Rapid heart beat/rate?? LDN or Entocort?!

[Sea_Star]

Ok, this is worrying me (what ISN'T? lol).

I've been on Entocort 6mg since June 13, 2014
LDN 1.5 started approx June 2, 2014
LDN 3 mg started approx June 20, 2014
LDN 4.5 mg started a week later

For the last week or so, I've had a center-left chest ache, pressure-like....but in the last few days, I've felt like my heart is accelerated. I took my carotid pulse today (74) but it doesn't feel right. When I make a movement it goes even faster. It's almost a squeezing feeling, like tightness, tied into feeling like i can't breathe deeply. I'm only 25 no known heart issues, so I'm thinking it;s one of the 2 meds. Can't remember if Entocort caused this last time, so I didn't take my Entocort today to see if it's that (obvi i need a few days off it to see...) and I'm not taking my LDN tonight to see if it's that. I'm seeing a new GI August 27th..

Have any of you had this?!

 

[Patricia56]

You need to go to the doctor tomorrow. Your regular doctor not the GI.

Do not mess around with chest pain.

If it gets worse go to ER OK?

And both meds have chest pain listed as a rare side effect. Which doesn't tell you anything about how dangerous that side effect is or what is the underlying mechanism - oh, say a heart attack.

 

[Sea_Star]

Thank you Patricia56! I tried to see my Primary doctor Thursday morning but she was booked...as well as the rest of the dept. They told me to go to the ER with these symptoms (even though I didn't think I was that toxic appearing!). Everything came out "normal" in the ER; they said all was okay. So I told them I highly suspect it's the medication. Of course, they told me to contact my GI before tapering....I called him on Thurs and Friday (letting the secretary know i was in the ER)...he didn't respond until this morning, leaving a vm saying "if I'm having problems with the LDN, then go back to 1.5.."....really?? All I said was Idk if it's the LDN or Entocort! So I started tapering myself from 6mg of Entocort to 3mg starting Friday Jul. 11...I feel a liiittle better, but still have rapid heart rate, and now not sure what to do. The cramps are appearing again, but I don't want to ruin my heart lol. Maybe it's the LDN...but should I wait til I taper from Entocort? And how long does that take? I've taken 6mg since June 13th.

I'm seeing a new GI August 27th...still a bit away That's the soonest they have, and I keep calling! I'm following up with a Cardiologist in a couple weeks, after I've tried tapering off the meds.

 

[Patricia56]

How high is your heart rate when it feels like it's racing?

Any chance this could be anxiety? Two of the most frequent symptoms are racing heart and trouble catching your breath.

Have you seen any benefit from taking the LDN? According to the info I found online you should expect to see improvement within days. If no improvement after 30 days then dose should be increased. Again there should be a fairly rapid response otherwise LDN is unlikely to be helpful to you.

There's an LDN forum on here - you might want to post your concerns there. http://www.crohnsforum.com/forumdisplay.php?f=32

 

[nogutsnoglory]

Honestly I think you need to get it checked out. You never want to take a chance with chest pain. I also think you don't want to taper or miss doses if you don't have to. You really need a doctor to see you.

 

[Sea_Star]

How high is your heart rate when it feels like it's racing?

Any chance this could be anxiety? Two of the most frequent symptoms are racing heart and trouble catching your breath.

Have you seen any benefit from taking the LDN? According to the info I found online you should expect to see improvement within days. If no improvement after 30 days then dose should be increased. Again there should be a fairly rapid response otherwise LDN is unlikely to be helpful to you.

There's an LDN forum on here - you might want to post your concerns there. http://www.crohnsforum.com/forumdisplay.php?f=32

I checked my pulse, and it seems to be around 74....even in the ER when they took my orthostatic BP, highest was maybe 104? I tend to have low BP. I haven't felt anxious...it's weird: this started as chest pain, which switched to "accelerated heart rate" feeling over the course of a week.

I've been on LDN since June 2nd, but that was the 1.5mg dose. I've been on 4.5mg for maybe 3 weeks? At the same time, it's hard to tell if there's improvement since I'm pretty asymptomatic. I don't have D, just inflammation that shows up on scans, colonoscopies....but when i'm in a flare (like now, 1st one ever after being diagnosed 4 years ago!) my symptoms are abdominal pains. And yes, when I lowered the Entocort a few days ago, I can tell! But I'd rather have abd pain than putting stress on my heart with these meds! I took 3mg of LDN yesterday, tapering it to see if that's a cause. And thank you, I've posted on that thread
Do you know if you can stop LDN cold turkey, or do you have to taper? I have 0 confidence in my current GI doc. His specialty is Fecal Trans., and hasn't examined me once and I've seen him 3 times! :/

 

[Sea_Star]

Honestly I think you need to get it checked out. You never want to take a chance with chest pain. I also think you don't want to taper or miss doses if you don't have to. You really need a doctor to see you.

I got it checked out in the ER and they said everything was normal. I do want to see the cardiologist, but don't want it to be a waste of a visit when he tells me "it could be the meds, get off them, then come see me," you know? So I'm seeing him in 2 weeks. My mom is a doctor and i live with her so at least I have that comfort lol. But still, I just want to go back to normal again, at least cardiac-chest-wise! I want off all meds (my Crohn's is "mild") to see if that's the culprit....but i have 0 confidence in my current GI (he told me to jump from 4.5mg LDN to 1.5mg...) so I'm trying to find how to taper off Entocort from 6mg to nothing. I started taking 3mg on Friday, July 11th. Same with LDN

 

[Sea_Star]

Ok so I just spoke with my GI. He said to stop the LDN completely and that the Entocort shouldn't be doing that CRAP. He doesn't know I lowered my Entocort from 6 to 3!! Is it safe to go back up to 6mg again?!

 

[Kev]

I would think that any doctor worth his/her salt, upon hearing your issues, would look at the 'pedigrees' of the two drugs you are on... and recommend stopping the one they are least comfortable with... in this case... LDN. Makes perfect sense. I don't know whether it is the root cause of your chest issues... but stopping it sounds like a pretty reasonable response.

However... you say you have no faith in this doctor.. and you aren't adhering to any advice he is offering.. you are tapering the Entocort without telling him... and I know that LDN shouldn't be combined with more than 10 mg of pred (I don't know if there is a 1 to 1 comparison/conversion with Entocort)... so my only thoughts are... you aren't listening to your doctor... you are telling him what you are/aren't doing... you need to see a doctor you can believe in... and communicate with... and listen to when it comes right down to it.

I think this could be a very nasty form of Russian Roulette if you don't reign things in a bit.

 

[Sea_Star]

I would think that any doctor worth his/her salt, upon hearing your issues, would look at the 'pedigrees' of the two drugs you are on... and recommend stopping the one they are least comfortable with... in this case... LDN. Makes perfect sense. I don't know whether it is the root cause of your chest issues... but stopping it sounds like a pretty reasonable response.

However... you say you have no faith in this doctor.. and you aren't adhering to any advice he is offering.. you are tapering the Entocort without telling him... and I know that LDN shouldn't be combined with more than 10 mg of pred (I don't know if there is a 1 to 1 comparison/conversion with Entocort)... so my only thoughts are... you aren't listening to your doctor... you are telling him what you are/aren't doing... you need to see a doctor you can believe in... and communicate with... and listen to when it comes right down to it.

I think this could be a very nasty form of Russian Roulette if you don't reign things in a bit.

Kev, the reason I started tapering myself was because I had called him on Thursday (before ER) and Friday, letting him know I was in the ER the previous day, and he didn't answer me until Monday. I have a vague recollection that my past experience with Entocort caused chest pain (or maybe because it's listed in the rare side effects, same with LDN??) but I know steroids can be the culprit for many things. Now that he told me to stop LDN, I do want to continue the Entocort back up to 6mg, but this doctor hasn't examined me once. I had the top doctors in the past few years when I was blinded-thinking nothing was wrong, since I felt fine...the colonoscopy at Mayo clinic this May showed some infllammation, again no symptoms, but after that is when I started having abd pains. This doctor's specialty is FMT, and has prescribed SCD and LDN...so I guess now that I've accepted...things...I should go back to where I started and take this more seriously. I am TERRIFIED of trading some abdominal pains for cancer or ovther drug-induced illness, when my case is mild...

So I'm seeing a new GI August 27th. But for now, I want my heart back to normal You never had chest pains with LDN? Maybe I increased it too quickly...because I figure I would have seen symptoms early on in LDN treatment, right? Not a month later! Thx Kev!

 

[Sea_Star]

ps: Besides, the ratio of posts on here relating Entocort to Chest pain/heart/palpitations is MUCH higher than to LDN....this also influenced my action of lowering it...

 

[BLittle]

Sea Star... How was your outcome with Entocort and the heart racing issues. I have been recently diagnosed, 4 weeks into taking 9mg of Entocort. I am waking up in the middle of sleep with racing heart issue. Just interested in your experience.

Thanks for replying.