prednisone

[VikingKitty]

Hi,

I'm on my 3 flare this year and have never been on DMDs or have had an IV of steroids....I called my Dr. to see if he would prescribe oral prednisone...he is to call me tomorrow.

Has anyone had any experience with taking oral prednisone..like, how long did the Dr. have you on it, did it help, etc.??

[JerryD]

I have been taking hydrocortisone tablets in 5 mg doses up to 20mgs every day for a few years by doctors prescription. It is supposed to help me with daily energy. i just don't know.
If you are OK with your flares and you don't take anything for them, how do you deal with the flares? Don't you think there is something happening in your CNS that needs some medical intervention?

[VikingKitty]

Jerry,

I have dealt with my flares by just waiting them out.

I heard back from the Dr.'s office today and they said that my recent head cold probably just caused a pseudoflare...hopefully this is what is happening. As far as something happening in my CNS..there is obviously inflammation. That's why I wanted to try the prednisone. After 3 times this year having a flare or pseudoflare or whatever, I'm losing my patience for waiting it out weeks and weeks for symptoms to go away.

The doc wanted me to start Copaxone back in July but I have currently decided not to because of side effects. Again, is it really going to cut back on flares?

[Cat Mom]

Kitty, I'm not sure that waiting them out is a good idea, especially if you have obvious inflammation. That's one of the things (probably the main thing) that IV steroids (Solumedrol) or oral prednisone does to help a flare.

Re COpaxone, injection site itch is the worst side effect. I'm biased as I have been on it since Aug 2007 with only 2 steroid-worthy flares, Jan 2008 and Jan 2009. For the 2 years before it was flare after flare after flare. Personally, it did cut down on flares. Do a little research and you'll see it's not as scary as the others.

Pls let us know how you're doing.

[Redwings]

Hi VikingKitty:
Along with the good that steroids do, they also have their own bad side effects. So the goal for ANY inflammatory disease -- whether lupus, RA, MS, NMO, chronic uveitis, whatever -- is to get the patient onto some other disease modifying drug and OFF of steroids whenever possible. Sometimes it isn't possible, but the protocols favor other medications first, or at least in conjunction with steroids, with the goal of reducing or eliminating the steroid. In addition, actual symptom treatment meds are used when indicated.

Compare the relatively mild side effects of Copaxone to the diabetes, osteoporosis, bone death, glaucoma, cataracts, etc. that steroids can cause. If you have to ask whether Copaxone actually reduces flares, you haven't done your homework properly, and you're acting out of fear instead of knowledge. A rational person is more concerned about diabetes, osteoporosis, bone death, glaucoma, cataracts, etc. that about the few side effects of Copaxone.

MS is an inflammatory disease. While high-dose steroids are used to treat acute relapses, it isn't standard procedure to treat with continuous low-dose steroids instead of a DMD. Frankly, that's 1960's medicine.

Low-dose prednisone is too weak and wimpy to affect an actual relapse, and it won't even have the short-term benefit that high-dose steroids have shown in early MS. At best, it might make someone with long-standing symptoms feel better for awhile. And the danger there is that the steroid starts being misused -- yea, abused -- as a feel-better, symptom treatment med. In the meantime, the inflammation isn't being controlled but the risks and damage of the steroid starts to accrue for little benefit. The unfortunate part of this is that doctors, particularly neurologists who haven't had much experience with steroids, go right along with it because it makes the patient happy and gets them out of the office.

This may sound harsh, but of course you have inflammation and symptoms -- you have untreated MS. Low dose prednisone might make you feel better for awhile (or it might make you feel worse, because steroid side effects can be unpleasant). But what's your plan for getting off the steroids? And when you finish your steroids and the symptoms come back in a few weeks (and they very well might in untreated MS), what are you going to do then? The only option you've given yourself is 1960's technology.

Some people don't take a DMD, and some don't treat flares. Some flares aren't serious enough to justify treatment with steroids. And that's all fine as long as the action is a choice and not a reaction borne of ignorance and fear.

It's important that you don't mistake the fact that you don't know what's going to happen with prednisone with thinking that no one knows what's going to happen. Corticosteroids have been around for decades and they're very well understood. 1960's medicine is fine if you're clear about what you're doing and what you're trying to accomplish. The most important step is to determine whether you're having an actual flare, typical chronic underlying inflammation (with symptoms from existing damage that might be better treated with a symptom management med) and/or a pseudoflare. Steroids are of no benefit for pseudoflares.

The good news here is that a round of low-dose prednisone is probably not going to hurt you. It might buy you a couple of weeks to feel better and do your homework about contemporary treatment options, which now include a couple of oral medications.

ALL medications have side effects. It's our job as patients to educate ourselves about them and then make realistic choices about the trade-offs.

[newbie but goodie]

I urge you to reconsider Copaxone. It does not have the yucky flu-like side effects of the other CRABs and none of the weird brain tumor or whatever side effects of the drip and oral. I was Dx in Nov 2011 in a MEGA flare, had been flaring (is that a word??) three to four times a year for about 3 years (long story of woe and misdiagnoses). Started Copaxone in Jan and haven't had a flare since (knock on wood). So, even if I go into a flare now my status is considerably improved.

In Dec of 2011 I also did a round of oral steroids but they were the same mega dose as a person who does the IV, NOT a dose pack or other inconsequential amount. I took 25 pills a day, 50 mgs each for 5 days. Felt like an emotional, overeating lunatic; got sick, got antibiotics, then felt like a million bucks.

I guess what I'm trying to say is that there is a place in our treatments for both steroids and DMDs but they serve different purposes. You can "treat" a flare with roids but to try to avoid both flares and roids you need DMDs (IMHO).

Why not give Copaxone a shot? If you don't like it and stop, you are not worse off than when you weren't taking anything. And BG12 may be right around the corner (fingers crossed), so the Cop might only be for a short time.

[VikingKitty]

Compare the relatively mild side effects of Copaxone to the diabetes, osteoporosis, bone death, glaucoma, cataracts, etc. that steroids can cause. If you have to ask whether Copaxone actually reduces flares, you haven't done your homework properly, and you're acting out of fear instead of knowledge.

I have done research on Copaxone and from just some of the things I've read from the following website: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000225/

It makes me fearful, yes --

You may experience the following symptoms: flushing, chest pain, pounding heartbeat, anxiety, trouble breathing, closing of the throat, and hives. This reaction is most likely to occur several months into your treatment, but may happen at any time

Glatiramer may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

pain, redness, swelling, itching, or lump in the place where you injected glatiramer

weakness

flushing

depression

abnormal dreams

pain in the back, neck, or any other part of the body

severe headache

loss of appetite

diarrhea

nausea

vomiting

weight gain

on and on...so what side effects have you who are on Copaxone experienced?

[lilly.hewlett]

When I was on Copxone, I didnt experience most of what is noted there. I had 1 IPIR (chest, tightening, difficulty breathing etc) which lasted for 20 mins. Most people dont have those often. If you do, perhaps you might be allergic. I did get injection site reactions which were gone within 2 days if I did get them. I did also eventually get small lumps in my thighs and arms, but they were a small price to pay for feeling pretty good on Copaxone for the past 5 years.

Depression is NOT a side effect of Copaxone. The interferons yes, copaxone no. That is the only reason I chose it in the beginning. I dont know if they have updated their site to include it, but I never had an issue. The one person I know who said they had a issue was reminded (with the help of a SS nurse) that she voluntarily decreased her anti-depressants. Copaxone was not the culprit. I did not gain weight on Copaxone - one of my other issues in the beginning. I started copaxone being heavier than I am now when I am getting off of it.
I wish I did not have to. My MS is causing issues and I stayed on the Copaxone even longer than my dr wanted me to, because it has been so good to me side effects wise. I wish you the best of luck in whatever you choose to do.

[MarkLavelle]

...so what side effects have you who are on Copaxone experienced?

Absolutely none.

If you're going to let the word "may" scare you so much, you owe it to yourself to dig deeper and find out the actual incidence rates of those side effects. And even the more common side effects don't happen to everyone (or even 50%)...

There's only one way to find out whether you will have side effects from Copaxone: try it! You can always quit if you have problems.

[lilly.hewlett]

In Dec of 2011 I also did a round of oral steroids but they were the same mega dose as a person who does the IV, NOT a dose pack or other inconsequential amount. I took 25 pills a day, 50 mgs each for 5 days. Felt like an emotional, overeating lunatic; got sick, got antibiotics, then felt like a million bucks.

How did you get your dr to agree to the super mega dose of oral prednisone?
You said you got sick - but felt like a million bucks - was it worth getting sick and having to take antibiotics?