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Looking for feedback on tapering off Cortef

Gingergrrl

Senior Member
Messages
16,171
I have been taking 15 mg of Cortef (hydrocortisone) since approx April or May 2015 to help tamp down MCAS reactions. I am unclear how much of a role it has really played versus my core MCAS daily meds but at the time we were desperate to find anything that could allow me to eat without anaphylaxis (which thank God is no longer an issue thanks to my MCAS doc and the right meds.)

I have been gaining weight from Cortef and my MCAS doc agreed it was a good time to attempt to taper off of it. My Endo has wanted me off of it for months but my MCAS doc said to wait (back in Nov) so I did. My Endo and my MCAS doc proposed slightly different tapering schedules so I studied them both and am going with my Endo's plan which is slower and more gentle for the body (and MCAS doc agreed.)

I normally take 10 mg AM and 5 mg late afternoon (total 15 mg per day.) The plan is to reduce the 2nd dose by 1/2 pill so I will still take 10 mg AM but only 2.5 mg afternoon (total of 12.5 mg per day.) I do this for three weeks and then reduce the AM dose by 1/2 pill so 7.5 AM and 2.5 afternoon (total of 10 mg per day) for another three weeks. At that point, Endo wants me to do a blood test and not sure what happens next.

Has anyone done this before (with or without MCAS) and if so, how did it go? If the MCAS flares up, my doc said I can stop the taper and we'll try it at another time. Prior to April/May of this year, I had never taken Cortef before and I have not experienced any side effects from it other than the weight gain.

Thanks in advance for any thoughts or experiences on this.
 

Kati

Patient in training
Messages
5,497
A slower taper is better. I have weaned off a few years ago and It was hard. i don't have MCAS and felt the taper was too rapid.

I would suggest to be aware of your symptoms and should there be any concerns, slow the taper down further.
 

Gingergrrl

Senior Member
Messages
16,171
A slower taper is better. I have weaned off a few years ago and It was hard. i don't have MCAS and felt the taper was too rapid.

I would suggest to be aware of your symptoms and should there be any concerns, slow the taper down further.

Thanks @Kati and I was curious what types of symptoms to look for (besides the MCAS flaring up which will be obvious for me.) Do you remember what you experienced that led you to slower the taper?

My MCAS doc actually recommended a faster taper than my Endo and I am going with the slower one of three weeks in between in each lowering of a 1/2 pill.

I know when I've tried to taper the beta blocker my HR very quickly goes back to the 160's or 170's so it is crystal clear like the MCAS food reactions but with Cortef, I have no idea what to look for!
 

Kati

Patient in training
Messages
5,497
I have poor memory but depression comes pretty clear.
After that, my best guesses would be feeling in a bad relapse, pain.

My taper down had weekly dosage decreases. It was way too fast. The endo gave me the instructions.
I was only on Cortef for a few months, less than 4. 20 in the morning, 10 at night.
 

Gingergrrl

Senior Member
Messages
16,171
I have poor memory but depression comes pretty clear.
After that, my best guesses would be feeling in a bad relapse, pain.

My taper down had weekly dosage decreases. It was way too fast. The endo gave me the instructions.
I was only on Cortef for a few months, less than 4. 20 in the morning, 10 at night.

Thank you and I was doing 10 & 5 mg so a little lower. Am hoping the three weeks between tapering will be okay vs. the one week that you described. Will be on the look out for the symptoms you mentioned. Thank you again!
 

Jennifer J

Senior Member
Messages
997
Location
Southern California
@Gingergrrl .My memory is foggy with exact details.

I was on Cortef for years for exacerbations of my already constant angioedema. It took years to get to the point I could taper off it because of being exposed to something and needing to up my dose.

Once I stopped having to up my dose, it took a year to slowly taper off of it. It was stressed by the Endocrinologist that it was important to go very slow otherwise ________ could happen (I can't remember right now exactly what it was). I believe labs were done at each point before I decreased it more.

I think Cortef raised my blood pressure, thinned my skin and made me weak. I don't remember what else - oh, yes, and cataracts...:( Made me more susceptible to things (flu/colds...), too.

I was on it for many years though. Long story. Not sure if I really needed to be, now looking back and learning more . I was with county medical and couldn't see specialists for years.

I don't recall any problems when tapering. If I run across my notes of that time period, I'll let you know.

If you can go off of it that would be good. Slow taper. I'm wishing you the best with this.
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
I was on Cortef for years for exacerbations of my already constant angioedema. It took years to get to the point I could taper off it because of being exposed to something and needing to up my dose.

@JenniferJ Did the angiodema get worse when you tried to taper off of cortef? Do you have MCAS? I got your PM's but am now forgetting if you said you have MCAS or are in the process of determining this? I went on Cortef solely in the hopes that it would help reduce the MCAS reactions to food.

I think Cortef raised my blood pressure

I forgot about this part and my doc at the time also hoped that Cortef would raise my very low BP but it didn't. My current MCAS doc said it is possible that going off of Cortef could lower my BP even more but I am hoping this does not happen and is the last thing I need.

Made me more susceptible to things (flu/colds...)

This never happened to me and I have not had an actual cold or flu in three years. January 2013 was the last time.

If you can go off of it that would be good. Slow taper. I'm wishing you the best with this.

So far have reduced it by 1/2 pill as instructed (yesterday and today) and not noticing anything different. I am to stay at this level for the next three weeks so it is a slow taper.

Just a thought , cross taper hc with pregnenolone which can help natural cortisol production ? ?

@heapsreal Can you remind me what pregnenolone is and what it does?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,072
Location
australia (brisbane)
@Gingergrrl
Pregnenolone is a hormone and is the next step down from cholesterol and than other hormones are produced by using pregnenolone . Some have found like myself that it can help increase cortisol. It depends on the individual as to what hormones pregnenolone increases .

So it may be helpful coming off hc by helping increase natural cortisol levels. But start low and increase slowly as it can over hype people and feel agitated . Commonly recommended dose is around 50mg but for cfs people probably best to start at 5mg and increase slowly. Also different brands and difference between pills and creams. I find transdermal cream most effective for me.
 

Jennifer J

Senior Member
Messages
997
Location
Southern California
@JenniferJ Did the angiodema get worse when you tried to taper off of cortef? Do you have MCAS? I got your PM's but am now forgetting if you said you have MCAS or are in the process of determining this? I went on Cortef solely in the hopes that it would help reduce the MCAS reactions to food.

Hi, @Gingergrrrl. Apologies that I haven't been able to reply sooner. No the angioedema didn't get worst when I tapered off. Yay! I don't know if I have MCAS, it does need to be determined.

I forgot about this part and my doc at the time also hoped that Cortef would raise my very low BP but it didn't. My current MCAS doc said it is possible that going off of Cortef could lower my BP even more but I am hoping this does not happen and is the last thing I need.

Hopefully going off the Cortef won't lower your BP even more, since being on it didn't raise it. Fingers crossed.

This never happened to me and I have not had an actual cold or flu in three years. January 2013 was the last time.

Oh, that's good that you haven't had a cold or flu in 3 years. I think because I was on Cortef for so many years straight, I was more susceptible and hit more severely.

So far have reduced it by 1/2 pill as instructed (yesterday and today) and not noticing anything different. I am to stay at this level for the next three weeks so it is a slow taper.

I wish you the best with your slow taper. I think the amount and timing you are doing is similar to how mine was done.
 

Gingergrrl

Senior Member
Messages
16,171
Thank you @heapsreal and @Jennifer J for the support and feedback and so far the Cortef taper is going okay. I Googled pregnenolone but prefer not to add anything else at this time. I think the slowness of this taper will be okay and so far my MCAS remains stable and has not flared up in any way.
 

Gingergrrl

Senior Member
Messages
16,171
Just wanted to post an update that my Cortef taper is officially over after only 9-10 days :bang-head:. I had two horrible MCAS reactions to food yesterday and today (and today was to my most safest foods, not a new food.)

So we raised me back to the full dose of 15 mg from the 12.5 mg and I will try it again in another month or two after I am back from Stanford. It felt too risky to keep lowering the dose especially next month while traveling and I don't want to be in any scenario where I have to use the EpiPen.

Was curious if anyone on PR has experienced having to stop a Cortef taper in the middle and how it went for them? No medical advise, just curious how this went for others (if it applies to anyone else.)
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,072
Location
australia (brisbane)
Just wanted to post an update that my Cortef taper is officially over after only 9-10 days :bang-head:. I had two horrible MCAS reactions to food yesterday and today (and today was to my most safest foods, not a new food.)

So we raised me back to the full dose of 15 mg from the 12.5 mg and I will try it again in another month or two after I am back from Stanford. It felt too risky to keep lowering the dose especially next month while traveling and I don't want to be in any scenario where I have to use the EpiPen.

Was curious if anyone on PR has experienced having to stop a Cortef taper in the middle and how it went for them? No medical advise, just curious how this went for others (if it applies to anyone else.)

@Ema
I think has experience here ;)
 

Jennifer J

Senior Member
Messages
997
Location
Southern California
Just wanted to post an update that my Cortef taper is officially over after only 9-10 days :bang-head:. I had two horrible MCAS reactions to food yesterday and today (and today was to my most safest foods, not a new food.)
....
Was curious if anyone on PR has experienced having to stop a Cortef taper in the middle and how it went for them? No medical advise, just curious how this went for others (if it applies to anyone else.)

Hi, @Gingergrrl. Sorry for my the late reply to this, and so sorry to hear about your horrible MCAS reactions to food. I hope you are doing better now. I had to several times stop my Cortef taper in the middle and start tapering again at another point. It was a long process for me. It went fine. Eventually I was able to taper off completely. I hope your next taper goes well.
 

sparklehoof

Senior Member
Messages
186
Location
North Carolina
I have been taking 15 mg of Cortef (hydrocortisone) since approx April or May 2015 to help tamp down MCAS reactions. I am unclear how much of a role it has really played versus my core MCAS daily meds but at the time we were desperate to find anything that could allow me to eat without anaphylaxis (which thank God is no longer an issue thanks to my MCAS doc and the right meds.)

I have been gaining weight from Cortef and my MCAS doc agreed it was a good time to attempt to taper off of it. My Endo has wanted me off of it for months but my MCAS doc said to wait (back in Nov) so I did. My Endo and my MCAS doc proposed slightly different tapering schedules so I studied them both and am going with my Endo's plan which is slower and more gentle for the body (and MCAS doc agreed.)

I normally take 10 mg AM and 5 mg late afternoon (total 15 mg per day.) The plan is to reduce the 2nd dose by 1/2 pill so I will still take 10 mg AM but only 2.5 mg afternoon (total of 12.5 mg per day.) I do this for three weeks and then reduce the AM dose by 1/2 pill so 7.5 AM and 2.5 afternoon (total of 10 mg per day) for another three weeks. At that point, Endo wants me to do a blood test and not sure what happens next.

Has anyone done this before (with or without MCAS) and if so, how did it go? If the MCAS flares up, my doc said I can stop the taper and we'll try it at another time. Prior to April/May of this year, I had never taken Cortef before and I have not experienced any side effects from it other than the weight gain.

Thanks in advance for any thoughts or experiences on this.
Hi Ginger,
I was on Cortef and didn't have too many problems coming off of it, but I actually used it to help me to get off Prednisone after taking it for a decade. Since there is similarity between them feel free to pm me if there's anyway that I can help.
 

Gingergrrl

Senior Member
Messages
16,171
Hi Ginger,
I was on Cortef and didn't have too many problems coming off of it, but I actually used it to help me to get off Prednisone after taking it for a decade. Since there is similarity between them feel free to pm me if there's anyway that I can help.

@sparklehoof Thank you for the offer but my Cortef taper didn't work and it worsened my MCAS reactions. Right now my MCAS is greatly improved again so I am just sticking with the Cortef and not attempting to taper again at present. But I appreciate the offer!
 

Gingergrrl

Senior Member
Messages
16,171
I am bumping this thread b/c I am now going to be attempting to taper off of Cortef again. My first attempt back in January 2016 was a complete failure b/c the reduction in Cortef led to severe allergic/mast cell reactions.

At present (Aug 2016) I am not having any allergic reactions due to IVIG and I've decided to attempt to taper off of Cortef again. It will be at a very slow pace, exactly as per my Endo's advice back in Jan. I will confirm this with all of my doctors but am certain they will say to give it a try.

The reason I want to do this is b/c of the amount of weight I have gained while on Cortef. Since January, I have gained over 20 lbs and I don't see this stopping which really scares me. This is the highest weight I have weighed in probably ten years or more and I know a big part of it is from the Cortef (combined with being in a wheelchair and not being able to do any form or walking or exercise).

So am hoping this doesn't end up flaring up my MCAS but am going to give it a try. If anyone has any additional feedback or good wishes, I'd love to hear it! Am feeling extra crappy b/c I re-injured my neck for the millionth time.

Thanks for listening.
 

Mary

Moderator Resource
Messages
17,283
Location
Southern California
Hi @Gingergrrl - My new doctor in T.O. (who I like better than when I first met him :)) wants me to try a low dose of Cortef - 5 to 10 mg. a day, as I see fit. I've read so many negative things about it, am very reluctant to try it. I think he thinks that PEM is caused by weak adrenals. He's a nice guy and knows a lot but I don't think understands ME/CFS or PEM. My cortisol levels were a little low a year ago, and I haven't been retested.

I guess I wanted to see if you had any thoughts in general re taking Cortef. I have taken a small dose of licorice several times - I seem to be very sensitive to it and only tolerate half a capsule maybe every other day.

And I have to watch what I eat every single day - I gain weight at the drop of a hat if I'm not careful because my activity is so limited due to PEM. So the thought of gaining weight on Cortef is a deal breaker for me.

I hope your taper is going okay!