Long Term use of Prednisone

SkinCell Forum

General Category => Skin Complaints => Message started by: mike9195 on March 17, 2003, 09:39:55 AM

Title: long-term prednisone use
Post by: mike9195 on March 17, 2003, 09:39:55 AM

Hi,

This is my first post here, so let me introduce myself. My name is Mike and I have eczema. I always had normal skin up until the age of 18 when eczema just TOOK OVER my entire body (over 80% severely covered). I've been through all the standard run-arounds from the dermatologists that everyone goes through, but the bottom line is that nothing works well enough.

Now that I know more about the condition, I can contain about 75% of the eczema through proper cleansing, moisturizing and avoidance of irritants, but I'm still affected badly enough to have a lousy quality of life. I have ProTopic and it helps a little, but not nearly enough.

After dealing with this horrible condition for over two years now, I've come to the conclusion that medicating myself with Prednisone is the only way I can continue. I can't handle the severe itching and horrible skin all the time.

We all know prednisone is the cure-all for auto-immune skin conditions, so I'm wondering what your thoughts are on long-term usage? Whenever I go through a course of Prednisone my skin stays nice for a period of time and slowly but surely deteriorates into misery again.

I'm wondering what a safe schedule and dosage might be for permanent usage? Like two weeks on then two weeks off? One week out of every month? A small dosage every day? I've decided I'm going to take Prednisone forever (even if it kills me eventually) because I can't live like this anymore. Just looking for some thoughts on how to do this as safely as possible.

Mike

Title: Re:long-term prednisone use
Post by: fishs on March 17, 2003, 10:00:31 AM

:hi:

Gidday Mike .

Welcome to the forum. I hope you will enjoy be here with us ..

Sorry to hear of your problems with the eczema.

Re the Prednizone ..

I know that the long term usuage can cause some major side effects . Can promote things like diabetes , kidney and liver problems.. etc.

I would have a chat to the Doc or Derm and ask them to get you all the info and possible side effects of it.

I would maybe look also at the reason or cause of the eczema .. Thats the area I would be looking at. Once you can establish the root cause then you know what you are dealing with and can then look at the possible treatments.

Many things trigger inflamation of the eczema also ..Like the chlorine in water supplies and swimming pools . also many soaps and laundery powders are a problem as well.

Hope that may be of some help to you.

Fish

Title: Re:long-term prednisone use
Post by: Val on March 17, 2003, 05:28:31 PM

Hi Mike,

Firstly welcome to our forum ;D

The drug you call 'Prednisone' we call in the UK 'Prednisolone'. Follow this link, and look down the list for 'Prednisolone Oral'
from that page follow 'Precautions' then 'Side Effects'

http://www.drugdigest.org/DD/DVH/SearchDrugs/1,3929,,00.html?drugName=prednisilone

You will also see on the first page, 'Prednisone' just under Prednisolone, have a look at that as well, although it doesn't explain it in quite the same way.

I have used this drug long term, not just for my skin condition (I have pustular psoriasis), but for other medical conditions I have, including asthma. I have now come to the conclusion that I don't want to use this drug long term at all. As you will see there are lots of side effects associated with it, and I have had many of them. One of the most worrying things is skin thinning, and bruising easily that I have. I also found that after a few weeks on this drug, things would start to creep back, so the dosage had to be increased, then the same thing would happen again. The other thing that really bothered me was the weight that I put on, after 4 years not having the drug, I am still not back to my original weight.

As Fishs, has already said, have a good talk with you doctor or derm, and see what they say. But please read those articles before, so you will be armed with better information.

I wish you well, and hope to get to know you better through these boards. I also hope that your eczema gives you a break soon.

Val :hug:

Title: Re:long-term prednisone use
Post by: Monika on March 17, 2003, 05:36:22 PM

Hi Mike, welcome to the forum! ;D

I have eczema too. I agree with fish - it would really be a wise idea to try and find what is triggering your eczema. It can be certain foods, dust, detergent... so many things. My GP told me "it can be anything" - and since finding something out of "anything" would be really overwhelming ??? she advised that I start with what others in my family are allergic to and work from there.

In my case, the trigger ended up being gluten (wheat, rye, barley and oats) - that led me on the path to finding out I have Dermatitis Herpetiformis (a form of Celiac Disease, which my mom has).

Have you asked your doctor about getting an allergy test? If you don't have any other starting place, that might be helpful. (There are side effects to patch testing, ask your doc about that)

Good luck! :)

- Mon

Title: Re:long-term prednisone use
Post by: mike9195 on March 18, 2003, 09:10:31 AM

Thanks for the replies guys :)

I agree it would be a good idea to attempt to figure out what the allergic triggers are, but I have no health insurance, and it is prohibitively expensive otherwise :(

For now I have to live on Pred until/if I someday get health insurance.

Does anyone believe stress could contribute here? My severe problems began right about the time I became unemployed when my employer went out of business. I've been out of steady work for over two years now, and no doubt it's been a very stressful period.

Mike

Title: Re:long-term prednisone use
Post by: Val on March 18, 2003, 02:42:51 PM

Hi again Mike,

Yes stress is a big factor with any type of skin condition >:( which we hear here, over and over again. ???

Unfortunately, we all seem to get told by the medics, don't stress. Far easier said than done though. Although after saying that, have you tried any of those tapes that are supposed to be good for stress? They do seem to work for some people. The other thing we have found out here, is that what works for one person, may not work for another, even with an identical skin problem.

Sorry to hear that you don't have the medical cover you need. :( Here in the UK, at least we don't have that problem, even though our health service is in a mess just now, we do get eventually to see the derms and doctors, and get treatments, tests etc.

Did you have a look at that site I gave you in my last message, about prednisone? If not, please do have a look, so you know what your dealing with on that front. ;)

:hug:

Title: Re:long-term prednisone use
Post by: mike9195 on March 19, 2003, 08:58:40 AM

Hi Val,

Yes I did look at your link (thank you btw). I found it interesting that the side effects they mentioned seem rather mild compared to what doctors have told me in the past. Oh well, I have no choice regardless for now. Nothing I can do about the stress if that is part of the problem. No job = much stress any way you look at it.

If weight gain and skin thinning were your only side-effects, I'm curious why you do not like Pred long-term? I would take those conditions any day over the misery of my skin problems.

Mike

Title: Re:long-term prednisone use
Post by: Val on March 19, 2003, 11:39:20 AM

Quote from: mike9195 on March 19, 2003, 08:58:40 AM

Hi Mike,
This is just one article on the effects of this drug, copied from:
http://www.med.miami.edu/patients/glossary/art.asp?ArticleKey=810

Quote:

DRUG INTERACTIONS: Prolonged use of prednisolone can depress the ability of body's adrenal glands to produce corticosteroids. Abruptly stopping prednisolone in these individuals can cause symptoms of corticosteroid insufficiency, with accompanying nausea, vomiting and even shock. Therefore, withdrawal of prednisolone is usually accomplished by gradual tapering. Gradually tapering prednisolone not only minimizes the symptoms of corticosteroid insufficiency, it also reduces the risk of an abrupt flare of the disease under treatment.
Prednisolone and other corticosteroids can mask signs of infection and impair the body's natural immune response to infection. Patients on corticosteroids are more susceptible to infections, and can develop more serious infections than healthy individuals. For instance, chicken pox and measles viruses can produce serious and even fatal illnesses in patients on high doses of prednisolone. Live virus vaccines, such as small pox vaccine, should be avoided in patients taking high doses of prednisolone, since even vaccine viruses may cause disease in these patients. Some infectious organisms, such as tuberculosis (TB) and malaria, can remain dormant in a patient for years. Prednisolone and other corticosteroids can reactivate dormant infections in these patients and cause serious illnesses. Patients with dormant TB may require anti-TB medications while undergoing prolonged corticosteroid treatment.
By interfering with the patient's immune response, prednisolone can impede the effectiveness of vaccinations. Prednisolone can also interfere with the tuberculin skin test and cause false negative results in patients with tuberculosis infection.
Prednisolone impairs calcium absorption and new bone formation. Patients on prolonged treatment with prednisolone and other corticosteroids can develop osteoporosis and an increased risk of bone fractures. Supplemental calcium and vitamin D are encouraged to slow this process of bone thinning. In rare individuals, destruction of large joints can occur while undergoing treatment with prednisolone or other corticosteroids. These patients experience severe pain in the involved joints, and can require joints replacements. The reason behind such destruction is not clear.
SIDE EFFECTS: Prednisolone side effects depend on the dose, the duration and the frequency of administration. Short courses of prednisolone are usually well tolerated with few and mild side effects. Long term, high doses of prednisolone will usually produce predictable, and potentially serious side effects. Whenever possible, the lowest effective doses of prednisolone should be used for the shortest possible length of time to minimize side effects. Alternate day dosing can also help reduce side effects.
Side effects of prednisolone and other corticosteroids range from mild annoyances to serious irreversible bodily damages. Side effects include fluid retention, weight gain, high blood pressure, potassium loss, headache, muscle weakness, puffiness of and hair growth on the face, thinning and easy bruising of the skin, glaucoma, cataracts, peptic ulceration, worsening of diabetes, irregular menses, growth retardation in children, convulsions, and psychic disturbances. Psychic disturbances can include depression, euphoria, insomnia, mood swings, personality changes, and even psychotic behavior. The bone and joint complications of corticosteroids are discussed above in Drug Interactions.

Quote:

If weight gain and skin thinning were your only side-effects, I'm curious why you do not like Pred long-term? I would take those conditions any day over the misery of my skin problems.

Mike

Ok, as you're curious I will tell you why.
First of all skin thinning, this is not as mild as it sounds, the slightest knock to any part of my body now, not only causes a deep bruise, it also splits my skin. The bruises take weeks to heal, the splits not only bleed but often get infected and are quite painful. We are not talking about just one or two bruises and splits, we are talking many. Even a firm handshake can cause these to happen, or my grandchildren jumping up on to my knees for a cuddle, or someone catching me with a shopping basket. It also means I have to be careful as to the treatments I now have for my psoriasis.

The weight gain, is not just vanity. Doubling you body weight over a short period of time causes a lot of other problems. Extra strain on your heart, extra strain on your kidneys restricting movement, causing breathing problems, extra strain on all of your bodies joints. When you have asthma, this is even more worrying, also when you already have arthritis.
This drug can also cause osteoporosis, don't be fooled into thinking this is something only women get, as it effects men too and to the same degree. It can also effect the liver.

Coming off of prednisolone (predisnone), for some this can be a problem in it's self, as it was for me. I was on very high doses, to drop even 5 mg, I had to be taken into hospital to be closely monitored, I would get the shakes, have breathing difficulties, get a woozie head, palpitations, sweats and vomiting. These symptoms are not very nice, I can assure you. It took the doctors just a few minutes to put me on a high dose, then higher doses as symptoms creep back, it took me months to get off of them, and all that time, I would start experiencing the symptoms that this drug was meant to cure. Cure it does not do, it in fact masks symptoms, so that the body in theory can heal itself. The feeling of euphoria, is fantastic but not real, the insomnia is a problem in itself. The feeling of being well, is great but again not real. The facial hair growth, the extra weight, the fluid retention, the insomnia, the kidney damage, the skin thinning, the bone problems, these are the realities of long term use of these drugs, and they don't heal themselves when you come off it. I know that for a fact, as I am experiencing them first hand.

You have chosen to stay on this drug for an unlimited time, that is your choice and you have the right to make that choice. You originally asked if anyone knew what the long term usage was, I was trying to give you some insight as to the problems that you may experience.

You may be lucky and only experience a few of them, or none of them, I hope it's the latter. But at least you are now armed with the information, that I wish I had, had before going down that path. So as you see, my reasons are not as simple as you first thought. Although I have psoriasis, it is one of many medical conditions that I have so, no I will not use this drug again, unless I have no other choice to save my life. Even with the misery of the skin problems.

Title: Re:long-term prednisone use
Post by: Nick on March 19, 2003, 12:55:52 PM

Hi Mike,

I'd have to agree with Val on this one.
Skin thinning or Atrophy is a major concern. That's why the use of topical steroids is always done under the srict supervision of a dermatologist or docyor. The onset of Atrophy can leave you and your skin in a state much worse than you would normally expect to suffer with Eczema.

Here's a couple of images that show the effect of Atrophy :

http://www.dermnetnz.org/dna.topical.steroids/info.html

Over-use of steroids can literally strip your skin away from your body and leaves you permanently scarred which is why I now refuse to use topical steroids regardless of how bad I get.

Title: Re:long-term prednisone use
Post by: fishs on March 19, 2003, 07:27:56 PM

Hi there Mike.

In all honesty Mike I must concur with what Val and Nick have stated .

I can understand your position and situation and while not wanting to seem in anyway being a bit negative etc on I personal point of view I would never go on a prednizone course for any length of time.

I feel that after weighing everything up the side effects of this drug far outweigh any benefits . Thats just my personal opinion Mike .

Please feel free to continue to ask questions and I am sure others will offer more .

Fish

Title: Re:long-term prednisone use
Post by: mike9195 on March 20, 2003, 09:37:35 AM

This is good (well in a way) to hear.

Can any of you (especially Val) offer any details regarding the dosages, length of course, etc that caused the bad side effects? I'm kind of in the experimentation phase right now to see how little Prednisone I need to get by and on what type of schedule. For example I'm nearing the end of my self-prescribed course soon, and then I'll test to see how long I can remain off Pred before it becomes unbearable to not resume. The ten day plan is:

50mg
50mg
40mg
40mg
30mg
30mg
20mg (today's dose)
20mg
10mg
10mg

What are your thoughts on how high these doses actually are? Are the side-effects much less serious with shorter courses (like the one above) that allow for sufficient breaks between courses to allow the body recovery time? I've been on Prednisone many times before under doctor supervision, so I'm kind of just modifying prior courses I was on. To date I haven't experienced any side effects other than the insatiable hunger. :-X Val, do you think the weight gain was due to the hunger effect (just plain eating more) or changes to your metabolism?

I'm very grateful for all your replies :hug: What a great forum, I think I'll stick around! Is this a mostly UK forum? I'm jealous of your universal healthcare -- here in the US if you're uninsured (a huge number and rising) and having an immediate emergency you cannot affordably get any care. I'm unable to attempt getting to the bottom of the allergic nature of my eczema because the testing and treatment costs are unbelievable. It really sucks....maybe I should relocate?

Title: Re:long-term prednisone use
Post by: Nick on March 20, 2003, 12:47:26 PM

Hi there Mike.

Your suggestion about steadily reducing the dosage until you find the optimum level of benefit against minimum risk is a really good one. All to often we have a habit of trusting the doctors who give dosages for the "average" person, but we all react differently to drugs and potions, some need more, some need less. :up:

Whilst the forum is operated from the UK it does have a large international following, mainly the USA, Canada and Australia/NZ (They give the best BBQ advice in town ;) )
I'm glad that you feel the forum is helping, that's what we're here for ;D

:bounce:

Title: Re:long-term prednisone use
Post by: Val on March 20, 2003, 02:59:08 PM

Hi again Mike,

As Nick has already said, everyone reacts differently to different drugs and potions. For some a very high dose is needed, whilst for others a low dose is sufficient.

I can only really speak for myself, although I do know of others that have experienced problem's and some who are on a "holding dose" and have been for many years.

On the first and second times I went on them, it was for Crohns disease not for my skin. My doses were much higher than yours, as high as 400mg daily. Because of being on such a high dose, it took me longer to come off of them, well over a year. The last time was for my asthma, and I was only on 100mg, but had to stay in hospital till they got me down to 10mg, then dropping 2.5mg every 5 day's. I have never been on oral steroids for my skin, because I refuse, although I have used topical's for short periods of time only.

The fact that you are starting on relatively low doses may be of help in the side effects stakes. Maybe not, it depends on your own body. Over here, they tend to keep you on the higher dose for 1 week before weaning down. This is so that the drug gets a good hold of the ailment you're using them for, then they usually wean you down every 4 or 5 days. This is to see how low you can go before the condition will start up again, as 2 day's is not always long enough to get the true picture, as your body has a build up of the previous doses.

Now before you start thinking, ah well her doses were so much higher than mine, that’s why she has the side effects, read on. I have and do still know people that have had a lot of side effect on that type of dosage, even lower ones. My own mother has had 2 courses of predisone, the highest dose she was on, was 20mg, the longest time was 3 weeks. She can wean them down without any problem, but unfortunately, she also has severe skin thinning now, much more badly than mine. Her bruising is also much deeper. I also know other people so effected as well. On the brighter side, I also have friends that have been on low dosage without any problems. Some find that 2.5mg is their holding dose and some 5mg, so I would suggest that you try going down by 5mg from your 20mg, then once down to 5mg try the 2.5mg, you may get a better result. I would also recommend that if is at all possible, visit your doctor and discuss it with them. I have taken on board that you don't have medical insurance, and know that this will cost you, but surely a one off visit would be worth it. Also when you are on this type of drug, it should be noted on your records, if for any reason you had to be taken into hospital, they do need to know you're on prednisone. This drug can affect other treatments they may give, especially due to an accident. Also you should have some blood tests done at regular intervals, about every 6 months at least, this will show any damage to kidneys etc., and this needs to be caught early.

My weight gain had nothing to do with eating more, as both times I was put on them for my Crohns disease, I wasn't eating at all and only drinking sips of water. Yet I still started gaining weight from the onset of taking them. Prednisone has never given me an appetite, so yes it did change my metabolism.

I needed to find my triggers for my Crohns, I didn't do the allergy test's as such either. I eliminated various food from my diet for a 10 day - 2 week period, then slowly re-introduced them. This way costs nothing and you do get a very good idea what your triggers are. Just do this with 1 or 2 foods at a time, such as cut out all bread and cakes first. Then after about 10 day's if your skin is the same as when you first stopped them (or a little better) try some bread for a few days, then add some cake and see how your skin reacts. The same goes for meat and vegetables. Remember there are people that have a problem with red meat but not white, or vice versa. Also try the same regarding sweet stuff i.e. chocolate.

I hope this information at least answers some of your questions.

Very pleased to hear that you like our forum, ;D hope to see you on some of the other boards soon. Bar's a good one ;)
Take care.

Val
:hug:

Title: Re:long-term prednisone use
Post by: self-medicat0r on April 16, 2003, 09:43:58 PM

Hey Mike. I'm a new user here, also. I'm sympathetic to your situation because I'm a long-time corticosteroid user too. There have been periods in my life where I've literally lived by the holy tube of ointment - be it Ultravate, Betamethasone, or garden-variety hydrocortisone. Plenty of times in my life (I'm going on 26) things have just plain gotten out of hand. I was forced to turn to the almighty Prednisone to clear things up.

I know it's got bad side effects. We all know it's just not a good idea unless absolutely necessary. But I figure if I can zap myself with a quick run of Prednisone just to get things under control every now and again, it 'll stop me from constantly using a weaker steroid (which, in the long run, is not the most attractive option either). Having said that, I have no plans whatever to use it regularly for the rest of my life. I also sympathetically acknowledge that my condition is probably not nearly as bad as yours sounds.

I just wanted to pass along some non-steroid things I've been experimenting with recently. Many of you may know about this stuff already. I've been reading up on factors that good skin health depends upon. In doing so, I've discovered the essential fatty acids. Specifically, I think they call them GLA's (gamma-linoleic acids). I've been using supplements which can be ingested or applied to the skin. There are many companies out there that make them - Borage Oil, Flax Seed Oil, Evening Primrose Oil, etc. The Borage Oil seems to hold the most promise for people like us.

Anyway, it may be worth checking out. Any search on the Internet will give you a number of manufacturers. I sincerely hope you find some comfort somewhere - even if it has to be from a steroid. I have to say that it warms my heart to see people getting together and sharing information like this. This is truly the most noble aspiration of a tool like the Internet. I wish all of you comfort and strength.

Joe

Title: Re:long-term prednisone use
Post by: SweetMom on April 23, 2003, 09:08:57 AM

Quote from: mike9195 on March 20, 2003, 09:37:35 AM

Sorry I am so late to reply- I just saw this post.
:hi:

Quote from: mike9195 on March 20, 2003, 09:37:35 AM

:hi: Mikewelcome to the forum :).Since your not working regularly perhaps u could apply for medicaid for now.That would defintley get you to a GP,but also big well known cllinics,also tend to accept medicaid for thier specialists.
I have been off and on prednisone throughout my 20's and 30's,to get Crohns disease under control,ofcourse this was only a temporary fix,and after 2 months off I was back on again.I started at 40mlg,became extremley hyper,short tempered,tons of energy,but the wrong kind.I really did not realize all the mood swings temper,etc at the time.The Dr neglected to explain alot about this drug to me.After a week he started taking me down-10 mlg the first week,I cried all night,planning my suicide??I was living and engaged to an old boyfriend and I kept telling him I didn't know what was wrong- I was very happy?I got up the nerve to tell my Dr,he casually said"oh,your sensitive,you came crashing down to fast,we have to lower you 5 mlgs a week.After a month,I gained 30lbs,it increases your fat cells,and creates water retention.I still went through mood swings,and wouldn't go out due to my weight gain- the depresssion was terrible,and than it was alll this energy,still not going out,but one clean home.This was all being done to aviod surgeries,which I ended up having anyway.
I have not been on prednisone for years now,but at age 35 was diagnosed with osteoporis,it didn't hurt than.Now I am 43,I have had severe osteoporosis for the past few years- as a direct result from all the prednisone.You could not tell to see me- thank-god,but my spine is permanently curved,I have very little strength,lifting a galon of milk for me is hell.If I stub my toe,I break it.The pain is so severe in my back,if I try to force it straight,or just have a few bad days,I go into fits of vometing,and dizziness,and must take valium as its the only drug I do not have to eat with,it just knocks me out,and its the only answer.The pain shoots from my back into my neck often causing migraines.My balance is off,and carrying groceries in,I have often come way too close to falling down all the stairs we have,as I am stressing my back.I drink lots of milk,it does not help.I cannot take the strong scripts for calcium and bones as they mess up your stomach so severly.Mike- I am not going to get better,and you know something,this is even more painful than the crohns disease it orginally helped.Please think about this,is it worth another disease like this one for you?Men can get this disease,especially like myself from steriods.
I know you think you found a fix,and you do sound like your on somewhat of a high- not stoned,but a steriod high,you need to lower your steriods according to what your body can take,or you could come crashing down into serious depression.You also need to be aware of your temper,can be dangerous in traffic-driving.Sleep is also very important.Consider getting off them-slowly though.
Even if you believe that none of these mood swings are happening,please believe osteoporosis is real and think about what I have shared with you,please.I can put on make up,5inch heels that do hurt,and live in constant pain,and still smile,but I have learned to adapt- is this what you want?
SweetMom :bighug: