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Why don't we use subcutaneous saline therapy?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Chelby, Aug 6, 2017.

  1. Chelby

    Chelby

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    So we know saline therapy offers significant benefits to POTS pts. Many Potsies, especially in America are on daily/weekly/monthly saline infusions.

    Most do so via peripheral access, a PICC line or a Port. There are pros and cons to each of these. Peripheral has the least risk of infection, but you can only do it for ~ 6 months before you blow out all your veins. You will also need a nurse to access you every time. You can only keep it in for 3 days. PICC has a high risk of infection/clot as does a Port. You cannot get a PICC wet either. A Port also needs to be placed via surgery and you must be highly aseptic when accessing (facemask, etc.). It is almost inevitable complications will arise which can be lethal (sepsis, clot, infections, port flipping over).

    However there is another option - subcutaneous hydration. It is often used in palliative care and for paeds. I am trying to figure out why it's not used for dysautonomia. The pros are anyone can access themselves, it is cheap, there is a very low chance of infection and you can keep each site for ~ week. The only con is it is slow and you may need 2 sites to get adequate fluids.

    Why not do subcut fluids? Is it less effective at increasing blood volume?
     
  2. Valentijn

    Valentijn Senior Member

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    "Slow" is putting it mildly. You'd spend most of the day hooked up to it, with even less mobility than usual.
     
    MastBCrazy likes this.
  3. Chelby

    Chelby

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    I was thinking of just hooking it up to a pump and a small backpack for it to be ambulatory. Or do 12hrs overnight. I can't see it being too impeding, seeing as you don't have to keep your arm straight. I do like the idea of the fluids been given slowly overtime as opposed to boluses were you're more likely to pee it out quickly.
     
  4. bombsh3ll

    bombsh3ll Senior Member

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    I remember reading about a couple of people who tried it and didn't find it effective. It's something I've thought about myself as although I'd happily pay privately for a PICC or port, no doctor in the UK will accept me for this. When I worked in hospitals the subcut bags never really seemed to run in. They were just hug to run in by gravity, I don't know about using a pump.

    If you do try this I'd be really interested to hear the outcome.
     
    Chelby likes this.
  5. Apple

    Apple Senior Member

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    Have you read this thread?

    http://forums.phoenixrising.me/inde...nce-of-iv-saline-in-the-uk.43328/#post-843289
     
  6. bombsh3ll

    bombsh3ll Senior Member

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    Thanks Apple,

    I did read that with interest some time ago and I emailed the lady to see where she got set up with her port. She was under the care of two really good ME specialists in England and had a good GP as well who did the referral. She had also been bedridden for years and I am not that bad yet, although my argument would be is it not better to treat before someone gets to that stage! I live in Scotland and my GP is awful. I have no specialist care either here, but I am waiting to see Prof Newton in Newcastle. If I draw a blank there then my next option is to pay to see one of the specialists in England, but I would really like the opportunity to try IV saline.

    I am planning to ask Prof Newton if I can get a trial allowed at a local hospital to go and have it given via cannula as an outpatient over several weeks to show it helps. Subcutaneous might be a compromise worth bringing up but I just don't think it would work.
     
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think because drinking salty water would be just as good and about as quick. Anything drunk has to get into the bloodstream before you can pee it out, just like subcutaneous. There is no point in doing it via a needle.
     
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  8. bombsh3ll

    bombsh3ll Senior Member

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    But the real life experience of patients says differently. Perhaps we don't fully understand the mechanisms, but theories I have come across are chemoreceptors in the oropharynx which detect the oral ingestion of fluid and signal to the brain to reduce production of ADH to compensate before the fluid even enters our stomach, incomplete absorption of oral fluid from the intestines in people who have disorders affecting motility and/or absorption, and the ability to "fool" the baroreceptors by administering fluids intravenously as we did not evolve with any means to recognize extra fluid going in that we did not drink.

    Also, you are not drinking salty water overnight whilst you are sleeping, but you can receive IV or subcut infusions overnight, and then drink in the daytime as well.
     
  9. Adamm

    Adamm

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    I don't think ive seen it work for any report I've seen.
     
    Chelby likes this.
  10. Chelby

    Chelby

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    Problem is ive been doing that and it is not helpful enough. I drink an ORS, so I can retain more. I can drink around 1.2L every few hours before I start reguritating it and will get abdominal pain and diahhrea. It is also hard to comply with drinking very large amounts of salty water everyday. The IV also offers a slow infusion instead of a bolus then peeing it out.
     
    bombsh3ll likes this.
  11. Chelby

    Chelby

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    I am wondering if this is because subcut fluids could be more prone to 3rd spacing? 3rd spacing is very common in MCAS pts, I am not sure about for about dys pts.

    Or, because we already have low blood volume, does that mean we have a lower capacity to absorb fluids? Given the ratio of blood cells remain the same @Jonathan Edwards

    Or because, since it is so slow, because an inadequate amount was infused.
     
  12. anni66

    anni66 mum to ME daughter

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    Let me know how you get on. I also live in Scotland and have an aunt who is severely affected (in bed) and from monitoring bp, pulse and dizziness manifestations definately has POTs as well as ME. GP is so dire she has been written off as " there' s nothing i can do for you " No knowledge of any nhs guidelines etc. ( Scottish ones are not quite as bad as english ones but still not good). My daughter , now 16, has had ME for 18 months following glandular fever and generally NHS has nothing at all here.
     
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  13. bombsh3ll

    bombsh3ll Senior Member

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    Yes I will let you know if I am successful in obtaining a trial of IV fluids, and also whether Prof Newton is worth seeing. Her clinic in Newcastle seems to be where those with POTS & ME in Scotland go if you are persistent enough to get a referral.
     
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  14. anni66

    anni66 mum to ME daughter

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    Good luck. Unfortunately my aunt is stuck in bed, funxtioning at around 10-15% so newcastle not viable for her.
     
  15. bombsh3ll

    bombsh3ll Senior Member

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    I'm sorry your aunt is so poorly. If there was genuinely a clinic that would be worthwhile for her to visit, ambulance transport on a stretcher bed should be able to be arranged if she were able to tolerate that. How about your daughter, do you think she would benefit from going to Newcastle?
     
  16. anni66

    anni66 mum to ME daughter

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    It maybe helpful for my daughter. We have aGP appointment tomorrow where i am raising a few things so will put this in mix. As we are not seeing progress it may become more viable. Thanks :)
     
  17. bombsh3ll

    bombsh3ll Senior Member

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    Good luck with your daughter's appointment, please let us know how you get on!
     
  18. anni66

    anni66 mum to ME daughter

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    Thanks, i will. Dhe has just turned16 and we are in the paediatric/ adult crossover limboland that NHS excels at !
     

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