jodielynn Posted January 12, 2011 Report Share Posted January 12, 2011 Hi, I have been on just about everything,with my autonomic dysfunction. I currently passout three or more times a week,so the thought on this med is that it well act as a vasorestrictor. My insurance company well not cover it yet. I just want to know if anyone has tried this med? And had any luck. Quote Link to comment Share on other sites More sharing options...
jonathanireland Posted January 12, 2011 Report Share Posted January 12, 2011 hey jodie,I can only share with you what I have read about epogen in the past.Epogen is a Suncutaneous Injection (injected into the fatty layer of tissue under the skin). It helps the body produce more Red Blood Cells which in turn causes Volume Expansion. So for us with POTS one would think this is the magical cure, Unfortunatly its not. Epogen pas the potencial to cause some very serious side effects, from anemia to even death. Now Im not trying to put you off this drug I am simply giving passing on my knoldge of this drug whether you are going to trial it is your own decision. there is some contraversy about this drug I think there always has been. there are definately some potsies on here who have used this drug I for one have not so I can not given you details of any experience I have had with this. Just some thing to think about, OCTREOTIDE is a potent vasoconstrictor which is given through Subcutaneous Injection as with the Epogen, But the side effects are not as dangerous as with epogen and its very good for someone who experiences pooling in the abdomen, it is known to raise blood pressure and supress a tachy pulse. I have tryed this drug and found it great, I would suggest starting it at half the min dose wich .25 micrograms the min being 0.50 micorgrams stricktly because there are some gastrointestinal side effects that do disappear after a few days to weeks. Hope you found this some help.All the best. xJonathan, Quote Link to comment Share on other sites More sharing options...
persephone Posted January 12, 2011 Report Share Posted January 12, 2011 Epogen is a fantastic treatment for autonomic dysfunction, especially in people who don't respond well to other first line drugs like midodrine and fludrocortisone.I took it successfully for 3 years but no one adjusted my dose in that time, which caused the drug to lose efficacy. It is subcutaneous and involves self-injecting which is easy to get used t. Blair Grubb has used it with success in patients, but from what I can gather, insurance in the US can cause problems because it's quite expensive.The drug works by effectively thickening the blood, thus raising bp. It can help hugely with cognitive function. If labile bp is a big problem for you, Epogen is the way forward. Every drug will list dangerous side effects- especially when treating cardiac and autonomic symptoms.(ANY drug taken in overdose can do damage or kill you!). You did absolutely the right thing by attempting to find others who have taken the treatment. Epo doesn't cause anaemia. It is used to TREAT anaemia by stimulating the production of red blood cells. Good luck! Quote Link to comment Share on other sites More sharing options...
jodielynn Posted January 12, 2011 Author Report Share Posted January 12, 2011 Thank you guys for getting back to me.. I hope to try it soon,just have to keep fighting the insurance company. I have tried octreotide,it didn't work for me I still passed out four to five times a week on it,and got no warnings ahead of time.. it also caused really bad GI problems in me. But I have heard octreotide is a great drug for some people. The funny thing is my insurance covered the octreotide,but not the epogen... Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 12, 2011 Report Share Posted January 12, 2011 Hi Jodielynn!I have never thought about using epogen but can see where it might help. I did ask my cardiologist about receiving intermittent blood transfusions but he advised against it. The reason you have trouble with your insurance paying for epogen is b/c it is extremely expensive (~$2000/shot at my hospital). However, if a doctor declares it medically necessary and you have failed on less expensive treatments...hang in there b/c insurance may come around as they may not have a choice. The only thing that I would be concerned about (& this is only for myself) would be too thick blood. I already have chest pain and family history of MI. Also, my BP goes up when I have OI so I suppose I wouldn't be a candidate for it anyway.I certainly hope you get it if you need it and let us know how it goes! Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 12, 2011 Report Share Posted January 12, 2011 Oh yea I forgot to add...I also asked my doc about a volume expander such as albumin but he advised against it. He thinks that the medical community can sometimes "mess up" us dysautonomics so we must be very careful in what we do partake in...LOL! Quote Link to comment Share on other sites More sharing options...
jonathanireland Posted January 12, 2011 Report Share Posted January 12, 2011 Epogen does help the body create more red blood cells it does not make the volume on the cell bigger that makes no sense really. epogen does cause serious side effects more than some of the other regular drugs used and yes death in certain patients does happen all this information as been taken straight from the epogen.com website it outlines the effects of this drug and also the mechinism of action.Jodie I wish u the very best in your decision and good luck my dear. x Quote Link to comment Share on other sites More sharing options...
jonathanireland Posted January 12, 2011 Report Share Posted January 12, 2011 www.epogen.com Quote***** EPOGEN® stimulates the bone marrow to make more red blood cells and lessens the need for red blood cell transfusions. Having more red blood cells raises the hemoglobin level. Quote Link to comment Share on other sites More sharing options...
jodielynn Posted January 13, 2011 Author Report Share Posted January 13, 2011 Thank you everyone for your input. I talked to dr grubb this evening and he still feels epogen is my best bet at this point. I well continue to fight my insurance company. I have a son who is five and a son who is two,I owe it to my boys to try everthing I can. I pass out too frequently not to give it a shot... Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 13, 2011 Report Share Posted January 13, 2011 Hi Jodielynn,I did try Epogen about 3 years ago. It wasn't beneficial for me, but I know that it has been a huge help to some others here. You could try doing a search for Epogen and Procrit (another name for the same drug). It has been discussed many times in the past, and you may find more information that way.Persephone gave a good explanation of what Epogen does. She is correct in stating that Epogen will not cause anemia. It is used to treat anemia by helping your body to create more red blood cells. Anemia FAQ's: "Anemia develops when there are not enough healthy red blood cells in the body. This condition can be detected when there is a below-normal level of hemoglobin in the blood."My insurance was just the opposite of yours. They covered Epogen without a problem at all, but they would not cover Octreotide for me. I hope that you can get the coverage you need to try Epogen, and I hope that it is beneficial for you.Rachel Quote Link to comment Share on other sites More sharing options...
jodielynn Posted January 13, 2011 Author Report Share Posted January 13, 2011 Thank you Rachel,for your input. Sorry too hear about your battle with octroetide. Do you mind if I ask, are you currently taking anything? Is it working for you? My husband and I are thinking of buying the first couple of months of epogen too see if I get any results. I am not to hopeful because nothing seems to work,I just want to feel a little better so the days can be a little easier. Or if I can find a med.that well give me a little warning to when I am going to pass out,so I can sit down before I go down hard. Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 15, 2011 Report Share Posted January 15, 2011 Hi Jodielynn,There are several medications and supplements that I am currently taking. I suppose it is all relative to say whether or not they are working for me. They all help a little bit, but I am by no means even close to a normal level of functioning. I have to be in bed 18 hours a day, and in my recliner for the majority of the 6 hours that I am "up." However, this is an improvement from a few months ago when I had a bad crash and was all but completely bed bound. We tweaked my meds and treatment, and I am feeling so much better than I was this past fall. I can rarely leave the apartment, even with help, but I am so glad to be able to spend some time with my family every day again.My current treatment is:Midodrine - to raise my blood pressureMiralax - for chronic constipation/bowel dysmotilityOmeprazole - for reflux due to gastroparesisSeasonale - continuous bcp to even out hormones. This helps to prevent monthly crashes.Amitriptyline - for migraines and sensory overload Claritin - for allergiesMelatonin - helps me sleepCerefolin NAC - helps with brain fogB2 - for mitochondrial diseaseCoQ10 - for mitochondrial diseaseIV Saline - to raise blood volume and get sufficient fluids in (because of gastroparesis I can't drink enough fluids anymore)I also take a multivitamin, magnesium (for migraines and muscle cramps), calcium, and use peppermint tea and/or ginger root capsules for nausea as needed. I wear compression to help prevent blood from pooling.Rachel Quote Link to comment Share on other sites More sharing options...
jodielynn Posted January 15, 2011 Author Report Share Posted January 15, 2011 Thank you Rachel for your information. Sorry too hear you are on so many medications,and still having difficulty. I have come to realize one of the best treatments I can give myself is to take one day at a time. I am also thankful to have my family with me... Quote Link to comment Share on other sites More sharing options...
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