Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Warnings about taking some meds when ill

Discussion in 'Other Health News and Research' started by MeSci, Oct 24, 2014.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,902
    Likes:
    12,501
    Cornwall, UK
    An item on BBC Radio 4's Inside Health programme last week really struck a chord with me. You can read the transcript or listen to the programme here. (NB there are some errors in the transcript.) The NHS Highland card info can be found here.

    In brief, it says you should temporarily stop taking ACE inhibitors, Angiotensin receptor blockers, NSAIDS, diuretics or metformin if you have an incidental illness involving fever, sweating, tremor, vomiting and/or diarrhoea, as there is a danger of kidney damage from the drugs when you have such illnesses.

    I have recently found that my first episode of severe hyponatraemia came just ten days after I went onto the maximum dose of an ACE inhibitor in 2007, and just weeks after I first started taking the drug. This was the incident dismissed by my doctor on the phone as a panic attack, and resulted in an ambulance crew similarly dismissing it and leaving me alone, fearing that I might die.

    Thanks to this dismissal, and the illness thus remaining unrecognised and no action being taken, I had another episode 3 years later (not to mention the fracture and dental damage in-between, which were probably connected). This time the hyponatraemia was eventually discovered (after initial dismissal again). And this time it was blamed on me overusing desmopressin and/or drinking too much fluid, neither of which I had done. I had been taking desmopressin without problems since 2000.

    And they put me on fluid restriction. This radio item revealed that the danger from taking these drugs at such times was due to dehydration. I was already dehydrated, and was made even more so by the 'experts' in hospital.

    I am collating all my relevant test results in preparation for presenting this info to my current doctor. It looks as though I have had a tendency to excrete excess salt all my life, and have learned that ACE inhibitors exacerbate this. So I probably need to come off them. Then maybe I can say goodbye to my frequent bouts of solute diuresis and to some of my electrolyte deficiency.

    NOT ONE DOCTOR HAS EVER WARNED ME ABOUT THIS PROBLEM OR MADE A CONNECTION BETWEEN THE DRUG AND MY NEAR-LIFE-THREATENING HYPONATRAEMIA.

    Sorry about the caps.
     
  2. liquid sky

    liquid sky Senior Member

    Messages:
    371
    Likes:
    211
    What were your symptoms when you had these episodes of severe hyponatremia? I wonder because I take ACE inhibitors also.
     
  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    Messages:
    3,763
    Likes:
    4,842
    WA, USA
    I'm sorry :(

    I don't understand why it is so hard for some docs to order a metabolic panel
     
    ahimsa and MeSci like this.
  4. Countrygirl

    Countrygirl ME is not MUS

    Messages:
    2,701
    Likes:
    13,203
    UK
    Me too! :nervous:
     
  5. alex3619

    alex3619 Senior Member

    Messages:
    12,259
    Likes:
    33,652
    Logan, Queensland, Australia
    Sigh. I have high blood pressure, a huge need for salt (probably due to over-excretion), and OI. Doctors often don't do well with anything complex. In my experience they either switch off or oversimplify, that is if they don't take a wild guess. Its a rare doctor who has the time, interest and resources to properly investigate complicated situations, especially in the short term.

    PS I also take an old ACE inhibitor.
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,902
    Likes:
    12,501
    Cornwall, UK
    A lot of them were just like my usual PEM symptoms, but others were as follows (I've bolded those that were very unusual):
    • Violent tremor, with arms flailing in front of me. I would try to bring them down but they seemed to rise up again of their own accord. It looked like Parkinson's disease.
    • Muscle cramps and spasms (sometimes painful)
    • Severe incoordination; great difficulty standing, walking, writing, picking up phone
    • Tachycardia
    • Fast respiration rate
    • Difficulty using all muscles, internal and external, including respiratory muscles and anal and urinary sphincters
    • Slurred speech
    • High, breathy voice
    • Impaired/altered sense of smell
    • Blood pressure higher than usual
    • Eyes looking damp/shiny/staring
    • Feeling very cold
    • Nausea, diarrhoea and loss of appetite
    • Generalised toothache
    • Faintness, dizziness, lightheadedness, vertigo
    • Impaired vision (possible nystagmus)
    • Tender scalp
    • Nosebleed, copious nasal secretions
    • Twitching in or around nose
    • Feeling of pressure in right eye
    • Earache
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,902
    Likes:
    12,501
    Cornwall, UK
    Well, well - looks like my hunch about the fracture was right (ish). I had suspected that it, and the dental damage, between the two episodes of severe hyponatraemia was due to associated loss of other minerals in urine along with the sodium. But it looks as though hyponatraemia itself could be the cause:

    http://www.nature.com/nrendo/journal/v8/n1/full/nrendo.2011.173.html

    http://www.ncbi.nlm.nih.gov/pubmed/21381111

    http://www.ncbi.nlm.nih.gov/pubmed/24340324

    http://www.ncbi.nlm.nih.gov/pubmed/23114899

    Do you think your recent fracture may have been due to hyponatraemia resulting from ACE inhibitor use, @alex3619?
     
  8. alex3619

    alex3619 Senior Member

    Messages:
    12,259
    Likes:
    33,652
    Logan, Queensland, Australia
    I haven't read the links yet, but I did land on my ankle with severe force at an odd ankle. Anyone would have had a fracture. I wonder though about severity of the fracture. Certainly if I get other breaks then it becomes a candidate theory. (Knock on wood .. knock, knock, knock, that was thrice the magic number - there that should keep me from jinxing myself. :p) I also want to raise issues related to hyponatraemia with my doc, but that is not for another two months or so.

    I will have a read of these if I remember. I so much stuff happening in the real world ... a quiet time for a normal person, way too busy for me.
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,902
    Likes:
    12,501
    Cornwall, UK
    I understand. I have lots to do as well, and brain fog at the moment, but am very keen to get all my test results in one place so that I can formulate a clear, concise summary for the doc. It looks as though it was known as long ago as the 1970s that at least one ACE inhibitor can cause hyponatraemia:

    http://hyper.ahajournals.org/content/1/3/274.full.pdf

    and US doctors were warned as early as 1999:

    http://www.rxmed.com/b.main/b2.phar...- (General Monographs- A)/ACE INHIBITORS.html

    so my GP should have been monitoring my blood sodium, but there are no results for that period for blood sodium in my copy of my medical records.

    The GP should certainly have had alarm bells ringing when I phoned him during the month I had started the ACE inhibitor (perindopril) with severe symptoms, instead of dismissing them as a panic attack! The paramedics whom I eventually called should also have known about this risk. They knew that I was taking it. Perhaps they assumed that my doctor (to whom they spoke) would have taken this into consideration.

    What a farce. I could have been spared a lot of suffering, damage and expense. I had never had a fracture in my life before, and used to marvel and boast about what I called my 'cast iron bones'. My fall was a minor one - a chair that I was kneeling on tipped over. I had had much worse falls than that before.

    My teeth hadn't given me any problems either, until I started that damned drug. Now I have holes where fillings were, and two chunks of enamel missing.
     
  10. alex3619

    alex3619 Senior Member

    Messages:
    12,259
    Likes:
    33,652
    Logan, Queensland, Australia
    My docs have not noticed my low sodium either, but I had the tests. I test as low normal, but this is on a high salt diet.
     
    MeSci likes this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,902
    Likes:
    12,501
    Cornwall, UK
    My results are sometimes normal. I think that they tend to be low when I am unwell, perhaps during PEM. I now realise that these are probably the times when I shouldn't take ACE inhibitors. But as PEM is so frequent in ME, I think that ACE inhibitors are unsuitable for me and maybe other people with ME.

    One major problem with tests is that it is difficult or impossible to get to the doctor for tests when you are ill! So results tend to indicate greater normality/better health than they should.

    There are two comments by doctors in my records to the effect that I looked well and strong. My test results suggested otherwise! And on the second occasion I had hardly slept the night before, with the result that I forgot to book myself in at reception, and ended up waiting for an hour while the doctor assumed that I wasn't there! I felt like absolute s**t and was struggling to think and stay focused, yet the doc reckoned I looked well and strong. :rolleyes:
     
    Countrygirl likes this.
  12. liverock

    liverock Senior Member

    Messages:
    681
    Likes:
    1,138
    UK
    I was put on Ramipril an ace inhibitor initially for slightly high BP but due to designated side effects, dry cough and loss of great clumps of hair, the doctor changed me to an Alpha Blocker drug Doxazosin.
    I always check possible side effects before starting a new RX and Im glad I did.

    Doxazosin was part of the large ALLHAT study back in 2001. This study compared 4 types of BP drugs, ACE inhibitors, calcium blockers, Alpha blockers and diuretics.

    The Doxazosin was withdrawn halfway through the study due to 25% more of those taking the drug going down with heart failure.Yikes!!

    http://content.onlinejacc.org/article.aspx?articleid=1127509


    I went back to my doctor, or rather his fresh out of University 'in training assistant,' with all the relevant ALLHAT study details and paperwork, and explained my CFS/ME caused me to have low cardiac output and the last thing I needed was a BP drug that made the heart weaker.
    He responded he wasnt going to change the drug, NICE approved it and that was that and there was no such thing as CFS/ME anyway.

    This is the sort of attitude that a lot of doctors seem to have, even when the evidence is in the front of them that they could be handing out drugs that are going to make things worse for PWC's.

    BTW Pfizer are still selling Doxazosin(Cordura in the US) as a time release drug for BP and prostate conditions so beware. Other Alpha Blocker's are probably just as unsuitable for PWC's.
     
    Last edited: Oct 26, 2014
  13. adreno

    adreno PR activist

    Messages:
    4,726
    Likes:
    9,868
    Angiotensin directly stimulates aldosterone, which in turn promotes sodium retention. So inhibiting angiotensin will make it much harder to retain sodium. If your aldosterone is already borderline low, then ACE inhibitors are a no-no.

    BTW, lots of supplements (e.g. ginger, garlic, pomegranate, grape seed, olive leaf, quercetin) inhibit angiotensin as well, so be careful.
     
    Last edited: Oct 26, 2014
  14. liverock

    liverock Senior Member

    Messages:
    681
    Likes:
    1,138
    UK
    Thanks for the heads up @adreno, but I forgot to mention I was being treated for a high BP. :bang-head:
    After nixing ARB's and ACE inhibitors I now use magnesium and potassium to lower BP which works quite well.
     
  15. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,124
    @MeSci

    I just now saw your post and haven't had a chance to read all of it but I think the following, as well as this thread contain valuable information.

    My hyponatraemia was also caused a medication called trileptal which is used for bipolar and off lable to potentiate an AD as well as help anxiety. I can't take SSNIs which are more helpful for pain.

    It does make sense that Trileptal might do this, as like lithium, it's a salt? Affects salt?

    My doctor reported my hyponatremia to the CDC and there is now a more detailed warning about this. So a lot of people must have had this same side effect.

    I was put on another medication and my sodium levels are now normal. But it's scary when I think how long this was going on before I realized something else was going.

    I can only imagine how sick you must have been with a sodium level of 115. Probably lucky to be alive. The two times I was in the hospital my level was 125 and that is the cut off point, at least in the states, where you need to be hospitalized. It took two days of IV sodium plus another day off the IV to see if my sodium level had stabilized.

    Take care.
    Barb

    ETA Since then I have noticed on the phamplets you get with your medication to alert your doctor if you have had low sodium levels. But there's so much information in these leaflets it could be easily missed.
     
    Last edited: Oct 27, 2014
    MeSci likes this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,902
    Likes:
    12,501
    Cornwall, UK
    It shouldn't be left to patients to figure out what is causing their illness! The doctor I had when I had my first hyponatraemia attack also failed to report adverse effects from another drug. When I told him about the adverse effect, he just looked at the list of known adverse effects and said that it wasn't on the list so it couldn't be the drug! :bang-head:

    I think I would be dead if I had a blood sodium of 15 - it was 115 and that was bad enough!
     
  17. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,124
    Facepalm!!

    I did it again. Yes, it should be 115 and 125. :rolleyes:

    Thanks for pointing this out.:thumbsup:

    Absolutely, it shouldn't be the patients responsibility. So frustrating as the consequences can be deadly.

    Barb
     
    MeSci likes this.
  18. jerrymcfadyen

    jerrymcfadyen Senior Member

    Messages:
    122
    Likes:
    262
    East Bend, NC USA
    Thanks for this information that of course my doctors have failed to mention. I take an ACE inhibitor, NSAID, diuretic and Metformin. My kidney function is down a bit and I really worry about the kidneys. I watched my first wife die over 9 years from kidney failure. Going now to listen to that program.
     
  19. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,436
    Likes:
    3,393
    I never took such medications and everything I will write here is based on my own experience only.

    First of all, have you ever seen a nephrologist and did a complete electrolyte panel (both serum and urine) including Anion GAP? It sounds like all your alkaline electrolytes are being mobilized (and used up) to neutralize excess acidity.

    My husband and I have been experiencing tooth decay for a few years now.

    My dentist scheduled me for a filling for a missing chunk before I run away from him. It turns out magnesium, vitamin A and K2-MK4 fixed the missing chunk :woot: K2-MK4 will dangerously worsen the right eye pressure though :meh: But magnesium alone did 80% of the remineralization:thumbsup:

    For my husband, who had 2 broken teeth since around 2007, the supplementation doesn't seem so easy since he has higher needs for potassium and sodium than me. Plus I still have to convince him to see the nephrologist :rolleyes:
    But magnesium helps him immensely with pain (his orthopedist suspected Ankylosing Spondylitis from the x-rays from his back, but DH never wanted to see a rheumatologist to confirm the diagnosis).

    My suspicion is that you need high doses of electrolyte supplementation to compensate for acidity.

    Do you have amalgams?
     
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,902
    Likes:
    12,501
    Cornwall, UK
    Are you asking me?

    I would very much like to have all serum and urine electrolytes tested, but just don't have the time or energy to even try to ask for them to be done, let alone travel the nausea-inducing journey to hospital in a volunteer car or spend almost all afternoon travelling by bus. I even had to ask for urine sodium to be tested, and the doc didn't understand the result! But the result was enough to confirm to me how I was losing sodium and getting hyponatraemia - in urine, as I had suspected.

    I intend to have the tests one day. There are a lot of things I intend to do when I can retire - late next year. I will also have a bit more money then.

    My teeth (and bones, from perception - but doctor refused to refer me for a bone mineral density scan) did improve after I increased mineral intake including sodium.

    I did have a lot of amalgam fillings as a child, and some as an adult, but some have fallen out.

    I currently have what appears to be an infection between my right ear and a tooth on the right side, so need to fix that before anything else. I'm working on it with dilute grapefruit seed extract (ear drops and mouthwash).
     

See more popular forum discussions.

Share This Page