karenw Posted May 28, 2009 Report Share Posted May 28, 2009 As I just said on a post to Babette, I haven't been on this site for ages.I have PAF, which seems to be a 'minority' condition on Dinet, but seems to share common features with other subscribers. Anyway, I thought you people might like to hear some more upbeat news, so here goes!My condition causes me to feel very faint after food ( extremely low blood pressure) and exercise. This obviously makes day to day activities a chore, and involves careful planning to do things when I am feeling up to it. I had been getting steadily worse, and after another round of tilt tests etc etc at St Mary's Hospital in London, my consultant suggested I try octreotide injections 3 times a day before food. I was something of a needle phobe, so I had a few sessions of hypnotherapy ( sounds new age, but it worked for me!) and am now able to self administer these injections subcutaeneously 3 times a day. I also take midodrene, ephidrene and fludrocortisone. To cut a long story short, the injections have really improved my quality of life. I am able to do things I was really struggling with prior to starting on them. Every day stuff like shopping, short gentle walks, and socialising without feeling like a complete invalid all the time. I still get dizzy episodes, especially at night. (The last one resulted in a fall down the stairs and a trip to hospital) but generally, I feel so much more in control, which I think is the most impotant thing for me. I hate feeling like an ill person, when in my head I am not!I was very nervous about starting the injections. There were a few side effects to start with, but they have settled down now, and I can honestly say, the benefits outweigh these.Feeling better also gave me the confidence to join an Art and Creative media group that someone started off locally. We are a bunch of keen amateurs ranging in age from 27 to 83, and come from all walks of life, and in various stages of good/bad health.We started our meetings in a local pub and things have progressed from there. Our numbers have grown and we are now hiring a church hall to accomodate everyone, even thinking about having to have a waiting list for members as we are getting too big a group! So far we have done life drawing, acryllics, sculpture,painting in the countryside, clay work, mosaics, calligraphy and even decorative cake work. There is no end to what we are prepared to have a go at! I would never have joined before starting my new medications, as I worried about how I would feel all the time. Scared I might faint or something. I have made some great new friends, who know about my condition, and are very understanding . I have also developed a love for painting, especially in acryllics. It's a new found skill, and something I can get completely 'lost' in, sometimes to my family's disappointment, as meals are rather late appearing when I'm painting! Anyway, I hope this letter has cheered a few people up. I know that being poorly can really get you down, but it is nice to hear good news every now and again too, isn't it?Best regards to everyone, and if you haven't picked up a paint brush for 30 years ( like me) why don't you give it a go? Karen Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 28, 2009 Report Share Posted May 28, 2009 I am very happy for you. Thanks for sharing and may you have many more wonderful days ahead! Quote Link to comment Share on other sites More sharing options...
gwensvilla Posted May 28, 2009 Report Share Posted May 28, 2009 My daughter has POTS and she also went to see her fabulous consultant at St Marys, did various tests, also diagnosed with eds.. the consultant was fairly sure which route he wanted to go. We had to return to the Neurological Hospital in London for further tests (and of course a further 6 hr each way ambulance ride.. as my daughter could not sit up without fainting..) He started the OCTREOTIDE 3 times daily and she is now FUNCTIONING!!!, she can walk a bit, (round the house, to the car, sometimes even from the car around a shop), she can stand, sit and she can now eat, and even sleep.. the improvement was virtually immediate and she is now trying to recondition from the bed bound..(struggling trying to get to a physio who understands the condition, and we are about to invest in a recumbent bike..) she has a big part of her life back. She had worked out that it was food orientated and in particular sugars and carbs. (We need to thank a member of this forum for helping with us on that, she knows who she is... and thanks) We have worked out a diet of safe foods, which along with the octreotide is proving amazing. I would recommend anyone who feels there is a connection to eating or post eating or abdominal pooling to give this a whirl.. my daughter could not tolerate midrodine as it made her really ill, so we are grateful for this.. it gives her 10-12 hrs of a day.. and we are hoping to extend to a 4th dose and try to byild up strength and stamina (carefully because of the eds!!)We have a huge thanks to give our Professor in London!!! Gwen Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 29, 2009 Report Share Posted May 29, 2009 Congrads - ocreotide sounds very promising for those patients that have blood pooling in the abdominal area or who suffer postprandial hypotension. Unfortunately, it is also expensive so its very hard to get a script for (ive asked two doctors without success). Quote Link to comment Share on other sites More sharing options...
pat57 Posted May 29, 2009 Report Share Posted May 29, 2009 Very nice. Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 29, 2009 Report Share Posted May 29, 2009 Thanks for sharing some good news.Enjoy your painting!!! Quote Link to comment Share on other sites More sharing options...
kschoon777@yahoo.com Posted May 29, 2009 Report Share Posted May 29, 2009 Hi Karen - I'm glad everything is going so well for you. I'm taking the same medications as you are with the exception of ephedrine for my PAF. Does that require a prescription or do you buy it over the counter. I think in the US its not as accessible as anywhere else. I just need a little extra "something". Also, what dosage do you inject of the octreotide? Quote Link to comment Share on other sites More sharing options...
Radha Posted May 30, 2009 Report Share Posted May 30, 2009 i want to try octreotide so badly but doctor says its too risky doing it at home and will not let me try it, its so frustrating!Radha Quote Link to comment Share on other sites More sharing options...
Csmith3 Posted May 31, 2009 Report Share Posted May 31, 2009 KarenW, GwenGreat stories, really made me smile - thanks so much for sharing.Cath Quote Link to comment Share on other sites More sharing options...
karenw Posted June 1, 2009 Author Report Share Posted June 1, 2009 Hello again everybody. I am doing a 'group' reply, I hope that's OK.Gwenda. Glad your daughter is responding so well to the octreotide. I'm guessing you also see Prof M. We're v lucky to have him here in the UK, as he's such an expert on our condition.I also noted carbs were particularly bad for me. I don't know how old your daughter is, but I would also suggest she avoids alcohol. No fun I know, but it has a disastrous effect on me, really worsening the dizzines. I've had a few embarrassing moments at parties, dinners etc when I've passed out after food and a glass of wine. People who don't know me assume I've had far too much to drink! So now I'm v cautious. I stick to just one glass and then lots of water, or have a spritzer or something less alcoholic.Ramakantesh. I'm fortunate to get octreotide on the National Health Service, but I do keep the cost down by obtaining 2 doses of 25mcg from one glass vial. Initially, I was taking out one dose and throwing the remainder away, but the doctor said providing I adhered to stringent hygiene, I could safely halve the cost by taking out the 2 doses. Is this any help?Karen Sch. Hi there! Long time , no talk! Glad to see you are still keeping an eye on posts. To answer your question, I get the ephedrine on prescription and take 2 pills of 15mg before rising and 2 more before lunch. I don't take them at night as they make my heart race a bit and make me a bit 'hyper'and restless, but I do take them if I'm going out or planning something other than quietly watching TV at home. Re. octroetide dosages, I take 25mcg 3 times a day, before meals. What dose do you take? Hope things are good in sunny California!Radha. I understand your frustration. Your doctor seems incredibly cautious when you consider how many diabetics self-inject every day. Perhaps it's the actual drug, octreotide, he/she is nervous about. I gather it is still a fairly new and controversial treatment. Also, as someone said, it is expensive.It's more commonly used on Cancer patients, and I had heard that the blood pressure raising effect was discovered more by accident than by design. I have continued on my starting dosages without any ill effects after 10 months continuous use. Perhaps if he started you off on a much lower dose he could be persuaded ?I hope I've covered everyone's questions.Best Regards, Karen Quote Link to comment Share on other sites More sharing options...
flop Posted June 1, 2009 Report Share Posted June 1, 2009 Re starting Octreotide at home - I know Prof Mathias admits all patients that he is considering starting on Octreotide so that the BP response to the injections can be closely monitored and you can learn the injection technique properly. I don't know if he previously used to let people start on it at home?He has mentioned that it may be a possibility for me but wants to try other medication tweaks first.Flop Quote Link to comment Share on other sites More sharing options...
goldicedance Posted June 2, 2009 Report Share Posted June 2, 2009 I benefitted greatly from octreotide. I didn't have blood pooling.I didn't have to stay in hospital for monitoring.I learned to give the injections (every few hours at home) - no problem. Eventually, I could use the monthly long acting octreotide.I was getting great results. Eventually I had to stop because of high blood pressure and gall bladder problems. At that point my endocrinologist and my internist did not want me to continue.It was fine while it lasted - about 10 months.Blue Cross covered the cost of the injections. Quote Link to comment Share on other sites More sharing options...
gwensvilla Posted June 2, 2009 Report Share Posted June 2, 2009 I benefitted greatly from octreotide. I didn't have blood pooling.I didn't have to stay in hospital for monitoring.I learned to give the injections (every few hours at home) - no problem. Eventually, I could use the monthly long acting octreotide.I was getting great results. Eventually I had to stop because of high blood pressure and gall bladder problems. At that point my endocrinologist and my internist did not want me to continue.It was fine while it lasted - about 10 months.Blue Cross covered the cost of the injections.Yes Prof Mathias admitted us, Flop you are right he wants it done initially in a monitored environment... he has a great autonomic nurse also..who gave us loads of practical tips aswell...Lianne also gets 2 doses out of a phial and unlike me (needle phobe) she has no problems injecting herself... ref the month long version... would this actually work..for this application... we are well pleased with the current situation with the octreotide, as I said previously atleast she is functional now.. a transformation to the bedbound, non functional situation we were in.. now trying to contend with the swollen feet situation, its always one step at a time.. Gwen Quote Link to comment Share on other sites More sharing options...
karenw Posted June 2, 2009 Author Report Share Posted June 2, 2009 Re starting Octreotide at home - I know Prof Mathias admits all patients that he is considering starting on Octreotide so that the BP response to the injections can be closely monitored and you can learn the injection technique properly. I don't know if he previously used to let people start on it at home?He has mentioned that it may be a possibility for me but wants to try other medication tweaks first.Flopre. home injectionsI had one injection of octreotide whilst on the tilt table at the hospital so they could monitor my responses, and being happy with that, they let me do them at home after a brief demo by the practice nurse. p.s. I can do them much less painfully than that first one! Quote Link to comment Share on other sites More sharing options...
goldicedance Posted June 2, 2009 Report Share Posted June 2, 2009 Glad octreotide has made life more bearable.I used the long acting octreotide with supplements of the short acting as needed.Frankly, I am surprised that more doctors/patients have not given it a try.At my peak on octreotide, I could stand for about 50 minutes without significant bp and hr changes. That certainly was not the case. It took about 7 months before I saw such results.If I were suffering so from POTS and had not already given octreotide a try, I would be asking my doctors about it. The big drawbacks are cost (my insurance covered it as a prescription drug and I could get it mail order), speedy action in the digestive tract (a plus for some) and eventually gall bladder problems. Quote Link to comment Share on other sites More sharing options...
gwensvilla Posted June 2, 2009 Report Share Posted June 2, 2009 were the gall bladder problems from the octreotide??? and was the long acting one as effective as the daily injections???my daughter is on 3 injections which gives her a time span of function 10-12 hrs... (at the moment she is still too fatigued to extend to a 4th dose which the prof says she can try... Gwen Quote Link to comment Share on other sites More sharing options...
Radha Posted June 3, 2009 Report Share Posted June 3, 2009 how did you get your doctor to give you octreotide? did you have to do alot of convincing? Radha Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 3, 2009 Report Share Posted June 3, 2009 its expensive so not commonly prescribed. There are formal studies evaluating its efficacy right now so once they are published it might enable patients to arm themselves with a bit of research to justify the script. ive never heard one patient have a bad experience with it. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted June 3, 2009 Report Share Posted June 3, 2009 I found the long-acting pretty effective. Ocassionally I had to use the short - acting for periods of extreme activity or by the end of the month.Gall bladder problems can be a side effect of octreotide. I would still be on octreotide if not for the fact that it increased my blood pressure too much. Given the problems I was having, we decided to stop.Search on RHoeldtke for his studies using Octreotide. My insurance did cover the costs. The self-injections were easy.Lois Quote Link to comment Share on other sites More sharing options...
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