Adrenal Insufficiency Support Group

Hi All,

I'm needing some knowledgable opinions again. Just a short recap: I was taking 7.5 mg of pred each day which was prescribed by my GP and feeling pretty good. Finally got into an endo and she confirmed SAI, but wanted me to switch to 15-20 mg of Cortef after weaning down to 5 mg of pred. I've been on the Cortef for right at 2 1/2 weeks, but I've been sick with severe sinus infection/head colds which have put me to bed two different times in that short period of time. Could this be due to the Cortef not being enough for me? Also, they have given me the generic for Cortef, and I've noticed posts that people have had problems with the generic. Could that be the culprit?

Also found out recently that besides being low on Ferritin, Vita D, DHEA, and a couple other things, the my testosterone is low. Guess that surprised me due to being a female, but wondered if anyone else is low and if there is any significance?

Thanks,

Tanya

In terms of glucocorticoid equivalence Prednisone is between 3.5 and 5x the potency. (Prednisolone is spot on 4x. ie it doesn't vary as much) That makes your 7.5mg of Pred "worth" between 26 and 38mg of HC and 5mg of Pred between 17 and 25mg.

You didn't say how long you took to wean 7.5 to 5mg of Pred. Although the converted Pred to HC values seem reasonable, how long you took to get there could have been unreasonable! If it was (say) 1 week I would assume that 7.5-5.0 drop is the root cause. If it was more like 6 weeks and you felt okay on 5mg of Pred before switching to HC then it will be a HC equivalence issue. You will also be carrying more water from the 5x more mineralocorticoid in the HC. That will cloud and "how you feel" symptoms.

Yes the testosterone thing affects me. Same basic methodology of action. When I first started HC in 2005 mine dropped from mid range to bottom of range, Recently when I suppressed ACTH even more by using Dex it fell below range and I now have patches. In girls testosterone comes through the androgen/DHEA path via the adrenal glands. By taking Pred you would have reduced DHEA etc. Its possible that with your dose reduction (meaning a tiny bit more ACTH) it might rise again. Really though once you get the glucocorticoid side settled a check of DHEA, testosterone, progesterone and estrogens will be worthwhile. (DHEA is a substrate of testosterone too)

Interesting too looking at steroidogenesis the path to estrogens can come through testosterone. I have no idea if that is relevant to girls though. (It may more come through the androstenedione path)

Bob

I totally agree with Bob but also want to add that if you have infections you have to updose for the infection. I find I have to updose even for a cold though the doc says not. I get symptoms of being low - cold intolerance mostly, but also fatigue, aches and blurry vision/floaters. I updose until symptoms abate and when I am conscientious about that I find the cold or infection takes less time to get over.

Deb

Bob, here is how I weaned to the HC per the doctor's instructions. The first week I took my 7.5 mg one day, and 5 mg the next day. The second week I was to take 5 mg one day and 2.5 mg the next, but before I started doing that I got sick (with head cold/major sinus infection) and was in bed for three days. Therefore, I stayed at the 5 mg of Pred until I felt better, about 5 days later. Then I dropped down to tthe 2.5 mg every other day. That's when the extreme fatigue/brain fog set back in. I did switch to the HC (10 mg am and 5-10 mg at 2:00 pm) after five days of alternating 2.5 and 5 mg of prednisone. Therefore, it was about 2-2 1/2 weeks weaning off the Pred and I've been on the HC for 2 weeks now. I wanted to give it a fair chance, but didn't know if the switch was making me sick or the sickness was taking the fairness out of evaluating the switch.

And Deb, I was updosing when I got sick and was on the Pred, but since I switched to the HC, I have no extra to allow for that and don't think the doctor will give me that before going back in April for my first follow up with bloodwork. I do have some Pred left and actually wondered about using it to updose, but have a feeling mixing the Pred and HC is probably not a good idea. Any thoughts on that?

Thanks,

Tanya

My switch from prednisone to HC was horrible - both times I tried to do it. It also seems like they are trying to put you on a significantly lower dose. As Bob said, they weaned you down pretty darn quick as well. Some of us don't like less. I really don't think 7.5 of prednisone is an unreasonable dose - my doctor would be thrilled if I got down to that! When I was on HC, I did my up dosing with prednisone, learned that one from Bob. If you haven't contacted your endo yet about all of this, I certainly would make a phone call on Monday AM!

Tanya

Well I'd adopt the dose as needed approach. The problem though is the weaning process will ALWAYS produce AI symptoms. You have to look at why you are weaning and thus how much pain etc you are going to put up with. Simply being told you are on "too much" has to have proof as to why. If your BG and BP were high and you screamed a lot driving in traffic, these might be good reasons. Not being within statistical dosage norms for weight etc is NOT a good reason IMO.

You also don't know whether the sinus thing was a cause, effect or unrelated! You have two variable states to contend with, that you are weaning AND that you are sick. Which is the more important? I'd say the illness response is, but others may have a different view. Mixing the two steroids in the short term isn't usually a problem. I have HC, Pred and Dex on hand and currently take a HC/Dex mix. Of course if you have digestive or allergic issues with the Pred then that's a good reason to not take it!

Bob

Post edited by: bob3bob3, at: 02/19/2012 03:30 PM

Bob, you are exactly right. I don't know if the sinus thing is a cause/effect/unrelated, and that's why I've been so perplexed. I was bound and determined to stick out two weeks on the HC regardless how I felt to see if I could adjust, and then getting sick again had to jump in the way! And yes, at this point, getting over the sickness has to be my priority due to teaching and helping take card of my sick mother. I felt so good when I was on 7.5 mg of the pred, so I think I will try adding some pred (maybe 2.5 mg) to get through this.

And Hypomamma, you're exactly right too. I do need to call the endo and see what she says. BTW, you said you tried to switch two times. What made you decide that it wasn't worth it, and what are you taking now, if I may be so nosey?

Tanya

ibusiteacher:

I made the change from Prednisolone to hydrocortisone on the advise of my endocrinologist, who stated that hydrocortisone is more bioequivalent to the cortisol as produced by the adrenal glands.

Like Hyomama, the change from Prednisolone to HC was DIFFICULT. It was a roller coaster ride. I felt unwell most of the time with variable and uncomfortable adrenal insufficiency symptoms. It took several months for to me fully make the transition.

I am now on hydrocortisone (brand name Cortef, not generic) and doing well. In fact, my adrenal insufficiency has been better stabilized on the hydrocortisone.

I was not expecting a good response to the HC, as I had been on Prednisolone for several years for an underlying auto-immune condition and was comfortable with it. I was very reluctant to change from the Prednisolone. Now I am glad that I did.

How one responds to Prednisone and hydrocortisone is uniquely individualistic. Base your decision as to hydrocortisone or Prednisone on how YOU feel as regards your symptoms and response to each.

I wish you the best in this journey to re-find health,

- Karen -

Karen,

Glad to hear you are doing well - but your experience of taking months to stabilize is enough to make me continue on the prednisone. I also had heard it was easier on your system to have the HC, and an integrative doc would have preferred me to be on that but my endo disagreed and wanted me on the prednisone. I still wonder about it though.

Tanya, you need to put on your "to-discuss" list the need for updosing. All of us have that need occasionally. Sometimes docs are hesitant because they don't trust that we are not going to just updose ourselves crazy. My endo was surprised that I was so cautious - using a quarter-pill as needed and then only more when the symptoms don't abate, so now he doesn't worry at all about giving me extra in the prescription. I think they worry we will push ourselves into Cushings, which was what my gp predicted would happen to me. Happy to prove him wrong and rub it in whenever I get the chance! Since I started treatment by the way I have lost 58 pounds so definitely no Cushings here.

Deb

iTeach91:

Even though it took several months to fully transition from the Prednisolone to the hydrocortisone, for me it was worth it.

My impaired cortisol symptoms are much better controlled on the HC as compared to the prednisolone. I sense that this is because the HC has a longer half-life.

The prednisolone, as with prednisone in general, was also having significant side-effects. The prednisolone was causing severe thinning of my skin and internal connective tissues. It was a contributing factor to an extensive bowel perforation that I suffered about a year and a half ago. No fun.

I keep some prednisolone on hand for up-dosing as I need (times of illness, stress, injury, dental procedure or cleaning). It is faster acting than the HC and addresses more immediately a need of low cortisol in the moment.

So, all and all, it is good to have access to both HC and prednisolone/prednisone available. Or at least it is for me.

Best wishes to you for restoration of health. Adrenal insufficiency can be frustrating as recovery is often slow and physician/clinical guidance can be less than expected or wanted.

- Karen -