[JayJayinIN]

Hi everyone,
Just got back from my Rhuemy appt. and he has suggested I start back on the Predisone for a longer time or try Imuran. Thanks to this site and reading about the experiences some of you have had with the Imuran, I opted for the Predisone.
He wants me to try and do the lowest dosage possible that will eliminate my symptoms...5 to 10mg. daily. In March that dosage seemed to do well for me. I was only on it for 3 weeks.
My question is what kind of side effects have some of you seen from long term usage of the Predisone? I am just hoping I won't become big, round faced, hairy, emotional, eating machine in 3 months time. But then if I'm feeling good it may be worth it!
Thanks,
JJ

 

[Maia]

For most people, the moon face comes about within a week when on much higher doses of prednisone (maybe 20mg). From my personal experience I don't notice too much of an increased appetite or inability to sleep or "rage" type feelings while on 10mg or less. The other risk to consider is bone loss due to long term prednisone. You may want to have a DEXA scan done to see where you are at now & then repeat it periodically if you do stay on prednisone long term.

I was on about 10-15mg a day for 3 months time and just gained a little weight and really didn't have any other symptoms/side effects that I noticed at least.

 

[Jirel]

It really depends, most people can take 5 - 10 mg with (I think) little side effects. I've been taking prednisolone for about 3 - 4 years always within the 4 - 12 mg range. That version is supposed to have fewer side effects than the prednisone. I have no emotional reaction to it. I also have not noticed being more hairy (I already have hair on my face). However, I HAVE had my face and throat become rather round. Most of my 'regular/real' t-shirts have had the neck cut out of them. The ones made specifically for women with losser necks have not. I gained about 10 - 20 lbs when I first got on it, but I have lost most of that now.

So I guess its one of those Your Milage May Vary situations.

 

[lazylegs]

Hi JJ,

On 5 mgs I do great. Taking 10 mgs increases the weight slightly. Anything above 10 and I am all those things in vary degrees. The most critical side effect for me has been Osteoporosis. That didn't happen overnight though. I have been diagnosed for 20 years.

Good luck with the Prednisone. Hopefully it will bring you back to your normal range.

Take care,
Lazylegs

 

[reisha]

I've been on 5-10mgs pred since 2004.it makes me extremely hungry(but I am very thin) it gave me a slightly rounder face, a double chin and a pot belly, sleepy, I have no problems falling or staying asleep, emotional and hairy, which is not all bad cuz my eyelash and eyebrows grew! this is on 5mgs though, anything more than 5mgs and the symptoms get worse and I start to get acne on my face, back and chest. I take calcium supplements everÿday for the bone loss it causec, don't know if that actually helps though. And I think it makes my legs and muscles thin and weak.

 

[raggedyann1]

JJ,

I don't mean to scare you but I hope this additional information will help you understand Cortisteroids a little better. Imuran is in a class of medications that are referred to as Steroid Sparing Drugs. The long term use has fewer severe side effects than steroids do. However I was on long term Prednisone for 7 years or so before my remission and I was on them for 2.5 years after my remission before I was totally weaned off of them. I have facial hair that continues to grow and I get instant moonface now whenever I take Prednisone short term. My bone scans have come back normal so at least I seem to have skipped long term bone issues.

A word of caution about taking what you read here being the normal experience for most Lupus patients. The average lupus patient has no problem with Imuran or Methotrexate and are very busy leading their lives. They rarely join let alone post on Internet Message Boards. Most of our members fall in 3 categories; The sicker end of the spectrum, newly diagnosed or not yet diagnosed.

The truth is that there are more serious long term side effects from Prednisone when compared to Imuran. We have one member here (hasn't posted in years) who has had most of her bones in her body break from long term prednisone. Her experience is not common but it can happen. If you are taking 7.5mg or less you are less likely to have any severe long term problems. Here is a brief list of common side effects from our main page.

Common side effects - Increased appetite, indigestion, nervousness, insomnia, greater susceptibility to infections, increased blood pressure, slowed wound healing, weight gain, easy bruising, fluid retention.​

Here is the page with the general information on Prednisone. http://www.uklupus.co.uk/drug19.html

Here is one more link to a more extensive discussion and list of possible side effects. http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601102.html

take care,
Karen

 

[flutterbye]

Agrees with Karen.

With long term steroid use, I guess at around 10-20mgs, my experience was mad appetite, weight gain (7 stone, can't put that into metric sorry) moon face, insomnia, mood swings, hump in the middle of shoulder blades, acne, hair loss on my head (which could also have been attributed to active lupus), oh and a moustache! (where I could have done without hair)

If you are going to take steroids long term, then you should be taking a med to protect your bones, very sorry can't think what it is called, and be looking at having bone density scans.

There are very good reasons why people see steroids as a life saving medicine, but also as the work of the devil!

The same reasons why docs want us on as little as possible for as short a time as possible, she says having recently had 3 grams infused into her!

In all honesty I would go back and look at the information you have with regards to the two options, I am so sorry if this is not what you want to hear, and if you decide to go down the pred route just be informed.

Oh and it can sometimes be a long process to find the steroid sparing drup which will benefit you, there are options available. Should probably add that my long term steroid use was only untill they found the steroid sparing drug that worked for me, and that I could not have functioned without it, despite two attempts at cold turkey when so fed up with what it brought, (never a good idea)


Very best wishes with whatever you decide to do. xx

 

[Jnp01]

I've been on prednisone for 5 years & usually have a 20mg stint then taper down to 5mg. I can't go any lower. My Dr did prescribed an antibiotic (doxycycline monohydrate) which sometimes helps with inflammation when reducing prednisone but it didn't help me. I ended back up on the higher dose again. I've put on heaps of weight & feel bloated the entire time & my bone density test isn't tops. Having said all that - the aches & pains disappear as soon as I'm on the higher dose. Damned if I do & damned if I don't. I'm probably not a good advocate for prednisone because I'm sick of the side affects. Best of luck...my 2 year old has a pen so I must be off.

 

[flutterbye]

Hi again

I am sorry I didn't mean to sound so anti-steroids, those are just my experience, and I should have said that everyone and their treatment is different.

Steroids were widely used until the side effects were known, and I guess I think your rheumatologist should spell out the benefits and disbenefits (I know that's not a real word!) of each treatment he is offering you, I guess what I mean is it's about making an informed choice.

Anyway I just wanted to clarify what I said, I am sure my time on oral steroids was miserable because the benefits didn't outweigh the negatives in that they didn't get my lupus under control, it was a stop-gap till the right treatment was found.

I still very much know that steroids can be beneficial, for me they help most when I am flaring, either a big burst of oral or even better a few infusions. Also I am sure that they are beneficial for lots of people.

I guess I just don't want you to discount a treatment that could work well for you, without the down sides of long term steroids. I do apologise if I made a hash of my first reply, and if this one aint much better then am sorry about that to!

Much best wishes to you xxxx

 

[Lily]

Hi there,

I have to agree that you need to read all available information you have on both, not just accounts of those here who had problems with Imuran.

There are many here who do great on Imuran and I am one of them. I don't do great on steroids however. I get diabetes type symptoms from as little as 5mg over two weeks- crazy I know, but that will show you how individual we are! If I take higher doses I get psychosis. What suited me best and worked well were very high doses over a day or two for specific problems. My doc won't even do that now, he said if I get on it I will never get off it this time.

A well informed patient makes wise choices, but really your doctor should have gone through the pros and cons of both with you. That's what he is there for.

love
Lily

 

[Katharine]

Hi there,

I just wanted to add my two cents worth. Although I am also on longer term prednisolone (but for different reasons), I have had no trouble at all with imuran and it has helped my disease activity a great deal. If I could choose, I'd far rather the imuran to the prednisolone and my rheumy originally put me on imuran hoping to be able to decrease or eliminate pred. Unfortunately I also have a myositis overlap and it is that that requires the prednisolone.

Katharine

 

[sam101360]

Hi:

Just to add my 2 cents...I am on CellCept and they added 5mg of Prendisolone a day. I feel like I have met my hero...LOL

My Dr already decided to increase my CellCept and reduce the steroids...I asked (with a very sad face) I feel so very good with this mix!

He responded...Bone Loss (osteoperosis), heart disease, weight gain, damage to teeth, High Blood Pressure,....so on....Not all are probable but any are possible.

CellCept while it has a plethora of side effects is still safer than long term steroid use.

In the 4 months I have been on 5mg I have gained 7 pounds. I a on Fossomax for the bone loss.

I think you should as everyone else said...examine your options and risks carefully.

Stephanie

 

[JayJayinIN]

Thanks everyone for your replies. As one of you said, this all seems like a darned if you do and darned if you don't situation. The drugs that help make you feel better will also eventually hurt you. I am scheduled to see the Dr. again in 2 months, so I can reconsider my options again then. Very glad to hear that some of you have had good luck with the Imuran.
JJ

 

[Raglet]

Definitely try imuran first - many people do really well on it, and remember, people are more likely to post on this board if they are having a problem with something than if it is all going well.

So we hear far more about the problems than the success stories. Personally I would try imuran first, it is much better for you.

cheers

raglet

 

[elma]

Hi JJ

I am new to the site. I have been on prednisone since i was diagnosed. I started on 30mg daily am now down to 20mg. have been lower, but then the lupus flares up again. Moonface, swollen abdomen and terrible rage episodes is my daily agony to live with. My doctor told me straight when i complained - do you want to be thin and sick or fat and healthy. Not much choices in that!

At the end of the day it is your choice, after weighing all the pro's and con's and all the medical benefits and disadvantages. there will always be side effects - on any medication, we must just learn to live and cope with it. Till the day there is a cure for lupus.

all the best
elma

 

[Reggie]

I personally think Imuran is a better and safer choice than prednisone for long term usage. I have taken both in large doses in the past and have little or no issues with Imuran.

However, I have been on high dose steriods for about a year and and a half
by this I mean 60-70mg a day orally and weekly infusions of 1000mg.
While this drug has problerly saved my life, the side effects were bad.
Huge weight gain, bloating, excess facial hair. My bones are effected the most I loss about 15% of my bone density despite taking calcium and vitimans.

I broke rib bones by coughing.:worried:

Small doses of prednisone are fine and I would encourage you to take any medication you feel you need to get better.

Keep well Peta

 

[marbiegreen]

This is interesting reading. I have been on 5mg or more of Prednisone for 23 years. I have had all the side effects when I go higher than 5mg. I am still functional on it though. I am also on Imuran! I was never given a choice of one or the other. I am on 100 mg of Imuran. Now I have to go find out why some people are given a choice and why I am on both!! Keep an eye on your bones

 

[AmandaB]

Hi JJ,

I did chuckle when I read your post - I was in the process of shovelling my lunch down!!!

I have been on Pred for 7 years now at varying doses dependant on my health. I took Imuran for a very short period about 2 years ago to try to assist in weaning me off the Pred. This was because (and I'm sure this is an individual thing rather than the norm) the Pred caused my tendons to become inflammed which resulted in both my knees dislocating (at the same time) which in turn ruptured the patella tendon in each knee. At the same time, the tendon on my index finger also ruptured leaving me pretty useless!!

I am currently working my way back down to 5mgs (currently at 8mgs) and take Azathiaprine as well as having had a couple of doses of Ritixumab.

From my experience of reading and posting on the board over the last few years, the medication along with the symptoms of Lupus can vary a great deal from person to person. I would maybe suggest keeping a diary of your meds, their doses and how you are feeling to maybe make an informed choice that is right for you. You could also use this when attending Dr's appointments to enable the Dr to make an informed choice of treatment for you.

Hope this helps.

Amanda

 

[Luscinda]

Hi, I´ve been on 5 mg of prednisolone for the last three and a half years. Unfortunately, I think I get all the side effects that I am not supposed to get on such a low dose .

I´m eternally hungry, I´ve put on 8 kg since I was diagnosed and I find it incredibly hard to lose weight even if I eat next to nothing (I normally eat very healthily although I have to say I do like sweets...), I have a moon face, my mood changes very often and everyday I get my "five minutes of madness", as my dear husband calls it (which, incidentally, most days last more than five minutes).

Am I the only one getting side effects on 5 mg?:sad:

 

[marbiegreen]

I don't think you are the only one getting side effects on the 5 mg. I have been on 5 mg or higher for 23 years. I also take 100 mg of Imuran. I am bloated, cranky and phsychotic and I blame everything on the Prednisone! I really feel that the side effects are definitly worth the benefits of being on the drug. When I first went on it, all the side effects were explained to me in detail and I was horrified! It took me a while to get used to it but at that time the alternative was death. I met my husband on 40 mg of Prednisone and I was moon faced and bloated and he loved me (and still does) anyway. For me Prednisone is my lifesaver and a convenient excuse for getting out of things or gaining a little weight!!