Long term prednisone usage
 

Anyone have any thoughts on whether there is a low dosage level of Prednisone that would be safe for very long term use. I've done well on 15mg every other day, not so good below that and I'm wondering how long I can keep going at this dosage. No significant side effects that I'm aware of while on the dosage level.

I'd prefer not to have to take any Prednisone, but the alternative at this point would be Immuran. Prednisone seems preferable right now, but not if long term use at this dosage will have harmful effects.

Thanks

I wish I knew the answer to this {I bet Annie or Alice will} I used to be on high dosage years ago and it has effected my vision. I can no longer take pred but thats OK, my Dr. is against using it anyway.

Have you spoken with your Dr about this? He/she would be able to answer it.

I have gotten different answers from different docs.

Have you spoken with your Dr about this? He/she would be able to answer it.[/QUOTE]

I think my neuro once told me that below 10 mg Pred per day, there was no side effects...
Maurice.

It depends what you consider low. A replacement dose of cortisone is about 5mg of Prednisolone a day. Anything above this leads to side effects long term. A dose about 5mg overrides the body's adrenals and will eventually atrophy them to stop working, so that you are reliant and at the mercy of cortisone tablets to stay alive for the rest of your life ... and need to understand how to manage your newly developed Addisons Disease and stress dose for sickness, surgery,broken legs etc. Its not a good medication but sometimes it is necessary and like all such things the good must outweigh the bad before a decision can be made.

Unrelated to my MG, I had Cushing's (which is too much cortisol, the equivalent of too much prednisone) and despite measures to control it like pituitary surgery, ended up having my adrenals removed - so I must take steroid replacements for life. It was when my adrenals when out then we discovered to my dismay that I must have been self-treating for MG, as it was then my MG roared to the forefront. But I will not and cannot take steroids due to the damage that has already been done to my body from the steroids.

Now there is a point where your body will *use* the steroid and then it will not be damaged. You will know that by always being able to sleep, never getting cataracts, your bones being fine etc. But Pred has a longer half life than an entire day - being up to 36 hours depending on the body (everyone uses a steroid differently) and does not go into effect right away.

I would keep an eye on the side effects as they can be sneaky and well, not all seen. It may be something to come off the 15mg - cortisol weans can be painful. Just be sure to take care of your bones extra careful while on the med.

Is anyone here on alternate day therapy? I'm currently at 50/10...Will be at 50/0 in two weeks....Does this reduce the side-effects? Also, when I taper from alternate day, will I have to resume prednisone everyday, just at a lower dosage? Or do people normally taper just from the prednisone day, and continue to not take prednisone on the second day? Sorry, kinda confusing, I know...lol

Long term prednisone usage
 

Hi Nicky,
I am on alternate day therapy. I have gone from 60/0 to 40/0 which I started Fri. So far I am not seeing any difference in side effects. I still have trouble sleeping and my appetite is huge. I don't think you will need to take it everyday since you are already on an alternate day therapy. My Dr. told me the alternate day therapy reduces the side effects as opposed to everyday.
Kendra

Thanks, Kendra...

What is the time interval between tapers? Is your doctor going down by 10mgs monthly, or biweekly? My doc. has not suggested that I do any more tapering once I get to 50/0, but I'm thinking of sneakilly doing it on my own (muahahaha:wink:)- carefully, that is, though:p...Just 'cause I'm so sick of this med.. I'm not going to start until I see the second neuro. for the second opinion, but I want to make sure I do it safely if I decide to do it...

You know...I feel completely delusional about some of the side-effects...I thought that I hadn't gained weight, at least on my 'body.' Actually, according to the scale, I haven't- I'm still the same weight (about 135 lbs), but I saw some other pics. from Christmas that my aunt took, and lord have mercy, I was trying to find Hootie in the pics. 'cause the blowfish was definately in town...

I actually thought that there was something wrong with the pics. because I was the only one in some of them, but when I saw the others with my other family members in them too, I realized that there was nothing wrong with the pics. or camera...lol...I look straight-up weird!

Anyway, I guess I have the lipodystrophy because my trunk, face, arms and neck look massive, but my legs look thin...I also have a ferocious case of acne...Prednisone sucks, I will say it again! lol

Nicky

Long term prednisone usage
 

Nicky,
My Dr. had drop from 60 to 50 for 2 weeks then I dropped to 40. He wants me to stay there until I see him in April but I'm like you and plan to try going down on my own. If things stay ok at 40 I will drop down to 30 March 1.

Oh my gosh I know what you mean about the scales saying one thing but looking at yourself and wondering what has happened!!! My face is starting to fill out and my arms and stomach. According to the scales I have gained about 9 pounds but it feels like 25. I HATE it!!! YES pred sucks. I went to my chiropractor today and he gave me a good talking to about how dangerous this medicine is. He swears it is poison. I feel so much better after getting an adjustment today but am now more scared than ever about the damage this med is doing. He suggested going on a gluten free/dairy free diet at least for a few months to give my body some time to kind of work on healing itself. As bad as I want totally off the pred I don't want to take cell cept or Imuran either because they have serious risks also. I don't know what I'm going to do if my symptoms come back like they were before. I am going to get serious about changing the way I eat and exercising regularly. I take several vitamin supplements too. I figure anything is worth a try if it will help me feel better. How are your symptoms from tapering? Are you staying pretty level?
Kendra

Kendra,

My sx still get bad, but that's how it's always been, all throughout this prednisone-period...So I feel like tapering from the pred. wont make much difference...I feel like it hasn't ever really helped...I totally relate to your not wanting to take Imuran/Cellcept...I'm supposed to have already started Imuran, but I haven't...I want to see what this other MG specialist will say, then I'll make my decision...

The only thing that seems to have gotten worse is my breathing (which is a big deal, I know)...But I don't think that's from the taper...I think that there is actually something wrong with my lungs...Ever since I had my sternotomy, I've had intermitten wheezing and really bad GERD. I think that the acid might actually be leaking into my lungs sometimes, it's so bad...

On that note, I was trolling around the ALS forums (i used to be a member when I thought I had ALS) and I found that a lot of them are taking N-acetylcysteine for their breathing...They swear by it...It's apparently also very good for anyone with lung problems (COPD, emphysema, interstitial lung disease, etc.)...So I ordered this effervescent type from PharmaNac, and I just started it last night...It helped with my phlegm a lot...It's 900mgs, twice a day...You dissolve it in water or juice...It's a precurser to the antioxidant glutithione...I will let you know how my progress is going on this as I know that you have breathing issues too...

Btw, how are your breathing issues? Is the ILD clearing up at all since stopping that med.?

Ttys!
Nicky

Long term prednisone usage
 

Nicky,
I hate that the pred didn't help you but at least that makes the decision to come off of it easier. When I first started it I felt like my old self but after a couple of months the side effects started surfacing and it didn't seem like I felt so good anymore as much as I felt like I was running like the Energizer bunny even when my body was exhausted! I think your smart to get a second opinion before starting the Imuran. My Dr said if my symptoms come back we will have to start some sort of immunosuppesant too but I sooo don't want to do that. My biggest issue is that I am starting to notice my eyelid is drooping again when I am tired. When I was on 60mg of pred that totally went away. I also notice my weakness is worse but so far the Mestinon takes care of that.

That is very scary about the wheezing and GERD. I was having some major problems with those things too but that has gotten better since stopping the Agrylin.

Yes please keep me posted on the effervesent you ordered. I will definitely consider getting that if you see improvement. I haven't seen alot of improvement since stopping the Agrylin except that I think my breathing is better throughout the day but gets worse by evening. It is a weird feeling like my rib cage area feels so weak and sometimes it feels like it is being squeezed. I am still hoping as time goes by I will see more improvement. Talk to you later.
Kendra