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My husband started his IV remodulin in October 2025. Since leaving the hospital with the IV Remodulin, he has had this horrible leg pain. The pain is in 2 particular spots, both his calves and the right side of his thigh. The right side of his thigh is the weird pain, he explains it as like a pins and needles as if the area is asleep but continuous pins and needles that dont go away. We have tried everything, menthol 1%, 4%, 10% and even 16%. We have tried capsizin, icy hott, biofreeze, tiger… read more
I agree! What would you like to control your pain is what they should be asking my Dad?!
@A myPHteam Member I know its completely ridiculous especially with someone as old as your dad. They should want him to be pain free the last however many years he has left. At 84 I believe you should be allowed whatever pill you want no questions asked... when you survive live and live past 80 years old, Doctors should just ask you what type of pill you want...
I am having the same problem with my 84 year old Dad. They will not provide any pain meds that help him. At 84 I just want him to be comfortable whether is addicted to the pain meds or not.
We may have to to some type of pain management and then on to palliative if we can’t get this pain resolved. It breaks my heart to see him hurting.
Hoping things get better for you both. Keep me informed.
@A myPHteam Member My husband (Bryan) was prescribed Gabapentan 600 mg 3 times a day by a pain management doctor and it just wasnt helping. Once we saw a palliative care doctor, she was able to prescribe Hydrocodones 5 with 325 mg of tylenol. In mixing the tylenol it loses the potency of the drug, plus it really screws up your liver and Bryan already gets bad headaches as it is. Recently we got the dosage up'd to a 7 for the hydros and tylenol dosage, but still he deals with bad pain... my jaw almost dropped when we went to the pain management doctor and the hardest they would prescribe him was the gabapentin. One guy in the waiting room had been shot in the leg and all the pain doctor gave him was gabapentin. These doctors nowadays dont wanna give anything hard-core due to addiction issues, but the real problem is the pain needs to be handled. Bryan is dealing with enough having a pump attached to his body 24/7 with crappy side effects.. the LEAST they can do is prescribe him something to help with the pain. We have a appt with the palliative care doctor next month and its then that we will be addressing the elephant in the room. We accept that due to not catching his PAH diagnosis soon enough, it may have cut his lifespan short, but I mean at least let him live out his last years without this excruciating pain. Thank you for your response!
Yes! I began sub q Remodulin in January of this year. The leg/hip pain (deep deep pain) has been one of my biggest side effects. I have n’t experienced the pins and needles problem.
My doctor said to try Tylenol first, then Gabapentin. Neither was working for the really bad days. Now I have a prescription for a pain med for the horrible days.
Please have him speak to his doctor. At least on the worst days he needs more than over the counter meds.
Hoping it gets better! I am at 40 finally and see the doc in May. We shall see if he increases the dose.
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