Do you push through side effects?

[Sea_Star]

If you really need the Pred or Entocort to diminish inflammation, but it's known you get heart palpitations from them, have you pushed through it, waiting for the light at the other end? Or do you stop it?

I tapered Entocort after being on 6mg from June to Oct. Within 3 weeks, my RLQ soreness has increased. Restarted Entocort 9mg today, on Pentasa 4g now, waiting for 6mp to kick in (re-started that last night).

Last time, I developed chest pain and palps, but the ER found nothing wrong...why have I developed a sensitivity to meds?! This didn't happen the first time lol

 

[Clash]

Heart palpitations can be a side effect of pred so if they start up again I would have the doc check to make sure all was well then you can decide if you want to stay on the med and fight through the side effect.

It can take a few months for 6mp to reach therapeutic levels though so getting the inflammation under control in the mean time is important.

 

[Kev]

Have you discussed the side effects you are experiencing at length with your doctors? Have they run tests to see if there are other side effects that have gone un-noticed?

Steroids have cost me my teeth... plus very probably diabetes... plus then drove my stable diabetes into overdrive. I have had a bone density scan done to determine if there are other issues (osteoporosis), plus I just had a retina scan done to see if it affected my vision. Juggling the benefits and risks of our meds is something that needs consultation with trained experts.

Currently, I'm off steroids... but MAY have to go back on them... plus I'm taking very high doses of Remicade on a rapid basis (now every 5 weeks) to try to stop my disease. But, this course of treatment poses a risk... so I have to have blood work every month to watch for it.

I was on Imuran when it nearly killed me... the potential for negatives from our meds is a reality. However, stopping/starting or re-starting them without checking with a doctor is a very risky proposition. For example, steroids typically have to be gradually reduced. Or, using Remicade... if one stops it for any protracted period, then re-starting it might be risky. There's a distinct possibility that there will be anti-bodies built up that could be an issue.

At one time I was on high dose steroidal enemas... month and a half... absolutely the most painful 'treatment' I ever endured... but it put my 1st round with IBD into a decade long remission.

Enduring pain is one thing... we each have our own thresholds. But, often pain is a sign of something bad going on... inflammation, scarring, strictures... it should to be explored before permanent damage might be done. It's a job for a professional, not a layperson.

 

[Sea_Star]

Kev-

What reaction did you get when you were on Imuran? Oh i KNOW meds can be much worse than the actual problem!! Aside from premedication for MRIs and CTs, i've never taken prednisone. I told the nurse, and i mentioned it to my Dr. when I saw him (a week after stopping Entocort) but since I was done with Entocort, that was that. But because I didn't tackle the low-levell inflammation in May, and was just on Entocort, and didn't increase Pentasa to 4g until after I felt the RLQ soreness, I'm having to go back on Entocort 9mg. What other choice do I have? :/ The nurse practitioner was the one to tell me, since I've been speaking with her directly over the phone (Mayo Clinic in Jacksonville, FL...about 4 hours from me). She's been directing me to stop 6mp re-start it now with Ent etc.

I'm so sorry you've developed a lot of the repercussions of Prednisone (nasty drug for the body, a blessing for one organ lol) But wow...don't you wish they had an injection version of a steroid to just go directly to the gut? haha

I hope Remicade works for you quickly! Did you try 6mp?

 

[Kev]

I had a love/hate relationship with pred.... I felt like superman when I was on it full strength... went thru hell tapering off it... and my disease always rebounded after I came off it. Went thru this roller coaster for a year way back in 06... and every time I went back on it, I needed higher doses to achieve the same effect.

This time around, oral steroids ... even at very high doses... did nothing to stop my IBD. It just messed up my diabetes... which I didn't have back in 06. Only IV steroids worked, and they were only administered in hospital.. with staff checking my sugars and injecting me with insulin to try to balance things out. It was a stop gap measure, and not feasible.

I never had any 'blessing' from steroids..

As for Imuran... crippling pain and a rash that took nearly a year to vanish after coming off the drug. Pain started in my back, and went down to the end of my extremities. Even the soles of my feet... incapacitated me enough that I ended up in the ER. Pain went away after 48 hours.. and a tiny 'trial' dose confirmed it was the drug.. a very close call.