Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Oxypentifylline (Trental) contains PEG

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Mel9, Aug 6, 2018.

  1. Mel9

    Mel9 Senior Member

    Messages:
    708
    Likes:
    1,767
    NSW Australia
    I started taking Trental 400 yesterday and it seems to be overcoming many symptoms (it enhances blood flow through capillaries)

    But, it has also caused terrible nausea and bowel pain. I looked up the complete list of ingredients online and found Polyethyleneglycol (PEG)

    I am allergic to PEG. Has anyone else had problems taking Trental? Can you get it without PEG (or any other glycols)?
     
  2. Shoshana

    Shoshana Northern USA

    Messages:
    3,499
    Likes:
    9,799
    Northern USA
    Oh my! I don't know anything about that, @Mel9 but I am sorry that happened.
    I am thinking of you, and hope you get a good answer.

    Would the pharmacist or chemist have good info on that, for you and for the practitioner who prescribed it?
     
  3. Mel9

    Mel9 Senior Member

    Messages:
    708
    Likes:
    1,767
    NSW Australia
    Thanks @Shoshana. I am now in crippling PEM type crash too. (After feeling so good for a 4 hour window of energy yesterday)
     
  4. kangaSue

    kangaSue Senior Member

    Messages:
    1,093
    Likes:
    1,289
    Brisbane, Australia
    I have a problem with PEG too, and propylene glycol (PG). Also add any glycol, glycerol, glycerine to that list too. PEG and PG is rife as an ingredient in so many products, some foodstuffs included. I had to change all my skin care products, soap, shampoo, toothpaste because of containing either one.

    Trental is one of the many meds that has PEG hidden away under the ingredient name of macrogol. It's the only brand of oxpentifylline available in Oz though I'm afraid. Cilostazol might be an alternative in the PDE inhibitor family that's PEG free.

    There's a similarity in action between these and nitrates too and I have a microvascular bowel blood flow problem for which I take nicorandil.
     
  5. Mel9

    Mel9 Senior Member

    Messages:
    708
    Likes:
    1,767
    NSW Australia
    Today I spent a few hours checking my meds and four of them have hidden PEG

    which might explain some of my worst symptoms.

    I will try to clear my system of PEG in the next few days

    Then start again with safer meds!
     
  6. kangaSue

    kangaSue Senior Member

    Messages:
    1,093
    Likes:
    1,289
    Brisbane, Australia
    @Mel9 Check eye drops too if you happen to use them. I only found I had a PEG problem when I had to to change the one I was using and a long standing vomiting after eating problem stopped immediately with changing to eye drops without PEG or PG.
     
    Shoshana and Mel9 like this.
  7. Mel9

    Mel9 Senior Member

    Messages:
    708
    Likes:
    1,767
    NSW Australia

    Thanks, that is amazing! @kangaSue

    I first woke up to my PG/PEG allergies when trying to get rid of a small cold sore on my lip many years before I got sick.

    The cold sore cream contained PG and I ended up with half of my face covered in a painful sore. That taught me to investigate creams and lotions: most of which I can’t use.

    But I didn’t realise these glycols are also used in tablets to make them nice and smooth, easy to swallow. After 3 days free of PG/PEG the constant queasiness/ flu feeling seems to have gone.

    I wonder how many patients might have this sort of allergy?
     
    Shoshana likes this.
  8. Mel9

    Mel9 Senior Member

    Messages:
    708
    Likes:
    1,767
    NSW Australia

    My doctor has given me the phone number for a compounding pharmacy that might prepare Trental without PEG or PG.
     
    Shoshana likes this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,107
    Likes:
    35,376
    USA
    Is PEG or PG the same ingredient that is in most Prep Drinks for a colonoscopy? I am not sure if I am confusing myself with another ingredient.

    I am so glad that you found a compounding pharmacy to get the med(s) you need @Mel9 without this ingredient. I have had to do that many times in the past to avoid FD&C food dyes and other types of dyes that I am allergic to.
     
    Mel9 likes this.
  10. Mel9

    Mel9 Senior Member

    Messages:
    708
    Likes:
    1,767
    NSW Australia
    Yes they contain PEG . I actually posted about this recently but was too dopey to check on my own more recent meds even though I have been developing unbearably itchy rashes on my arms and legs lately.

    but I ‘knew’ the rashes couldn’t be from my allergy because the only soap or lotions I use are free of glycols.

    I didn’t think it could be coming from my tablets!

    It is really difficult to find PEG/PG free products nowadays. I have a cupboard full of products I bought and then found I couldn’t use.
     
    Gingergrrl likes this.
  11. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,107
    Likes:
    35,376
    USA
    Thanks for confirming and that is what I thought. I am certain that I've had products with PEG or PG in the past (just b/c it seems so unlikely that I haven't since it is in everything). But I have never taken a large amount of it like would be required for the Prep drink in a colonoscopy, in addition to the sheer amount of fluid you have to drink which I already know is dangerous for me b/c of third spacing and edema risks. And this is separate from the anesthesia risks (which I am starting to get info on but need more). I just do not see how I would ever survive the procedure!

    I am so glad that you were able to figure that out! I asked my pharmacy to give me the prescribing info for each of my meds (back in 2015 and for any new med since then) and when I find one that I know does not have any ingredients I am allergic to, then they add to their computer that I can only get that particular manufacturer and no substitutions. And if it cannot be done, then I get it compounded. So far, I have not had any problems with lotions or shampoos but I do buy products that are "fragrance free" and "dye free".
     
    Mel9 likes this.
  12. Mel9

    Mel9 Senior Member

    Messages:
    708
    Likes:
    1,767
    NSW Australia
    Thanks @gingergirl
    This is great advice, I’ll talk to my chemist about this for me too.
     
    Gingergrrl likes this.
  13. kangaSue

    kangaSue Senior Member

    Messages:
    1,093
    Likes:
    1,289
    Brisbane, Australia
    It's in a lot of osmotic laxatives too - Miralax (Movicol in Australia) is PEG 3350. That always gave me a real gut ache.
     
    Gingergrrl and Mel9 like this.
  14. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,107
    Likes:
    35,376
    USA
    Thanks and hoping your pharmacist (chemist?) will not have any problem with giving you the full prescribing info for each of your meds so you can see the inactive ingredients. My pharmacy had no problem whatsoever but never would have done it without me requesting the info.

    Miralax is what they want to use for colonoscopy here :bang-head:. I know I am never going to tolerate such a huge amount of it although some day when I have to do it, I am going to test a microscopic amount first and see how I react.

    @kangaSue or @Mel9 Have either of you ever had a colonoscopy and if so, what did you use for the Prep Drink? (sorry to briefly go off topic :D)
     
    Mel9 likes this.
  15. kangaSue

    kangaSue Senior Member

    Messages:
    1,093
    Likes:
    1,289
    Brisbane, Australia
    Yeah, I've had a couple. It's quite a challenge for me just to cope with the volume of the prep in having gastroparesis but I'm so used to having an upset gut and abdominal pain that the prep is no different to just having a typical bad day.

    Well, make that 2, maybe 3 days! I'm far from typical as I have to do a "long prep" (2 or 3 days) and I do a combination of drinking the prep and tube feeding it (I still have feeding tube access to the small bowel) so when I start to feel like it's going to cause vomiting, I switch to the tube to finish the prep off. I have to do 3 litres of prep this way which is ColonLYTELY and loaded with PEG 3350.

    I haven't done a prep though since I found that PEG was a real problem for me.
     
    Gingergrrl and Mel9 like this.
  16. Mel9

    Mel9 Senior Member

    Messages:
    708
    Likes:
    1,767
    NSW Australia
    I, like @kangaSue, haven’t had the prep since I worked out the problem with PEG. The allergy explains why I was so sick for so long after my latest colonoscopy.

    There was another thread about this recently and @erin wrote that she used laxative pills instead.
     
    Gingergrrl and kangaSue like this.
  17. kangaSue

    kangaSue Senior Member

    Messages:
    1,093
    Likes:
    1,289
    Brisbane, Australia
    Ahh, that's right. I was forgetting you can just load your system with Epsom Salts (magnesium sulfate) for a bowel cleanout as a suitable alternative to a proprietary colonoscopy prep. You don't absorb too much of this magnesium so it "goes through like a dose of salts" as the saying goes.

    You would want to add in some electrolytes mix with it though I think, especially if your colonoscopy wasn't scheduled for early the next day.
     
    Gingergrrl likes this.
  18. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,107
    Likes:
    35,376
    USA
    I've actually brought up the topic of colonoscopies in a few threads (the thread re: my mom's colon cancer, Sushi's thread re: colonoscopy precautions if you have dysautonomia, a thread I started re: consulting with an anesthesiologist prior to having a colonoscopy, and this one re: products that contain PEG and the Prep Drink). I don't actually know if I am allergic to the ingredient PEG but with my track record, it would not surprise me.

    Thank you KS & Mel for sharing your experiences re: colonoscopies. I can't take large doses of Magnesium (or anything that blocks the calcium channel) although I am okay with a very small dose (which wouldn't be relevant for a colonoscopy). I would have to break up the prep drink into two days b/c I also cannot handle too much fluid at once (beyond disliking it, my body truly cannot process too much fluid at once). I broke my IVIG infusions into 3-days when most people could have easily done my dose in 2-days. Then the anesthesia risk is a whole other issue.

    I feel like it is not going to be possible for me to do this procedure but at some point I am going to test a micro dose of Miralax just to see how I tolerate it. I am assuming Miralax does not have magnesium in it. I still have a lot of research to do on this and never have the time to fully focus on it.
     
    Mel9 likes this.

See more popular forum discussions.

Share This Page