galatea Posted February 13, 2014 Report Share Posted February 13, 2014 I’m counting down the days till I go into hospital for Octreotide and am really nervous. How does the trial work and any idea why I have to be in hospital rather than just be taught to inject and then go home? Quote Link to comment Share on other sites More sharing options...
corina Posted February 13, 2014 Report Share Posted February 13, 2014 Are you in the UK? I'm not 100% sure but I think that as the octreotide can have some nasty side effects they may want to have you in just in case? I've heeard of others in the UK that were admitted also.I'm in the Netherlands and just got the stuff from my pharmacy and a nurse came once a day to prepare my injections for the next 24 hours and taught me how to inject them (subcutaneous). I did that for 3 months and then started the LAR which was a huge relief as it had to be done just once every 4 weeks (intra muscular). I'm now on a 3 weeks schedule which works best for me. No hospitalization, though I got sick on the second day (sunday unfortunately) and thought to go to bed early. It turned out that my liver and gallbladder didn't like the octreotide, still we persevered and my second blood tests were okay. For me the octreotide is a life saver, it got me on my feet again! I'm sending good thoughts and hope things will work out well for you! Quote Link to comment Share on other sites More sharing options...
galatea Posted February 13, 2014 Author Report Share Posted February 13, 2014 Thanks for the reply, very encouraging. Yes, I’m in the UK. I have no idea how long the hospital visit is going to be, hopefully not long. Quote Link to comment Share on other sites More sharing options...
andybonse Posted February 14, 2014 Report Share Posted February 14, 2014 Galatea please keep us updated im from the uk. Was this mathias or ingles? Quote Link to comment Share on other sites More sharing options...
galatea Posted February 14, 2014 Author Report Share Posted February 14, 2014 Sure, I’ll let you know how it goes. Well it’s Mathias’ clinic, but I’ve only seen Dr Ingle. I don’t think Prof Mathias sees people on the nhs any more. (Although I saw him privately a couple of months ago) Quote Link to comment Share on other sites More sharing options...
corina Posted February 14, 2014 Report Share Posted February 14, 2014 From what I understand dr Mathias doesn't see people via NHS anymore. He does see private patients/ Quote Link to comment Share on other sites More sharing options...
andybonse Posted February 15, 2014 Report Share Posted February 15, 2014 Yes im on private he has retired from nhs. Shame we need more autonomic neurologists! Quote Link to comment Share on other sites More sharing options...
Little Miss Bounce Posted February 19, 2014 Report Share Posted February 19, 2014 Hi Galatea, I see Dr Ingle too, and had an octreotide trial in NHNN in November 2012! I was on daycare ward in the day and put up in the hotel overnight, but the trial took place in the testing rooms in the autonomic unit. From what I can remember they had me lie in a quiet room for ages monitoring bp and pulse then gave me the octreotide injection then waited, then gave me a really sweet liquid to drink while lying down (I couldn't have the milky drink as its too much fat) and then after waiting again tilted me up all the while monitoring my bp and pulse and symptoms, they put me back down and then I went back to the hotel, then the next day at the same time they repeated the test without the octreotide injection to compare! I was told they do it in hospital because of the risk of reactions/complications, and the trial results help with the funding application. They did however forget to tell me not to eat before the test, so I had had lunch which they or I wasn't very happy about, but I had a copy of the paperwork saying no preparation required and knew the name of the person on the unit I rang a few days before just to check there was nothing special I needed to do! He did apologise on the second day for giving me wrong info but they did the test anyway I just had to try and eat exactly the same for lunch on the second day. They didn't show me how to inject or prepare the injections or anything, just asked if I wanted to see the needle, which I was fine with. I then had the results in an out patient appointment in August, and they said they would put in a funding application for it. The funding application went in in the beginning of December, only to find out in January it had been sent to the wrong health board, but eventually forwarded on to the right one! My health board sent some forms to the autonomic unit for them to fill in, but when I still hadn't heard anything a couple of weeks ago I emailed the nurses and had a reply last week saying they are currently discussing the process for providing octreotide to make it easier for patients to access it, and if I haven't heard back in 3 weeks to email again. So I'm still waiting, but hopefully if they do change things it will be a quicker process! I hope I've remembered the tests ok and in the right order, apologies if I've got something wrong, it was quite a long time ago now, and my memory isn't great! I really hope your trial goes well, there's no need to be nervous, please let us know how it goes. And I'd be really grateful if they give you any info on the new process being discussed could you let me know please? Thanks x x x PS Sorry this post is so long x Quote Link to comment Share on other sites More sharing options...
galatea Posted February 20, 2014 Author Report Share Posted February 20, 2014 Thanks for all the info, it’s really good to know. So you’ve been waiting ages to have it! That’s terrible, I was just assuming that since I was having the trial I’d go home with the octreotide. Now I vaguely remember it being mentioned that it’s really difficult to get the funding because it’s so expensive. I’ll let you know how it goes and if they tell me anything about how the process works. Quote Link to comment Share on other sites More sharing options...
galatea Posted February 26, 2014 Author Report Share Posted February 26, 2014 I’m back from the octreotide trial but unfortunately didn’t manage to get much information. The person who did the tilt tests didn’t how the application process works, and the nurse who came and gave me the injection, gave it to me, said see you later, but then didn’t so I didn’t get to ask her either. I spoke to a registrar, who said she’d find out, but I didn’t get to see her again either, but she told me that it would take them about a week to analyse the results and then they’d send a letter saying whether they think it would be worth me taking it. She didn’t know if it’s prescribed from the hospital, or how long it takes, just ‘not too long’. Sorry about that!The first day they gave me two tilt tests, the second one after a milkshake, the second day they did the same, just before with the octreotide. To be completely honest the injection hurt more than an ordinary one. With the octreotide I felt much less symptomatic on the tests, but then I asked the general ward doctor to look at my notes and he said he couldn’t see that there had been any improvement in bp and heart rate with it, but he didn’t want to say anything for sure because he wasn’t the specialist. Anyway, just have to wait and see! Quote Link to comment Share on other sites More sharing options...
corina Posted February 26, 2014 Report Share Posted February 26, 2014 I´m sorry this trial wasn´t what you´d hoped for (at least that´s what I think reading your post!). But don't give up hope yet! I agree that the subcutaneous injections are quite painful. What helped me was warming them before injecting. The LAR is injected in the buttock which for me is better. I hope it turns out the med is working for you and that you will be doing better once on it! Quote Link to comment Share on other sites More sharing options...
galatea Posted February 26, 2014 Author Report Share Posted February 26, 2014 Thanks Corina, yes I’m not sure what to expect yet, maybe they’ll say I should try it, maybe not. If I do, I’ll take into account the warming up thing so that it’s less painful. If it works it’s definitely worth it despite the injections. Quote Link to comment Share on other sites More sharing options...
galatea Posted March 28, 2014 Author Report Share Posted March 28, 2014 Just some information for those of you interested in the Octreotide process.I got a letter today saying it was beneficial for me and my heart rate was lower on the Octreotide so I can take it.Anyway, it says that recently they have been given a greater degree of freedom to prescribe (there has been a significant fall in price) directly from the hospital without necessarily going through a protracted period of funding application first.Hope this is useful! Quote Link to comment Share on other sites More sharing options...
corina Posted March 30, 2014 Report Share Posted March 30, 2014 That's really good news galatea! Hope yuou will start seeing improvement!!! Quote Link to comment Share on other sites More sharing options...
Little Miss Bounce Posted March 31, 2014 Report Share Posted March 31, 2014 Thanks for the info Galatea, I'm really pleased it was beneficial for you! I actually had a phone call earlier to say the hospital had approved my funding, and I am going into NHNN in May to learn how to inject it! ? Thanks for your help Corina & Galatea x x x Quote Link to comment Share on other sites More sharing options...
corina Posted April 1, 2014 Report Share Posted April 1, 2014 Glad for you Little Miss Bounce, there's hope!!! Quote Link to comment Share on other sites More sharing options...
galatea Posted April 1, 2014 Author Report Share Posted April 1, 2014 Thanks Corina, and that’s great Little Miss Bounce! Hopefully we’ll both see great improvement on it! Quote Link to comment Share on other sites More sharing options...
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