Coming off self medicated steroids after 6 years!

The best advice I can give you is to seek out a dr to help you wean. Steroids should NOT be stopped abruptly but a very slow weaning process needs to take place. My daughter was on them for 2 months (max dose was 17.5 mgs a day) and the weaning process took 2 months.

Steroids take over for your adrenal glands. Abruptly stopping steroids can cause an adrenal crisis with symptoms like pain, diarrhea & vomiting, hypoglycemia & even psychosis.

So please, find a dr asap & get his/her advice. You have been on them too long to try to do this yourself.

Kelly

Kelly gives the best advice that can be given about this issue. I am a retired nurse and have lots of experience with patients on steroids. You need to fess up to the doctor (even though you will likely be given a rough time), and have him/her monitor you while coming off very slowly. Better to face the wrath of the doctor than run into major problems. Good luck.
Laurel

You really should withdrawn from steroids with the help from a doctor and it would help to find one you have confidence in. I cannot support doing it on your own. I have CIDP and was on prednisone for five years. It does have to be done VERY VERY VERY slowly. It took me one failed attempt and then weaning down slowly for a YEAR before I was safely off.

You’re getting some good advice here. And be sure to re-read that little pamphlet that comes with the medication. It reminds you about the risks of withdrawal, and what could happen.

I’ve been on corticosteroids for asthma since 1993. Pulmicort, Rhinocort, Bricanyl. When I lived in the city, I had infections in my airways most of the time, and had to take 2 doses of Pulmicort 4 times a day, plus Rhinocort 2 x daily, plus Bricanyl to control the asthma attacks. This was maximum, and I didn’t want to go on Prednisone because of the health risks, so finally, I moved out of the city, and in the first couple of years, the doc tapered me off my asthma meds gradually (Pulmicort: to 2 x 2 times a day, after that 1 x 2 times a day). The asthma is just barely under control, due to so many environmental toxins in the town here, smoky campground a few blocks away, people spraying lawns and trees all the time.
I have to really watch out for any of these things, or I have bad asthma attacks followed by lung infections. Same goes for the allergens in my home, products I use, foods I eat.

Don’t try to stop by yourself, because Pred is a powerful drug, and it’s known to be very dangerous to take chances with the dosage. In dealing with a doc, it might be helpful to outline on paper the whole course of your self-treatment, and how it controlled your asthma. In my opinion, the doc should give you some understanding and help you to taper off under supervision. Being chronically ill and taking meds is different from taking drugs as a psychological and physical dependent. I understand some of what you’re dealing with, and wish you the best. Come back again, and let us know how it’s going.

I think I understand from your comments that you have not been taking steroids for many consecutive days at a time, but rather “pulsing” yourself with steroids–in which you have had the steroids over 5-7 days every week or two. You also do not mention a known chronic immune mediated disease (like CIDP which is common here). Pulse steroids are different from daily long term steroids in the “dependence” mechanism. You are not as much at risk of the classic adrenal suppression where the adrenal does not work, but ARE at risk of your body not being used to or able to mount stress responses (because it does not have to–the oral steroids do that). You realize that self-medicating is not wise, however, the underlying process –terrible asthma and terrible eczema–were intolerable to you. To get a smart and safe transition off of steroids, you need to have help of a physician that will see both of these. There are a lot of ways to treat asthma and eczema OTHER than systemic steroids. Think carefully about what causes you to feel the need to pulse steroids. Is it breathing problems or terrible itching? If so, to safely stop, you probably will need inhaled steroids or something like Advair for the asthma and topical steroids for the skin. The point is that there can be a medical reason that your body has felt better on steroids and that this needs to be addressed as part of finding a better and safer way to control the asthma and eczema.

Part two. People feel better with steroids and you say this in your post. You may have very real medical reasons for steroids that your body was telling you, but there is very often something addictive about steroids AS WELL and it is really hard to separate these apart completely. One important way to help get over this can be NOT to stop steroids cold turkey (that is hard medically and mentally), but rather to spread them out so there is not the ups and downs. You, then, get the medical benefit, but not the “rush” of a pulse. For example, if you take 25 then 20 then 15 then 10 then 5 mg a day for five days every two weeks, you get close to the same amount of steroids by taking 10 mg every other day. It is probably better to stop to either change to this and then slowly go down to, for example, 7.5 mg every other day for two weeks, then 5 mg every other day for two week, then even slower from there OR to reduce the “height” of the pulses–for example, starting at 20 then 15 then 10 then 5 mg for two times, then 15 then 10 then 5 and slowly decreasing from there. The point is that your body and mind have gotten used to the pulse steroids and it will be very hard and not very safe to stop them abruptly.

None of us advocate “self medicating”, but when people do this, it is important to think not only about fussing about the danger of that, but also that there may be a very real underlying desperation to have something be different and better. It will not be safe and it will be really hard to stop steroids without helping what this was as well. I hope that this makes sense and I hope that you get a good plan to safely get off the steroids.
WithHope

My suggestion would be to call several pharmacists. When I tred to get off of my blood pressure medicine that I needed during the GBS, one pharmacist said that NO ONE ever gets off of them!! She looked at me like I had two heads! So I called several other pharmacists out of state and was told how to do it. Suppose I had listened to just her?? I would do the same with doctors although it gets more expensive.
It sounds like your body was out of balance from when you were young and then they put you on medication/inhalers which put you more out of balance.
You mentioned that you tried practically everything….maybe you went to the wrong wholistic ones.
I sent you a pivate message…if you look up in the right hand corner… with some suggestions.You are on the right Path..just haven’t had the right directions.

Best answer I could give, Kelly did much better. She sounds to be more expertice on this subject. God Bless and good luck.

Hi: I have been tapering off prednisone for 6 months now. I drop one milligram a month and am now down to 4. I feel great on the stuff and have an autoimmune disease (recurrent pericarditis) that comes back everytime I go below 3mgs. I finally was sent to a rheumotoligist who put me on what he called steroid friendly meds, medication that helps do the work for the steroids so you can get off of it without symptoms coming back. Everyone has given you good advise-I would only add that the best doctor to work with prednisone is probably a rheumotoligst as they work with this meds frequently for rheumotoid arthritis and such diseases. My regular doc, pain doc and cardiologist really had no clue how to help me get off the prednisone and I went through 6 months of hell before seeing the rheumotologist. I wish you the best in getting off this stuff because the side affects can be pretty dire. Jeff

After getting down to 5 mg. my body could only handle the withdrawls by 1/4 mg. every 2 weeks. Now I’ve been “free” for 8 years! My doc let me handle it how my body needed it. Goodluck!