Christy_D Posted March 27, 2012 Report Share Posted March 27, 2012 My son started IV Saline infusions today. A nurse came to our house today with all the supplies to do it for 5 days. These are going to be done at home, so I was trained on how to change the bags, etc...My question to those that benefit from this is, how long before he should feel any benefit? We are leaving in 5 days to go see the mast cell doctor in South Carolina, so is 5 treatments enough? The doctor wanted to do it for 2 to 3 weeks to determine if there was any benefit. We will continue on it when we get back if there is benefit.Christy Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted March 28, 2012 Report Share Posted March 28, 2012 Christy, In my experience, the effects are pretty quick. I think it depends on how low you are to start with though. The first time I had it I felt better right away. I literally went from being laid out on the floor so weak that I was barely able to talk and unable to move even my arms, to being able to walk around and function (after 1 1/2 bags of saline). Last week when I had it, it wasn't that drastic a change for me but it still helped. The biggest thing I noticed this time was that I had a quieter sleep (didn't wake with extreme tachy) and when I woke up, I was able to get out of bed within 5 minutes! It usually takes me at least an hour before I can get out of bed (feels like my body is waking out of hibernation). Everyone in my house was literally shocked to see me up and around. I hope the saline helps to give your son a boost to handle the journey and all goes well with the new doctor. Quote Link to comment Share on other sites More sharing options...
Rachel Posted March 29, 2012 Report Share Posted March 29, 2012 I start feeling better about halfway through a bag of saline. The positive effects last for about 48 hours. After that most of the fluid is flushed out of my body. The helpful effects are pretty quick, but they don't last long term.Rachel Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 29, 2012 Author Report Share Posted March 29, 2012 Well so far not much improvement. This is day 2 and not much difference. I'm guessing IV Saline isn't going to be a treatment plan for him. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 29, 2012 Report Share Posted March 29, 2012 Dramatic effects for me within twenty minutes. Feel almost normal for the first day with residual effects lasting 48 hours. Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted March 29, 2012 Report Share Posted March 29, 2012 I am currently on IV saline. It helped me right away. I began to feel the affects within an hr of having saline. I get 2L with lactated ringers once a week. The only downside is it isn't long lasting about 48hrs. Also if he is going to do it long-term considering get a PORT put in. I had one put in about 3 weeks ago. Quote Link to comment Share on other sites More sharing options...
forevertired Posted March 30, 2012 Report Share Posted March 30, 2012 If I may ask, ChristyD, POTSGirl, ramakentesh, rachel, and allaboutpeace:How did you get your doctor to prescribe Saline IV as a treatment? What made them suggest it as a treatment (for example they thought it would help with low blood pressure)? Does your insurance cover it? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 30, 2012 Author Report Share Posted March 30, 2012 Forevertired,I asked the doctor to try it. My son is not able to get the amount of fluids needed each day for POTS because of his nausea. His doctor thought this was a reasonable treatment to try. Our insurance does cover it and it is being done at home, so I don't have to take him to the hospital everyday.Unfortunately it hasn't made a difference for him. The doctor set it up to be done for 5 days to see what effect it had. He has done it for 3 days with minimal improvement. I don't think we will be continuing it after the 5th day. Our doctor is very open minded to any suggestions I make or want to try. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted March 30, 2012 Report Share Posted March 30, 2012 Forevertired, I had to go the ER (infection from biopsy, crazy nighttime rythym issues and high tachy ) last week because both my docs were on vacation. I brought a copy of the following article with me and flipped to the page about benefits of IV saline for POTS patients. The ER doc wasn't familiar with POTS and immediately agreed to it. I also mentioned the point about it being used for 'acute heart rate control'. I think he was happy to be able to do something for me. I plan to share this with my internist as well when I see him.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/pdf/ipej060084-00.pdf Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted March 30, 2012 Report Share Posted March 30, 2012 Hey. My doc is willing to try whatever will help me, so he let me do it. And the reason i do it is it helps with my tachycardia and fatigue. Quote Link to comment Share on other sites More sharing options...
Rachel Posted April 2, 2012 Report Share Posted April 2, 2012 Forevertired,I was first prescribed IV saline by Beverly, Dr. Grubb's nurse practitioner. I asked her if that would be something I could try. My health had gotten a lot worse, and I was bedridden 21-23 hours a day. The weakness, fatigue, and brain fog were intense. Even while lying down I was often on the verge of fainting. My gastroparesis flared up, and I could no longer drink enough fluids. It was a scary time, and my health was in a very fragile state. We were trying anything we could to help my body recover.My initial prescription from Beverly was for IV fluids once a week. My local cardiologist then got me set up with in-home nursing and IV fluids. At that time she upped the prescription to 3 times a week. The fluids were one of the biggest helps for me as I recovered from my "crash" as I call it. My cardiologist had a few other POTS patients who had success with IV fluids, and I think that helped. Since she knew it was beneficial, she was very willing to do IV fluids long term with me.I have Medicare, and it covered my in-home nursing and IV fluids completely, which was a huge blessing. IV fluids and home nursing are expensive. I hope you are able to get the help and insurance coverage you need.Rachel Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 2, 2012 Author Report Share Posted April 2, 2012 My son finished his five day IV Saline infusion treatment. While he had minimal improvement on day 1 and 2, on day 3 thru 5 he broke out of the cycle of 20+ hours a day in bed. So, I guess it really ended up being beneficial after all. Perhaps it will be something we do when he gets in that really bad severe symptomatic cycle.Christy Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 2, 2012 Report Share Posted April 2, 2012 Bags of saline cost around $4 per litre so administration should be the only cost. I asked my doc to give it to me because I knew it would help more acutely than any medication and i was correct. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted April 3, 2012 Report Share Posted April 3, 2012 The Peter Rowe video posted here recently agreed it is very affective in most people. On my tilt test my HR went from lying 85-105 ( doctor said 87-90 ) to over 140, the nurse said as high as 156 and low as 80 ( or 86? ) Anyhow, after the test the doctor left and nurse said bag of IV fluid before I left. When I stood up I was suprised as HR was about 115. I pointed it out and asked if I could stand there which she let me and it was lower and more level by far. Before IV saline I was very positive on the tilt. After IV sailine it would be a negative test. I still felt dizzy, but felt better after leaving. Quote Link to comment Share on other sites More sharing options...
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