Octreotide

[Sarah Tee]

I am getting close to being out of treatment options, but the last one on the list is octreotide.

I have mentioned octreotide to my specialist at least four times since I started seeing him, and his only comment was that it is not covered by the government subsidy here in Australia and costs a fair bit.

It depends on what dose you settle on, and whether you get the extended release, etc. etc. but it would be somewhere in the region of $AUD300 per month, which is about $US200. Not cheap as I no longer work, but I could pay for it for a few months without too much hardship. And the pharmaceutical company may grant a price reduction through its compassionate access scheme if it works for me, plus I have a small nest egg tucked away that could cover costs for a while. And who knows, if it helps me, I might even be able to do a little work.

Last week, I said “Okay, let’s try octreotide” only for him to suddenly disclose that he can’t prescribe it and doesn’t know who can. Sigh.

So now I am on the familiar chase of searching for leads, posting questions, on Australian Facebook pages, scrutinising every scrap of information I can find. So far I have gleaned that at least two people have been prescribed it and posted on Facebook to that effect about five years ago. Unfortunately neither has responded to my queries (I hope because they are out living a happy life).

My specialist has not offered to do any chasing, but I will be asking him to do so when I see him next. All he has to do is pick up the phone and say “This is Dr X. May I speak to Dr Y?”.

By the way, I realise octreotide comes with lots of risks. I am not determined to try it, but I am determined to discuss it with someone.

In other news, I am pursuing a different track; namely, seeing a rheumatologist. Two of my other doctors think that my response to steroids (during and after) could indicate an auto-immune or auto-inflammatory disorder.

[Sarah Tee]

I found this quote from Dr Robert Hoeldtke, who I believe pioneered using octreotide for POTS. (Please correct me if I am wrong. The other place I found that has investigated it, with a novel delivery via insulin pump, is the Countess of Chester Hospital, a public hospital in the UK.)

It is not very promising:

 

Primer on the Autonomic Nervous System (Third Edition), 2012

Adverse Effects of Somatostatin Analogs

Octreotide causes abdominal cramps, nausea and diarrhea in about 50% of patients, and is rarely tolerated by patients with diabetic autonomic neuropathy or underlying gastrointestinal disease.

Octreotide suppresses gallbladder emptying, and many patients develop sludge or gallstones during chronic therapy. These are generally asymptomatic but cholecystitis can occur.

Postprandial hyperglycemia develops in about 40% of patients taking octreotide chronically. We recommend administering the drug 15 minutes after the beginning of breakfast. Sufficient insulin will be secreted under this circumstances to minimize postprandial hyperglycemia.

We have never seen chronic octreotide therapy lead to an elevation in glycosylated hemoglobin concentrations or a diabetes-related complication.

Octreotide should not be given to patients who cannot tolerate it. Many patients with POTS, for example, have the irritable bowel syndrome, and octreotide worsens that. Similarly, administration of octreotide to patients with inflammatory bowel disease invariably exacerbates their symptoms. Inflammatory bowel disease is an absolute contraindication to octreotide therapy.

***

Not too cheery. But I have information from the other side. Some years ago, I had my colon removed and everything rejigged and reconnected in an arrangement called a j-pouch. Some people who have this surgery end up with terrible diarrhoea. And guess what is sometimes prescribed to treat that? Octreotide. So I know that even though I have had bowel surgery, my surgeon would okay octreotide if I needed it. So I know it’s safe to try from a bowel point of view.

I have read a few threads on octreotide from members here, which has been very helpful. Search “octreotide” in “everywhere” in the search box and you’ll find them.

[MikeO]

Here is the off label stuff i found.

Octreotide has also been used off-label for the treatment of severe, refractory diarrhea from other causes. It is used in toxicology for the treatment of prolonged recurrent hypoglycemia after sulfonylurea and possibly meglitinide overdose. It has also been used with varying degrees of success in infants with nesidioblastosis to help decrease insulin hypersecretion. Several clinical trials have demonstrated the effect of octreotide as acute treatment (abortive agent) in cluster headache, where it has been shown that administration of subcutaneous octreotide is effective when compared with placebo.[24]

Octreotide has also been investigated in people with pain from chronic pancreatitis.[25]

It has been used in the treatment of malignant bowel obstruction.[26]

Octreotide may be used in conjunction with midodrine to partially reverse peripheral vasodilation in the hepatorenal syndrome. By increasing systemic vascular resistance, these drugs reduce shunting and improve renal perfusion, prolonging survival until definitive treatment with liver transplant.[27] Similarly, octreotide can be used to treat refractory chronic hypotension.[28]

While successful treatment has been demonstrated in case reports,[29][30] larger studies have failed to demonstrate efficacy in treating chylothorax.[31]

A small study has shown[when?] that octreotide may be effective in the treatment of idiopathic intracranial hypertension.[32][33]

 

https://en.wikipedia.org/wiki/Octreotide

[Sarah Tee]

Thanks, @MikeO, I hadn’t looked at Wikipedia yet. It is certainly interesting stuff. I am amazed that it can cause diarrhoea and treat it (potentially). I wonder if that is dose dependent or some other factor.

[MikeO]

1 minute ago, Sarah Tee said:

Thanks, @MikeO, I hadn’t looked at Wikipedia yet. It is certainly interesting stuff. I am amazed that it can cause diarrhoea and treat it (potentially). I wonder if that is dose dependent or some other factor.

good question. I know this has been used in conjunction with midodrine with folks that have nOH

Octreotide, trade name Sandostatin, is a drug that mimics somatostatin, a brain hormone that controls secretion of growth hormone from the pituitary gland. Octreotide has demonstrated superior ability to raise blood pressure by constricting veins and offers similar effectiveness to midodrine for improving prolonged standing ability. Octreotide can be used in conjunction with midodrine; however, it must be injected. Potential side effects of octreotide include abdominal pain, blurred vision, constipation, depression, dizziness, fainting, increased urination, fatigue, and difficulty breathing.

https://www.multiplesystematrophy.org/about-msa/neurogenic-orthostatic-hypotension/  

[MomtoGiuliana]

There have been a lot of past discussions on the forum about this treatment that may be helpful.  

https://www.dinet.org/forums/topic/19582-my-results-with-octreotide-after-two-weeks/

https://www.dinet.org/forums/topic/18241-octreotide/\

and lots of others.  Probably you have already done some searching but just pointing out for you or anyone else interested in past discussions.

[Sarah Tee]

Thanks, @MomtoGiuliana, that’s great. Did the person you were researching it for end up trying it?

[Sarah Tee]

I notice there’s mention of it being used in the UK in the previous forum links that MomtoGiuliana kindly posted.

I wonder if that was the patients described here, or others treated by the same team:

https://www.hindawi.com/journals/crim/2015/545029/

The insulin pump method sounds as though it greatly reduces side effects by allowing a smaller, adjustable dose. Also, switching off the dose at night, when you are horizontal, is mentioned somewhere. I can’t imagine fighting for that here! I follow a blog of a woman who managed to get an insulin pump for cortisol. I think it took her two years.

https://chronicallycrappy.wordpress.com/2019/05/19/how-i-got-a-cortisol-pump/

[Sarah Tee]

I have found out from someone on the Australian Facebook support group that there is now an “oral delayed release capsule” of 20mg. He has not taken it and did not pursue the injections, and doesn’t know who or where is prescibing it.

I don’t know whether this dosage or delivery method would be suitable in dysautonomia, but it is interesting to note. A lot easier than subcutaneous injections, that’s for sure. It seems to be available worldwide and is listed at Drugs.com if you want to look it up.

***

I have also heard from a helpful person on the Australian Facebook support group. She uses octreotide occasionally when she needs to be upright for several hours at a time, e.g. attending a special event. She has POTS.

She was prescribed it by a neurologist in Melbourne who has now moved to a different area of interest and doesn’t take on new POTS patients. So that is a dead end.

[MomtoGiuliana]

23 hours ago, Sarah Tee said:

Thanks, @MomtoGiuliana, that’s great. Did the person you were researching it for end up trying it?

That's a good question.  I am not entirely sure now.  She tried so many different treatments and I am really not sure what if anything worked for her.  She went into a remission for several years but then went into a very bad flare that so far has not resolved.

One of our past moderators did use this medication and it really helped her.  She is no longer active on the forum.  But there are posts she wrote.  Here is one she responded to

https://www.dinet.org/forums/topic/28051-is-octreotide-good-for-pots/

 

[Sarah Tee]

@MomtoGiuliana, thank you for that info and link.

[Sarah Tee]

It seems that if you are in the US, the best place to look for assistance with octreotide would be to look at Dr Robert D Hoeldtke’s work. He may be retired now. You could also seek advice from collaborators on his studies or from the centres where he used to work. Or just get yourself to one of the big autonomic centres.

I notice Dr Grubb mentions it in one of his lectures, but I’m not sure whether that means he personally prescribes it.

If you are in the UK, and your specialist can’t prescribe it, ask them to try the Countess of Chester Hospital and Dr Muhammad Khan or his colleagues (listed on the case studies).

If you are in Australia, I don’t know where to look. Ask your specialist to contact other specialists and ask them, I guess. Or ask your specialist to team up with an endocrinologist (they are the ones who use it most often for other conditions).