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Octreotide Injections For Paf How I'm Getting On


karenw
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A while ago I posted a question to see if anyone else had tried these octreotide injections. Not many had, so I thought you might like to know how I'm getting on. Initially, I was nervous about self-injecting, but 2 sessions with a hypnotherapist and one with the nurse helped greatly. I am now injecting twice a day (3 x if I'm teaching) and I have noticed a big improvement in my day to day life.

I used to be very bad in the mornings; dizziness being a really big problem. Walking anywhere involved stopping every 5 steps to catch my breath etc. Since taking the octreotide (combined with midodrene pill), which I inject into the fatty layer of my stomach, I have noticed that I am able to eat a sensible breakfast without the associated light headed feeling food used to induce, and am able to do jobs around the house such as hoovering, cooking and so on. I am also able to go to the supermarket to do a family shop straight away. Before I used to have to plan these visits to a time , usually in the afternoon, when I was feeling up to it. The injections have enabled me to go for 'normal' walks with my family, without stopping and waiting for Mum to catch her breath or stop seeing stars every few minutes.

It really has improved my quality of life. I even feel 'normal' for the first time in years! Something I had forgotten about.

The downside is that initially the drug did upset my stomach, but that seems to have subsided. I don't always have success with the injections, and end up with some bruising, but not often. Also, they only last about 3/4 hours.These things a small price to pay really.

If anyone wants further details, I would be happy to tell them more.

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I'm so glad you're doing well with the octreotide. It sounds like your everyday life has improved greatly.

I've had good results also. I'm not able to walk much since I can only stand for a short time before I get too lightheaded. The octreotide helps me to stand a little longer (maybe 5 minutes instead of 30 seconds). If I go somewhere I use a wheelchair. I took a third shot one day when I really needed it, but I wasn't sure I should have. I'm going to ask my doctor about it.

Congratulations on giving yourself the shots. I was relieved when I was finally able to do it. I also bruise myself sometimes - I don't know why.

Thanks for the update - I was wondering about you.

Karen S.

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I'm very interested in hearing about your experiences with this drug. Its one of the only possibilities left for me. My diagnosis is "severe autonomic neuropathy". In practical terms, my blood pressure crashes everytime I'm upright. My symptoms seem very like yours...I have a difficult time performing basic daily tasks without becoming sick in one way or the other. Extreme pooling seems to be a huge part of my problem, and octerotide should off-set some of this. My only concern is getting my insurance to cover this treatment.

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I'm very interested in hearing about your experiences with this drug. Its one of the only possibilities left for me. My diagnosis is "severe autonomic neuropathy". In practical terms, my blood pressure crashes everytime I'm upright. My symptoms seem very like yours...I have a difficult time performing basic daily tasks without becoming sick in one way or the other. Extreme pooling seems to be a huge part of my problem, and octerotide should off-set some of this. My only concern is getting my insurance to cover this treatment.

I am fortunate that the National Health Service here in England is paying for my treatment, although it is not always a 'given' as General Practitioners have to stick to quite tight budgets. Luckily for me, my doctor followed the Consultant neurologist's advice and decided the improvement in my quality of life would justify the cost. He looked up the costs, and when he worked out the amount I was going to take, it wasn't quite as expensive as he had at first thought. (25 mcg x3 a day)

I am presuming you live in the States. One American person I spoke to on this forum was able to obtain octreotide on her Medical insurance, but someone else was unable to do so. It's all such a lottery, it seems really unfair.

Anyway, I wish you lots of luck. I know how debilitating it is when every movement is an effort - I didn't just see stars, but the whole galaxy every time I stood up! Best wishes, Karen.

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eating is a nightmare for me and i really wanted to try these injections but my doctor is too worried to let me try them at home and said i would have to be monitored in the hospital which i would never agree to, but you are doing it yourself at home right? guess your doctor is more open minded, lucky you! is there anything serious you need to worry about when doing these injections? any data or articles you might know of that i could give my doc might help to convince her, thanks

Radha

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Hello Radha,

I have a slight phobia about needles, and yet I am managing OK at home. Basically, I was taught by a nurse how to do it at the surgery. She inserted a needle into my stomach , and I pushed in the drug. Then I had a go at just putting an empty needle in. My husband was there too, and he had a go at inserting the needle. Now I know what a pin-cushion feels like! Anyway, it was nowhere as bad as I'd expected.

Now I'm doing the injections at home, it has been fairly straightforward. I don't have to 'swab' a site or anything, just pick a fleshy part of my stomach (unfortunately, there are many!) and stick it in. I put an ice pack on first, which numbs the surface a bit. The only problem I have experienced regarding the jabs, is that sometimes I bruise quite easily. I haven't figured out why I am sometimes bruising and at other times I am not. I might ask the nurse about that.

It sounds to me like your doctor is being a bit over-cautious, though he/she might have other concerns relating to you in particular. When you think about it, thousands of diabetics self inject quite safely every day. Why don't you ask again? Perhaps there is a particular reason why it's thought it might not be a suitable method for you which wasn't fully explained.

I can only reiterate that at the moment it's working very well for me, and making a big difference to eating/mobility and general well-being.

Good luck! Best regards, Karen.

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Guest tearose

Okay, maybe a silly question but this drug sounds hopeful but very painful.

Can this drug be made into a compound and rubbed onto your skin?

tearose

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It's honestly not too painful. I'm a wimp, so if I can do it, anyone can! I believe there is a long-lasting shot, Octreotide LAR, which only needs administering once a month, but that is not suitable for me, because my blood pressure is extremely low in the day time when standing, eating etc, but it goes up too high at night when I am lying down. It might be the answer for you though.

Don't let the jab idea put you off from trying it though.

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Guest tearose

Okay, another silly question, why isn't it available in an oral formula? Is it unstable or unable to take in a pill or liquid?

It is so good to hear that you found a way to function so much better. I hope you keep having strong full days!

best regards,

tearose

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I did ask at the hospital if it was available as a pill or lotion, and the girl who was administering the tests did some research and couldn't find any alternative. (But she was a scientist rather than a doctor) It has to be administered subcutaneously (into fatty layer under skin, not muscle) to be absorbed properly I think. I don't really know any more than that, sorry.

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Hi,

There is an article, but I am not sure how persuading it would be. Not sure of any others. You can look on google, pubmed, medline, etc.

Robert D. Hoeldtke, Kimberly D. Bryner, Martin E. Hoeldtke, Gerald Hobbs. Treatment of autonomic neuropathy, postural tachycardia and orthostatic

syncope with octreotide LAR. Clin Auton Res (2007) 17:334?340

Hope that helps!

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