've had a really rubbish time since I got this urological condition about 18 months back. It's caused all sorts of problems with treating my RA. Had it pretty much under control with MTX for the previous 9 years but had to stop taking it due to stubborn UTIs, and just to round thing off nicely I go and get smitten (i like that word) :) with sciatica, which has caused me to be more or less house bound for the last 7 weeks. Just hope I get the go ahead with enbrel and it can at least improve things a bit, but knowing my luck!.....

Sorry for the negative post. I really do try to keep my chin up but things have got a bit on top of me of late.

Moan over.

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  • Really sorry to hear about your bladder problems. It is a really good thing that your rheumatologist and urologist want to get together to discuss your condition. It is a much more holistic approach and I wish there was more communication between different departments. I do hope they sort something out, together, that works well for you.

    Regarding the sciatica, I do sympathise as I had it for nearly a year last year. The best thing were the exercises a physiotherapist gave me and which, even though I am better, I still do every day. You can find some on the internet but personal lessons would be best. Do keep moving as sitting around doesn't help. I do Nordic Walking with two poles. I find it helps to loosen the back muscles and takes the weight off the back and joints.Wishing you all the best all round Keep your chin up xx

  • i agree with that, communication sorts all these issues, often we have to be the co-ordinator but its worth it

  • Thats rubbish, just started my Anti TNF treatment after a similar battle following knee surgery and then trying to get funding etc, our lives are basically a battle and a trade off between needing the treatment but balancing against another chronic condition which in our case can be traced back to the RA. i really hope you get this sorted, hang in there, the only advice i have is that the bloody doctors need to get their heads together instead of working in silos, its prob not going to happen but its worth a thought. no you are not being negative just realistic about your situation, i hope for better health for you moving forward, Colin

  • Thanks for the support Hawkeye.

    I'm a one finger typer so was replying to magglen when you posted.

    Edit.... when I had my last pain assesment to qualify for enbrel. I mentioned my concerns to the nurse and she did suggest that I take enbrel info leaflet for my urologist to see. It was a different nurse that I spoke to on the phone.

  • that seems a good idea, hopefully you can get your treatment? sorry about back pain can sympathise have got problems with spine de-generating have finally made the decision to get a wheelchair as was concerned about not leaving the house, an idea for you may be to try to look at starting Yoga or Swimming, may help your back, check with GP first though, Colin

  • Thanks magglen,

    Totally agree with you about my two consultants communicating. Until I knew better, I used to think this was normal practice.

    My sciatica has been extremely painful on times, especially during the first few weeks that I had it. Thankfully it's been a bit easier this last couple of weeks. I try my best to be mobile, but walking seems to make the pain worse and sitting for more than 10 minutes is a definite no no! I have thought about seeing a physio and will have a chat with my GP when I see her in a fortnights time.. I'm having a MRI scan on the 23rd.

  • Wishbone, I'm so sorry to hear of your problems. The lack of things being joined up is maddening, I know all about this since the beginning of the year. I wont go over my tribulations, but as someone who has just started Enbrel, and if you have to have a delay, I'd be inclined to enquire about shingles injection. Maybe that's not suitable for you, but I wish I'd forked out the money for a private injection so that I'd be protected. I know my local surgery in Edinburgh would do it for me. But now I've started anti-tnf so its too late.

    I do hope that you can get some support soon. Look at the thread about mindfulness ...

  • Hi cathie, I didn't even know an injection for shingles was available...shows how clued up I am. We really don't need a dose of that on top of everything else! I'll have a word with my GP when I see her in a fortnight. Could be cutting things a bit fine though as I'm not sure how long I can delay the enbrel for if my urologist gives the go ahead? The mindfulness looks interesting, will give it a proper read later.

    I've been following your Starting enbrel thread with interest - hope it works for you soon.

  • Probably should have mentioned that I'm currently taking lefluomide and hydroxy, which is not controlling my RA very well. My rheumatologist decided to try me on enbrel, not only for this reason, but also should I get a UTI the enbrel will exit my body relatively quickly so I have more chance of fighting the infection. E coli seems to have taken a liking to me and can be quite a bug-ger to shift! :)

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