alternate day therapy for long term, high dose Prednisone

[babs]

Hi, I have Hashimoto's Encephalopathy, a rare autoimmune neuro-endocrine disorder and have been taking 60 mg a day since jan 06. The many side effects of this drug are very debilitating, I had to stop working in March, mostly because of the side effects of the Prednisone. Last month my Neurologist switched me to 80 mg every other day. This called Alternate Day Therapy, and I am alredy amazed at the changes. If any one is on high dose Prednisone and suffering from the side effects, talk to your doctor about the possibility of this. I can't tell you how much of a difference this is making in my life. :D

[Joey54]

The PDR says it has a "profound effect on every organ system in the body.

I cannot take it for over 3 days at 10-20mg and it reves me up then I have to watch for depression and get myself out of it.

I am sorry you need so much as my stomach also finds it rough to take.

Joey54

[nopain]

I have seen people totally destroyed by steroids.

If you have never sought the care of a Naturopathic Physician it might be time. I know of two patients (one whose face was puffed like a chipmunk after 6 years of Prednisone another who was so weak she came to the clinic I was going to barely able to walk. Both cases took about 3 months and many many long unplesant days with IV Drip therapies. But both were at least 80% improved.

There are not a lot of Naturopathic Physicians, and you may have to travel to see one. Both of the women I knew traveled several states to get to the clinic. They were on their last legs medically. Both were vastly improved.

The combination of diet, natural medicene and direct IV Thereapy made a huge difference. Steriods have a hideous long term effect.

I should also mention that unfortunatly insurance is very unlikely to cover it and it is extremely expensive. What a world we live in.

No Allopathic Physcian (MD) will ever tell you this. And not every Naturopathic Physcian is qualifed to help. But there are those few out there that really know their stuff and have the clients to back it up.

[babs]

Thanks to you both for reading and responding. Believe me the alternate day therapy has made a VERY big difference. :D I have read some nasty case histories of long term Prednisone therapy but I have also read about and talked to Docs who have treated HE and if the steroids don't fix it or you don't get it treated the disease can have very nasty consequences.

[Cry Tears]

I've been on 10mg of Prednisone daily for many years now.
When I try and stop I'm so fatigued I can hardly move. And my joint pain is just too much to bare. I don't give a rip if this is damaging my body.
I'm goiing for quality, not quantity....and the $5,000 I spent seeing one of Portlands best naturopath doctor did zilch for me....'cept releive me of $!
They even missed my B12 deficiency:eek: ...imagine that!
Diet.....lets just say my husband and I practiced the best diet one could ever have been on...we'd been on it for over 5 years when my husband got mouth cancer....and I Crohns and fibromyalgia....so much for that all natural diet!
No oils,no cheeses,mayo, white flour, no meats, no sugars, no refined foods....nothing fried, ever! I sauted my veggies with water! Soy sauce was even Taboo....I used Dr Bronners minerals for my organic brown rice.
We are hoards of raw veggies, fruits and loads of salads...minus the oily dressings. For instance....I made my own salad dressing out of fresh garlic and cashews, with a little lemon.
I am very educated in the natural food cooking...took courses from Weimar Insititute....and my sister was a personal chef for Dr McDougal in St Helena Calif....So I knew what I was doing.
All the hours I spent in the kitchen cutting, slicing, whirring all that natural food....and I could have gone to KFC and eaten something that was really good!
Something went terribly wrong!
Non of the good living worked for us!
Cheryl

[babs]

Hello everyone, I will see my neuro on 11/30 and am very hopefull for her to start reducing the Prednisone. I am still doing way better on the alternate-day-therapy. Hope everyone stays as well as ;) they can.

[Sydney]

I was very interested to find this site where people are using prednisone. I have sufered from chronic pain since 1984. However, in the past few years it is beyond belief as it has increased to the level of excruciating at times and is throughout my entire body. I have severe fibromylagia, Reflex Sympathetic Dystrophy and Meralgia Paresthetica as well as severe full body allodynia. (wow- that's a mouthful of medical problems).
for the past three years since I was hit with the RSD the pain is horrific. It also has made me partially disabled. It is in my back, arms, etc. and I am unable to walk even a block. I just walk around the house and ride a cart in the grocery store. I have taken over 30 pain meds at the h ighest dosages and they do not work. I am polymorphic and do not process them. Thus I must live with this never ending suffering and pain daily. Enough of the wining.
Now, my one doctor gave me a scrip for 5 mg. hydrocortisone 3 times a day. My pain management dr. is very unhappy and said not to take it because of side effects. I am so desperate I am going to try it anyway. What is the difference between hydro. and prednisone?
Also, I saw where someone is taking prednisone for many years and seems OK. Could you relate some of the side effects or can anyone out there tell me there experiences with long term use of this? Sydney

[babs]

Hello Sydney, sorry it has taken me so long to get back to you. Both Prednisone and Hydrocortisone are in a class of drugs called Corticosteroids which are produced in the body by the Adrenal glands, so both different forms of the same thing. They are given to supress inflammation mostly. I am now starting to wean down from 80mg/every other day to 60 and I hope when I see my neuro in Feb that she will drop me to 40mg/every other day. Have you ever heard of 'the flight or fight response'? If not it is an older term meaning that our bodies have the ability to go from 0 60 in the case of an emergency. Adrenaline is made in the adrenal glands and gives us the ability to respond quickly. It also gives you that pumped up feeling. Being on long term steroid therapy is like looking up and seeing the car in front of you has suddenly stopped and you have no where to go, only all the time! Because Adrenaline acts on almost every part of the body the side effects are wide spread. Premature ageing of cells is one thing, fluid retention is another taht I have suffered from, but is fixed with diuretics ( water pills). I gained a lot of weight fast, some fluid but also fat deposits that are characteristic of steroid use, moon face and fat pad on back of neck/shoulders. Also gained alot around the middle! You can get a full list of possible side effects by searching under any of the drug names. Remember we are each so different that our bodies tend to respond to drugs in different ways. I have experience high blood sugar levels, temporary I hope, and have to take antidiabetic meds, muscle weakness, tremors, easy bruising, headaches, muscle and joint aches, fatigue, depression, sleep problems, confusion, muscle twitching etc etc. Sounds awfull I know but my dear husband helped to put it all into perspective when he told me to think of it as 'chemo' to cure cancer. Not real fun to do but better than teh alternative. Hope you have managed to do some research of your own by now. Take care and good luck.

[suzq]

prednisone-that wonder of wonders drug. I have been taking pred at different doses for 14 yrs now for a severe latex allergy. My career (which is lno longer) after 25 yrs was a cert orthodontic asst with national boards. I had to keep taking the pred in order to have skin
I have several health issues which I have had to go on total disability.
I am now into my 6th month of dosing down one half mg every six weeks. So far the pred masked rhuematiod arthritis and diabetes. It will take me approx 6 more months to be off it completly.

It has affected my mental health, my kidneys, liver and who knows what else.

I ended up winning a WC case against my former employers because they refused to remove latex from the office for just one person.

It was also a big factor in my disability case. suzq