Octreotide Is Working, Like A Treat! Its Amazing!

[jonathanireland]

I got some octreotide while visiting family in Uk a few weeks ago. I did not need a script for this medicine in that pharmacy. I did my bp and pulse about an hour after the first dose. There was a tiny change in bp and pulse from sitting to standing position. (bp sitting 131/78 pulse 81) ---- (bp standing 134/87 pulse 89) I suffer from both low and high bp but my pressures are at a normal level how amazing is that.

Now all I have to do is explain to my doctor that I bought Injections in another country without a script and took it but!!! got amazing results from it I may even take a shot and make her check my vitals.

I even tryed jumping around and did bp which stayed within normal levels.

I got great energey from this med but also did experience some GI issues but they died down after about an hour and a half nothing unbareable though!

What do you guys think of these findings?

[Chaos]

Glad you had a chance to try the med. It seems like you've been anxious to do so for quite some time. Exciting that it helped you the first time. It would be interesting to see if it was as helpful over the long term since so many of us have strange reactions to meds. Good luck telling your doc about your experiment! Seems like they might not like the process, but hopefully they'll be receptive to hearing about the (apparently) good result.

[jonathanireland]

Thanks Chaos, lets hope your right they will be receptive to it.

I woke up this morning with terible GI issues so im quite unsure as to what I will do.

What a shame really.

[kjd111]

Jonathan - my daughter has been on this now for about a month. We finally talked her pediatric GI doctor into trying it as our endo (who is wonderful) didn't have a lot of experience with it. It also has helped quite a bit. Its not a cure all for her, but its made a big difference, especially post-eating. She had terrible, and i mean terrible GI troubles with it though in the beginning. We had to back off for a few days and then lower the dose quite a bit. We have finally settled on a dose of .7 twice a day - before breakfast and before dinner. For people with serious blood pooling in the splanchnic area as part of the cause of problems, this drug really does work because it shunts the blood away from the area. I hope you can find a way to continue it.

[Sarah4444]

I hope you have some success with your doctor, too. What a frustrating process this is. Let us know what happens, and good luck.

[corina]

really really glad for you jonathan!!! i've been on the short acting injections for 8 weeks and am on the LAR now. do be careful, as it can have some nasty side effects. i also think it's strange this med can be bought without prescription. in my opinion you need a doctor to help you control the med in your body. go see your doc real soon and talk it over and let him/her take control and responsibility.

enjoy your treat,

corina

[ladyt]

Hi=)

Sounds like this is a med that help some of u, great=) I know nothing about it really so can u tell me what its supposed to help whit? if u can gett it over the counter in england, what is it supposed to do? I have been on midodrin for years, its better than whit out, but still i am mostly ust laying around. So like the rest of u i am always looking for somthing that can make me better=)

best of luck too you all

[kjd111]

Octreotide is a "somatostatin analogue" as i recall and it can constrict the blood vessels in the splanchnic vascular bed. GI docs use it when someone is bleeding gastrointestinally. It also inhibits a variety of hormones, like vasoactive intestinal peptide as well as growth hormone. It can inhibit secretions in the intestine and pancreas and apparently can also act as an analgesic (thank you wikipedia!). For some with dysautonomia who have blood pooling in the abdomen, pelvis and upper thighs, it can tighten the capillaries and blood vessels in that area to help restore blood pressure. My daughter has been on a trial run of the short acting version for about two months now. Her problem is low blood pressure due to low catecholamines and no catecholamine response when standing and it has helped with the blood pooling in a terrific way. She is still weak and tired a lot, but we think that may be due to pituitary issues and what we now know is REALLY low blood volume.

[ladyt]

Thanx for the answer. I didnt understand it all I must confess. Only that ist sounds like it can be helpfull for someone whit dys. I am glad your daughter is getting some help from this meds and hope it continue so...

I migth ask my cardio about it when I have my yearly chech this mnth. He is no dys doc, but the closest I gett to one here.

[comfortzone]

It sounds pretty scary to me to be taking an injectible medication without being under a prescribing doctor that ordered it. Essentially you are injecting yourself with a medication that alters some major components of what keeps us alive of your own free will without a doctors order. Now I do know the frustrations of having doctors not see things my way ~ or having to doctor shop to find one who is skilled in the more rare maladies of humanity to get competent care... I have not though ever shopped to get a certain medication on board for my better health -- have been blessed enough to have conversation that would show me whether or not a doctor had a good ability to listen and learn -- while bringing all their expertise into the equation as we looked at options. Secondly when the med is causing unwanted side effects - your advice again is from non-physicians.... this seems like a set up for disaster. BUT with all that said -- I am truly rooting for you to find what helps you best - to get over this horrid batch of symptoms you seem to have had for some time now - and get feeling better. We do have to think outside the box so often and it gets frustrating and tiring -- Just be careful - very careful...... Because a medication does not require a prescription does not mean it is safe for a healthy human ... let alone a person with many unusual symptoms from an illness that messes with vital functions of the body.

[dianne.fraser]

Jonathan - are you ok?

Dianne

[HopeSprings]

How does one determine if they have "sphlanic pooling" ? I feel this may be an issue for me because I can FEEL IT when I get out of bed in the morning -- if I sort of squeeze around my waist -- it helps. Also, I get very dizzy after eating. Just wondering though if there is a test to prove this?

thanks

[kjd111]

Naomi - i am not sure if there is a specific test or not. I'm sure there must be but we found out because my daughter "swelled" in her abdomen, hips and upper thighs whenever she was active or upright, or pretty much all the time. Its where the blood goes when it drops from your thoracic region when you stand, and its where your blood goes after you eat. Take your bp before and after you eat, when you are starting to feel bad. Its most likely going down. If so, its usually due to splanchnic pooling. My daughter always felt terrible after eating. The octreotide has really helped that. We stumbled across the fact that eating was a trigger on a day when she forgot her lunch and she actually was less swollen and felt better - albeit hungry. The octreotide is really very, very good for those with this problem. I'd say for her, next to the dextroamphetamine, its the best med we've tried so far.

[persephone]

Just to confirm guys, there is NO WAY this drug is available in the UK without a script. I say that as someone who has been taking it for almost a year now here in the UK myself. In fact, many doctors won't prescribe it because it is prohibitively expensive. It can cost as much as $400 per week. Although we don't pay the costs for our meds a patients, our doctors must, and many have a limit on what they can spend on a patient. The long acting version of the drug alone can be over ?1,000 per 28-day shot.

In addition, it is not used at all widely here. No pharmacy would happen to stock octreotide to sell over the counter. It has to be ordered, and only after the pharmacist receives the script.

I really am not sure which pharmacy you bought it from Jonathan, but they could get into serious trouble if they really did sell it to you in the way you describe.

[persephone]

Ishould also point out that this is an extremely potent drug- it has serious side effects which can include bradycardia. Therefore anyone with a predisposition towards a neurocardiogenic or vasovagal response alongside pots needs to be extremely careful when taking octreotide. I don't know a single person who has been commenced on this drug in the UK outside of a hospital, precisely because it is such a powerful med.

If anyone has any questions about octreotide, I'd be happy to help as I have been taking it for a while now, and my cardiologist has written up the results.