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Remodulin

USER REVIEWS

Comment from: lgarnett, 35-44 on Treatment for 1-2 years Published: August 12

Our daughter has been on this drug since August 2007. It literally has lengthened her life. When her PAH was diagnosed, we were told that she would likely die within 6-10 months. She has used it with a central line and infusion pump. We have used two different pumps with very little trouble at all in the mixing or administration of the drug.

Comment from: cari, 35-44 on Treatment for 2-5 years (Patient) Published: November 16

Besides the side effects, this med has worked for me wonderfully

Comment from: geno, 45-54 Female on Treatment for 1-2 years (Patient) Published: October 25

I've been on remodulin for 1 1/2 yrs site pain is painful up to 2 wks ,nausia at times. pain in legs & hands.It has lowered right venticle pressure from 110 down to 61,so ikeep doing it and try to stay positive! Good luck to all .Geno

Related Reading: remodulin

Comment from: 55-64 on Treatment for 2-5 years (Patient) Published: August 04

Remodulin saved my life. I began in 2007 and have had few side effects--(just a little diarrhea and leg pain.) Once you get used to the process, it is simple to use and even easier once you are stable and can use the smaller pump. It is wonderful to be able to braathe again!

Related Reading: remodulin | diarrhea

Comment from: ricashea, 45-54 (Patient) Published: June 19

My main complaint about this drug is that I have lots of pain in my feet, legs, and hands. It seems to be getting worse as I increase the dosage. At times it's almost intolerable. I am on gabbypentin an a stong pain med. At times that doesn't even help that much.

Comment from: [email protected], 55-64 Female on Treatment for 2-5 years Published: August 18

On the 19June2009 my wife of 29 years and 6 months passed.When we viewed her in the E.R. we saw that her cronos pump showed that out of a 48 hour supply of her med,20ml,that in a 4.5 hour time since refill,the cronos infusion pump showed that 5ml had been dispensed.That is a near 300% dosage in my math.I have not received to my way of thinking a proper answer as to what happened.Now that I have read the overdose symptoms I am now convinced she suffered and died because of an overdose.I would be wary of the Cronos pump and its reliability. I am also suspect of the MDs involved. Gene Bono widower of Marie

Comment from: 19-24 on Treatment for 2-5 years (Patient) Published: June 13

In the begining it is very painful, after having this medication for other three years i highly suggest using your hip the pain decreases a lot. Hope it helps (:

Comment from: 45-54 on Treatment for 1-6 months Published: January 10

It's January 10th, the 6th year of my father's death from the careless use of the drug from the doctor who prescribed it to him and the nurses who admininstered it. Dr. Zawicki, prescribed this medication for my dad but left the pick line in his arm to long instead of moving it to just under the skin of his stomach, where he would have less of a chance getting sepsis. My dad collapsed January 1, 2008 and was rushed to St.Lukes hospital. He died on January 10th after 10 days of agonizing pain for both him and my family. I pray to god that the training and the use of the drug has improved, so that nobody has to go through the pain that we did because of not being treated properly and safely.

Related Reading: sepsis

Comment from: 45-54 on Treatment for 1-6 months Published: January 10

I send this email every January 10th because that is the day that my father passed away from an infection called sepsis that he developed by the method that they used to administer the drug Remodulin because he had developed pulmonary arterial hypertension. He first was administered this drug in November of 2007 and spent a month in the hospital. They used the intravenous IV infusion method in which they put a catheter in his arm. The doctor had told us that this was temporary and that they would be changing the method to the subcutaneous infusion method in which they were going insert a small catheter under the skin in his abdomen and the reason for this was because doctor Zawicki had told us that they do not like to leave it in the arm to long because there is more of a risk for infection. We kept asking when this procedure will be changed because my dad was doing really well with it and had finally started getting the color back in his face and was walking down the halls and was not losing his breath. We were thrilled that he was doing so well. Dr. Zawicki said she wanted to wait awhile because he was doing so well. December came and he still was in the hospital with the IV in his arm. We asked if he could get out for Christmas and then we would bring him back and they said that would be o.k. and we had a nurse come to the house to show us how to mix the remodulin and change the IV and then in January they would be changing to the subcutaneous infusion method. My dad collapsed on January 1st and we called the ambulance to take my dad back to the hospital because he was feeling very week and he was running a temperature. When my father arrived at the emergency room the nurses had very little knowledge of remodulin and what you do with it. My mother and I had a card that we were given by the nurse that came to the house who specialized in it and we explained it to the nurses in the emergency room. As the days went on my dad just kept getting worse so do

Comment from: michelle, 35-44 on Treatment for 2-5 years (Patient) Published: April 30

I'm a 42yr old female...Im using 90ng of Remodulin 24/7 Intravenously with Flolan diluent (to lower my risk of bacterial infection) instead of sodium chloride. When I was first diagnosed my pressures were 98...an yes that's not a typo. This medication has saved my life! 2yrs ago Jan I was on vacation to see my mom in Florida...I began to have sever chest pain an shortness of breath...We to the ER they said I was in heart faliure 3 days later I was transferred to another hospital who handled PAH...my problems are with finding a good doctor this medication lowered my pressures to low 80. The side effects are tough they do subside a bit...leg pain, tmj, an headaches are my big issues. I do take pain medication w/o it I couldn't take this medication. Tried sidnafild (Viagra) an Revatio on top of IV both were awful. My pressures are slowing going up because the Doctor is scared to allow me to increase my Remodulin even though we know it works, they have suggested an oral Opsumit or Lateares..(both spelt wrg) I'm concerned about more side effects anyone on my cocktail of drugs who would be willing to share your experiences with this medication? If anyone needs or wants information I'm an open book an will gladly share my experiences. Plz feel free to contact me.

Related Reading: remodulin | flolan | chest pain

Comment from: Glowfase, 35-44 on Treatment for 6 months - 1 year (Patient) Published: February 17

I have been using remodeling since July.I admit the site pain is uncomfortable but I am really excited about how I feel. I feel healty again I hope I can began the pill form has anyone ever done that?

Comment from: jerry, 35-44 Female on Treatment for 6 months - 1 year Published: March 17

Remodulin has caused me heart trouble, arythmia. my cardiologist has taken me off it. avoid. aweful pain in the face, legs...unbearable.

Comment from: cupcake, 55-64 on Treatment for 1-6 months (Patient) Published: September 02

The site pain is so terrible. Usually after 6 days I need to chane the site or go out of my mind. I don't have any problem with anything else, just the site pain.

Comment from: 35-44 on Treatment for 1-6 months Published: January 07

My father passed away 3 years ago because instead of doing the continuous intravenous infusion they administered it through a pick line that was in his arm. They left that pick line in to long instead of doing it the right way and he ended up getting an infection called sepsis and it killed him. As you can probably tell I am very bitter about this procedure and I think they need to do something about how doctors handle this drug and that everyone needs to be made aware of how dangerous this drug can be. My dad just turned 70 years old and 1 year before he died he was still climbing tree's for deer hunting so he was a very active man.

Related Reading: sepsis

Comment from: carla, 55-64 on Treatment for 2-5 years (Patient) Published: September 29

I have scleroderma and have a bit of diffectly using my fingers as they are stiff , so using all syringes and medications is sometimes diffcult for me. I am a widow so I have to mix my own medication. Luckly I have a son who lives 25 miles away who can help me with my dressing change. The thing I have a problem with is keeping my dressing dry when showering. I miss swimming too. I am grateful ths medication is keeping me alive so I should not complain about anything.! Thank you to all reseachers who invented this wonder drug. !!

Related Reading: scleroderma

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Medical Editor: John P. Cunha, DO, FACOEP

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