Help, please! I am in constant fear of fainting!

[Pierreracine]

I don't know what's wrong with me and prednisone but since I began tapering off, it's from bad to worst. And still WORST again...

I'm so WEAK! To the point where I'm afraid to take a mile ride in the car in fear of loosing it. I'm living in pure torture. I have NEVER, EVER, been fatigued to this point. I'm having lightheadedness, dizziness, feeling like I'm 100 years old, taking a walk is like mounting the Everest, I get out of a chair like my grandfather did ... days before dying. My legs are feeling like a ton of bricks.

I KNOW there are symptoms when tapering, but I'm doing it the right way! That's what puzzles me. I seem to be the exceptional case of whatever it is that I have

I DON'T UNDERSTAND. When I went out of the hospital I was put on 40mg. Went fine, didn't sleep but felt very well, if a "little" (big time, in fact) hyper maniac.

But the day i went from 40 to 30 mg, things turned around... Went to see a doctor. Doctor said to raise and stay at 35 mg and wait till I see my gastroenterologist. The said stupid gastro told me to go down to... 15 mg.! Then 10 mg and wait for my small intestines test (next week) results, he said.

I didn't listen to him, thinking the tapering is too fast. So I gradually tapered: 5 mg a week or two, don't remember every steps...

Now I'm at 15 since almost 2 weeks and I am ALWAYS extremely tired. I don't know what to do. Go to the hospital? Going up on pred? Killing myself...?

I CAN'T STAND IT ANYMORE. It's my fourth leave of absence, I have to beg money from my wife waiting the canadian government sickness insurance, etc.

The only funny thing about this is I have Crohn but what kills me is...PRED, not Crohn, which is controlled.

My theory is the glands controlling my cortisol level are not functioning anymore! But I may be wrong... Maybe I have cancer. I don't care BUT TELL ME what I have!


Please someone, answer me. PLEASE! I feel very sick,and I'm extremely anxious about what is happening to my body.

Pierre, Canada

 

[Pierreracine]

Oh, and I forgot to mention: I eat well and have great appetite. The only think I'm not doing right is I go to sleep too late... (midnight to 1 am). But, hey, I know what lacking sleep is. This is NOT it. It's extreme weakness. Totally abnormal. When you are thinking "Am I going to call the ambulance?", this is NOT a bad night sleep...

 

[Jennifer]

"If you abruptly stop taking the drug or taper off too quickly, you'll develop symptoms of prednisone withdrawal — also known as cortisol deficiency. Signs and symptoms include:

Severe fatigue
Weakness
Body aches
Nausea or vomiting
Lightheadedness when standing (low blood pressure)

The amount of time it takes to taper off prednisone depends on the disease being treated, the dose and duration of use, and other medical considerations. A full recovery can take anywhere from a week to several months. If you experience prednisone withdrawal symptoms as you are tapering off the drug, contact your doctor."
http://www.mayoclinic.com/health/prednisone-withdrawal/AN01624

You should contact any doctor you can get a hold of (start with GI and see what they say) because it sounds like you're experiencing withdrawal symptoms. Low blood pressure makes me feel the way you mentioned and it is horrible. I was on too high of a dose for my heart medicine and I could hardly function cause my blood pressure was so low so my doctor lowered the dose immediately after I called them. If you can't get a hold of anyone and you feel that your symptoms aren't manageable and you are genuinely concerned then the ER is a possibility and they will be able to help you (especially if they find that your blood pressure has dropped too much).

 

[JoeGJ]

"Now I'm at 15 since almost 2 weeks and I am ALWAYS extremely tired. I don't know what to do. Go to the hospital? Going up on pred? Killing myself...? "

I felt fatigue coming off prednisone also. Call the Doctor! Go to the hospital! Never, ever think of killing yourself!!!

You also said "I eat well and have great appetite."
Find your favorite food and relax while waiting for the Doctor to call you back.

 

[ekay03]

It literally took me years to get off of pred. The good news is that pred comes in 1 mg tablets so really you can taper as slow as you need to. Ask you doc about the 1 mg pills.
Hang in there Pierre.

 

[mom2twogr8tkids]

I don't think I could give you any better advice than everyone else. Hope you get to feeling better soon.

 

[kekemonster101]

If you have been taking steroids for a long time your adrenal glands may have "fallen asleep". This has happened to be and is called adrenal insufficiency. I have to go down on EXTREMELY slow amounts or I will get sick. Your body usually produces about 7-10mg normally, so you may be close to that "threshold dose" and that is why you are feeling ill effects.

My endocrinologist always warned me about that low blood pressure feeling. I think you need to go SLOWER. Also, make sure you taper off the night dose FIRST. Your body makes cortisone normally in the morning. Also, I dont recommend the "take it one day, dont take it the next day" because it makes you feel awful.

As another poster said, get the 1mg tabs if you have to. And take your meds the same time every day.

Other symptoms you are likely to have you might want to watch out for: mood swings (dont kill yourself! its the prednisone talking! trust me!) sweats, trouble sleeping, aches, tiredness..

If you are to the point where you are almost fainting then you need to take more cortisone - if you take too little you can actually have an adrenal crisis - this can be very serious. Dont rush it - go slow. You may only need an extra 5mg or so to get you past your "threshold". Many doctors underestimate withdrawal tapering times - trust me - if you think its too fast, just manage it yourself.

Personally, i've switched to hydrocortisone, which is a faster acting steroid then prednisone. It only stays in your body 8ish hours or so, compared to prednisone, which is much longer. That may be an option when you get to the lower doses to help "wake up" your adrenal glands.

There is a blood test to test for steroid levels - you need to take it real early in the morning and have not eaten. These are all things to ask your doctor about. If your gastroenterologist cant seem to manage your steroids, you may want to see an endocrinologist.

Feel better soon! Remember - this too shall pass.

 

[Jennifer]

How are you doing Pierreracine?

 

[ChefShazzy]

Hi Pierre, I hope you are feeling better! I would agree with what others have said above, try tapering by 1mg a week... I had to bump up my dose a few times before I realised that once I get to 15mg a week, I need to taper by 1mg per week.

 

[Pierreracine]

Thank you Chefchassy,

I may do that. Though I feel much better today. But I will take your advice inro consideration.


Pierre Racine, Montréal.