Starting Hydrocortisone Today...questions....

[Misfit Toy]

So, I was on Prednisone for a week due to an infection and not being able to breathe. I loved it. Normally, Prednisone can go south for me. I can become rageful and feel lousy. This time, I wanted to stay on it. I had more energy, no pain, etc.

Alas, my CFS doc was like "NO WAY." It's stealing from Peter to pay Paul. So, he wants me on hydrocortisone. My adrenals have been tanked. For a long time.

Here are my fears; I was on it back in 2009 and I was so tired on it. I couldn't even get out of bed, it was so weird. I also just felt anxious. I know, the opposite of how you are supposed to feel. I remember my heart flying on it. Years ago, back in 2002, I could take it. But, in 2009....nope. I couldn't handle it.

My doc wants me on 20 mg. One in am and one around noon. Well, this is a problem because I don't wake up until around 11 am.

How are all on it/taking it doing or those who took it? What times do you take it and do any of you wake up late and take it? Also, does anyone get tired on it? I took it this morning at 11 am and within 20 minutes I became really tired. All I know is, if I become as tired as I did in 2009, I will not be able to stay on it. I was a mess and anxious as all hell. I am supposed to take the next dose at 3 pm. Any thoughts on why one becomes fatigued on it?? I suppose it depends on where your adrenals are. I literally feel like I have hit a brick wall after taking it. I don't get it.

I just wish I could stay on Prednisone instead.

 

[shah78]

I never quite got the HC protocol quit. right. It was never "enough". I found that a large dose of Licorice powder first thing upon rising did a much better trick. I had to take a full tablespoon for over a year, but there were no side effects. The taper was glacially slow, but painless,over a year and a half. Now I do a half tsp, with up to a tsp.and a half during allergy season.It beats taking a liver rotting antihistamine. No dealing with the " medical-industrial complex" and carrying those demeaning white bags out of the pharmacy. Just a thought

 

[Misfit Toy]

@shah78 -What is a demeaning white bag out of a pharmacy? I have a bottle of hydro. Is hydrocortisone a liver rotting antihistamine?

 

[Kati]

@Misfit Toy if you get up at 11, take one with breakfast and one with lunch, which would be 3-5 PM i suppose? You must take them with food as this drug is hard on the stomach.

Your dr is being conservative because Prednisone has serious long term effects to cause osteoporosis. Also he wants you to take it as early in the day as possible because it can cause insomnia.

 

[shah78]

The "demeaning white bag" is the small.flimsy white bag they put the prescription in in American pharmacies. The "liver rotting"product is the antihistamine, not the hydrocortisone.Hydrocortisone at physiological levels does not rot the liver or even the adrenals for that matter. It just didn't work as well as the licorice powder for me.

 

[Misfit Toy]

@Kati , thanks for letting me know because my stomach is a mess after taking it. Are you tired from it? It makes me tired.

 

[Kati]

@Misfit Toy I took it over a year ago for 3 months when my morning cortisol was at a critical low. It didn't touch me at all, I was taking 20 in the morning (Cortef) and 10 at dinner time. The worst part for me was to wean off of it.

You may be experimenting withdrawal from prednisone which would make you exhausted and somehow depressed.

And yes, make sure you eat plenty of food when you take your steroids and it should get much better for you.

 

[Dreambirdie]

It was the worst thing I ever took and caused one of the worst crashes I have ever had. In fact after 5 years I am still not over that crash. HORRIBLE EFFECT. I have written about it a lot in the past, so you could do a search to find the details.

I wouldn't touch it with a ten foot pole.

 

[CFS_for_19_years]

I watched this lecture about the adrenal glands from the Holtorf Medical Group last night, done one a whiteboard by a naturopath. I thought it was excellent. Among other things, she did discuss the use of hydrocortisone. There is not one doctor in the world who will take an hour to explain how the adrenal glands respond to supplements and medications. If you watch this I think you'll have a better understanding of the choices available to you:

I don't how long this lecture will be up:

http://www.holtorfmed.com/live/

 

[Misfit Toy]

@Dreambirdie -I know about your crash as I had a similar one. It was awful. My doc wanted me to try it again 5 years later. I feel drugged on it. Like on Valium. It's awful. I only took it today. I am supposed to take it one more day and if I am as tired...stop it.

I am just so bummed because I was "living" and happy on Prednisone for 6 days. I haven't felt that good in years. I wish this adrenal mess could be answered. So sick of it.

 

[Kati]

@Misfit Toy , the reaction you have is not due to Cortef but it is due from withdrawing from the Prednisone. the high you have felt while on it produces a 'low' when you stop. Cortef dosage equivalent is nowhere near Prednisone. It's a horrible feeling

 

[shah78]

Consider Jackkruse's Cold thermogenesis. It does everything that he claims is does. Google : CT6 Jack Kruse. He's actually clear about it. For once! CT relieves pain , increases energy and calm the mind.

 

[Tired of being sick]

long term Steroid use will destroy your immune system..

So since CFS/ME patients have immune dysfunction as it is

You know the rest

I was on max dose 50Mg for five days about 2 months ago

It works better than opiates for inflammation pain

But even if you did take it for a period of time our immune dysfunction would eventually attack it by making us feel worse..

This is the very reason I am in the process of getting a morphine pump implanted in me

For the fact pure morphine (no fillers that ruin organs) goes directly to my spinal fluid

This is about the only method that has a chance for long term treatment for the fact it will have the least side effects
over ALL chronic pain treatments and the pump is the most healthy way to go

 

[Misfit Toy]

@Tired of being sick -I looked into a pain pump last year. Wow! I can't bring myself to do it.

 

[heapsreal]

If your low in cortisol then replacement doses aren't going to suppress immune function. If your response is not text book then may need to look at other hormones.

I would also consider pregnenolone as it can help some with cortisol but also help back fill other hormones. Lipid matrix preg seems to be a popular preg pill. Otherwise transdermal creams are highly regarded for pregnenolone. But start low and go slow example 5mg and take it from there.

 

[Misfit Toy]

I'm low in cortisol and DHEA. My DHEA is non existent, but I don't want to take DHEA because I know many who do horrible on it.

I'm skipping cortisone today because it's 2 pm and I just woke up. It's too late. I'll take it tomorrow. If I am so exhausted from it tomorrow, I need a different plan.

 

[Tired of being sick]

@Tired of being sick -I looked into a pain pump last year. Wow! I can't bring myself to do it.

Why?

 

[Misfit Toy]

@Tired of being sick - for a lot of reasons. I don't want a pump in me. I have heard horror stories, plus you then have to rely on meds your whole life, which I am not ready to do. Once you are on that pump, it is close to impossible to ever get off of Opiates and no doctor really wants to touch that. They don't. I am not saying one shouldn't do it, I am just not there mentally yet. I have fibro, Sjogrens, Interstitial Cystitis and I do have pain, but it can be tolerable. Once you are on that pump, you are on Opiates for the rest of your life and yeah....no thanks. Not yet. I am not on Opiates all of the time right now. I would like to avoid it as much as possible. Plus, from speaking with another one with the pump, the pump is the size of a hockey puck. It hurts, you can't wear certain jeans or pants with it and that bothers me. I like jeans and fashion and I am tiny. That pump protrudes on skinny people.

 

[Tired of being sick]

@Tired of being sick - for a lot of reasons. I don't want a pump in me. I have heard horror stories, plus you then have to rely on meds your whole life, which I am not ready to do. Once you are on that pump, it is close to impossible to ever get off of Opiates and no doctor really wants to touch that. They don't. I am not saying one shouldn't do it, I am just not there mentally yet. I have fibro, Sjogrens, Interstitial Cystitis and I do have pain, but it can be tolerable. Once you are on that pump, you are on Opiates for the rest of your life and yeah....no thanks. Not yet. I am not on Opiates all of the time right now. I would like to avoid it as much as possible. Plus, from speaking with another one with the pump, the pump is the size of a hockey puck. It hurts, you can't wear certain jeans or pants with it and that bothers me. I like jeans and fashion and I am tiny. That pump protrudes on skinny people.

I have chronic neck(multiple injuries) and back pain(broken back and born with open vertebrae hips off center 1 1/2" )that surgery can not help which opiates by mouth do not touch on top of associated CFS/ME pain ....
Fentanyl and dilaudid shots are the only meds that really helped me..



My CFS/ME pains are poorly managed with Tramadol max dose

●generalized muscle pain
●new onset headaches
●aching, burning shooting pains anywhere in the body
●fibromyalgia is a common concurrent syndrome with ME/CFS
●arthralgia without joint swelling
●Veteran M.E. practitioners sometimes noted that pain is most frequent in the upper spine and neck area
(where spine connects to brain stem)
●abdominal pain

I don't know about you but my pain is only going to get worse and worse with age/progression
and I accept it head on..

Right now I wake up multiple times per night as if a tractor trailer hit me..
Which opens the importance of restful sleep can of worms

If you are waking up suspecting pain as the culprit
your pain is not properly managed

 

[Misfit Toy]

@Tired of being sick -I would want the pump if I were you, too. I don't have disc problems. I have fibro and it's gotten worse in the last 2 years. Really bad. Fibro and Sjogrens. I have no idea what the future brings. I keep hoping I can come out of it or help my immune system enough to make it better. I don't wake up multiple times a night every night. A lot of times it's something other than pain that wakes me up.

I know pain is awful though and I have it. I wish I knew what to do for it. Time will tell.