RANT - medication unavailable

Ed1937

I have hypoglycemia (low blood sugar). I am not diabetic. For the last 2 or 3 years I have been taking Octreotide Acetate injections, and it has been working for me. About a year ago it was on back order just about everywhere, but I finally found it before I ran out. Now it is not available again, and I can't find it anywhere. I have enough for 7 more days, then I'm out. It's possible that I could die without it, but that remains to be seen. Are these companies making medications hard to find, so they can justify raising prices again? Even if people die? They are already close to unaffordable. Rant over.

terei

Have you contacted the manufacturer directly with your problem? Possibly call your state legislators. Sometimes this does work.

Denise1847

Can you ask your doctor to prescribe an alternative? This is outrageous! I wonder if it is like Ozempic, which people are now using to lose weight when they don't have diabetes.

M1

Ed, here's a link to a website my daughter uses all the time (American Society of hospital pharmacists). Posting from this week, it looks like the major issue is at least two previous manufacturers have discontinued. We also have a family member affected. Sounds like it should ease by the end of the month....but still.

https://www.ashp.org/drug-shortages/current-shortages/drug-shortage-detail.aspx?id=229&loginreturnUrl=SSOCheckOnly

Beachfan

Ed,

My daughter had a similar rant not long ago over epi-pens for allergies. My grandson has been hospitalized twice, ctitically, for a reaction to peanuts. He has a bracelet designating “fatal peanut allergy”. The pens were almost impossible to get and the price had skyrocketed. And yet, Narcan, for opioid overdose treatment was being advertised as free and easily accessible all over the country. I’m not sure how the issue was resolved, but I just noticed that the pen I carry for him has expired. Here we go again. Good luck resolving your medication issue.

Iris L.

A Canadian pharmacy?

Ed1937

Does not seem to be available in Canada either. I called several pharmacies there with no luck. Back ordered.

I contacted the manufacturer. No luck again.

Apparently there is only one alternative that I can use. That was the first thing I was prescribed, and I had extremely bad pains in my abdomen from side effects. When I went on the injections, no problem.

I guess the only thing I can do is eat a lot of carbs frequently, and hope for the best. The projected date for warehouses to get it is July 28, but that's just an estimate.

I'll try to get in to see the doc on Monday, but I don't have an appointment.

harshedbuzz

There are shortages of all manner of medications right now. I am sorry for those being impacted personally. I have a friend whose mom needs a chemotherapy medication for cancer and can't reliably obtain it. It's a nightmare.

@Beachfan Do the production and availability of Narcan somehow impact the availability of Epi-Pens in either the brand name or generic versions? Do they have common precursors or share a manufacturing facility? There's a real need for both medications.

HB

eaglemom

Rant away Ed. This serious, very serious. Ask your PCP, or whomever your going to see for samples. Sometimes physicians do have quite a bit left by the drug reps. Then ask them what your supposed to do. Maybe they'll have some solution you've not thought of.

This is the type of stuff that keeps me awake at night. I just can't wrap my head around the reasoning that 'oh I need to lose weight, I'll just take this drug that's meant for something entirely something else. But I'll look good.....' Nope, I just don't get it.

eagle

M1

fwiw: octreotide is not a weight loss drug and is not in any way related to the current things that are going on with Ozempic and Mounjaro. Completely different kettle of fish.

SDianeL

Oh my. That's terrible! One problem is that much of the ingredients and manufacturing for drugs are done in other countries. They have manufacturing problems and supply chain issues. I fear it's going to get worse. Coupled with the fact that drug companies want to make huge profits so they switch to more lucrative drugs. I have bouts of low blood sugar and found that eating too many carbs makes it worse. According to the Hypoglycemia Support Foundation (HSF), the main foods on this diet are vegetables, lean meat, non-meat protein, nuts, dairy, and whole grains. Meanwhile, the hypoglycemia diet eliminates tobacco, alcohol, caffeine, white flour, simple carbs, diet soda, and most sugars. I also do not do well with the "non meat protein" listed above. I've found that a balance of protein and whole grains work best for me. Please keep us posted.

Ed1937

Doc will be in Monday. I'm sure he will squeeze me in. I talked to the pharmacist today, and told him that if I could take an injection every third day, I would have enough to last till the 28th, which is when it is expected to be in. I'm on a low dose, and I asked him if he would consider that if it were him. He said he would (although he couldn't recommend anything for me), and there is a long half life to it. Maybe I'll be OK. I didn't take an injection today, and I'll skip tomorrow to see what happens. Fingers crossed.

Jgirl57

I sure hate that you have to play the guessing game with your medication. Please please be careful. We all love you. Hopefully your doctor will be able to help on Monday

White Crane

Praying for you Ed.

eaglemom

Make sure you report back after your appointment tomorrow Ed. Clearly you've got a bunch of people very concerned about you.

eagle

Jo C.

Good morning Ed, what a confounding, maddening and scary situation; I am so sorry this is happening. I did notice that Avet Pharmaceuticals actually has octreotide stock available in various strengths per the link M1 provided. The link is dated, July 5, 2023.

Have you been able to check that out by contacting the Avet drug company if your local pharmacies in a broad area do not have it in stock? Avet is located in New Jersey and their contact phone number is:

 (866) 901-1230

They may be able to tell you where the drug is currently stocked. If Aveit has it, or if they can tell you where in the U.S. it is available and if it is not near you or even if it is out of state, perhaps your local pharmacy or physician could order and obtain it for you as in all probability the med would not be provided directly to a patient. If it is available at a far distance, one could pay for overnight mail to have it sent.

Please do keep us Posted on how this is going. We all care very much and want the best that can be for you.

J.

Joydean

Mr Ed please be careful! Praying the doctor will be able to help you!! 🙏

Jo C.

P.S. I did call that phone number on this Sunday to ensure accuracy, and it is indeed a direct line to Avet.

J.

ButterflyWings

Mayor Ed. Praying you get your meds soon. That stinks. One of our medical pros actually said maybe the recent backlog in DH's duo nebs was more a pharma strategy to drive up prices than a true supply-chain issue. I would not doubt that for a minute. Big pharma has not shown itself to be anything but greedy.

Ed1937

Thanks everyone. I called that number yesterday. They told me they did not show a shortage! ??? But they do not sell to the public. No info on where to get it. I'll see my doctor tomorrow. Maybe he can find something for me. Thanks again!

Ed1937

OK. I missed taking the injection yesterday and the day before. I took one today, and just got back from seeing the doc a while ago. He's not having any luck getting it either, but he's OK with me taking one every third day if it doesn't cause problems. No problem so far. If it still is not available when I run out, he said I could go to the hospital for injections if needed. So I feel pretty comfortable with the near future. Thanks everyone for your support and caring.

M1

inconvenient Ed but at least it's a plan. Let's hope the every 3 days will hold you.

Ed1937

I got some good news tonight. The pharmacy called to see if I was open to using a different manufacturer. The one I have been using came in pre filled syringes. The option is to go with one I will have to fill the syringes myself, but they said they could get it. That's OK, I can do that. Price jumped from $276.00 to $345.00, but at least I can get it after they contact the doctor for minor changes in the prescription. Until I actually have the injections in my hand, I'll keep with an injection every three days. Just like when I sold a house. I didn't consider it sold until I had the check in hand.

Quilting brings calm

I’m glad you found a supply! If the medication you have to fill yourself jumped in price, I wonder what the prefilled price would be?

eaglemom

It's nice to know the pharmacy is work for you Ed. I like the comparison to purchasing a house, it fits in this situation. The price increase stinks, but that is out of your control.

eagle

Ed1937

"I wonder what the prefilled price would be?" I just found the same medication I have been taking on Amazon. I take 50 MCG, and I paid $276 for 60 pre filled syringes. Amazon has the same brand, but at 100 MCG for $402 for 30 pre filled syringes. 50 MCG not available. Hard to get? Too bad. We'll just drastically increase the price.

Jo C.

Hurray! And a big relief even though it has a small inconvenience attached and a $69 increase in costs. Overall, considering the issues if things had gone the wrong way, it is a significant positive until your usual med is once again back in stock.

I am really glad you did not have to go without or take risks likely to have made a difference in your health over time. Interesting in that the hospitals can provide the drug, so there is a sort of safety net.

Take good care of you Mr. Ed, and may your usual prescription med turn up soon. So glad it worked out and you will be okay. As the old saying goes from SNL, "It's always something!"

J.