Hey all-here is my rant of the day. I feel GREAT--and no I'm not stoned or drunk. I just got over a horrible UTI and had a bad flare and now I am on the prednisone again. I've taken it many many times before and at much higher doses (I'm on 25mg)-but here is the difference--I am on remicaide, celebrex and amytriptaline and a pain pill if I need it (which I have not). I got up this morning and was able to walk to the bathroom without hanging on to the wall for the first time in maybe 5 years? I have been working around the house and yard--doing all of the things that I used to enjoy. I have had no side effects from this round and I am even sticking to a weight loss diet and exercise(I eat when I don't feel well). Here is the catch--my rheum wants me to do a slow taper off of this and I don't want to. I am sick and tired of being sick and tired. Don't I have a right to feel good?? I am a registered nurse--so I know the long term problems with prednisone and I'm not talking about staying on it indefinetly--but I am well overdue for a good month of my old self. What do you think? Do I have a case or should I just do what he says.
I am a nurse too. We all have a "right" to feel good but not at the price prednisone costs. There are only so many times you can "shock" the adrenals before they will fail. Not to mention the pain of cracked and broken vertebrae. If I were sure I was going to die soon yeah I would take prednisone and enjoy the ride. But I intend to grow old with this disease so I do not use prednisone. Some day if I am bed bound I may change my mind. For now I find new ways of doing what I enjoy; I have raised beds to garden in and my husband waters and cares for them when I am in pain, I have lots of kitchen and laundry adaptations so I can still do my "part"! But I also have the take out menus just in case. Yes we can take prednisone so we can "enjoy" our old lives for a shorter period of time and a big bill at the end with prednisone or we can get to know our new lives. It is all about choice.
I agree with you. a month of feeling good does wonders for the brain and I'm fairly sure that my feeling good and relaxed reduced the amount of pain and inflammation for quite a while after coming off it.
I love the way prednisone makes me feel. In fact, I remember once telling my doc that I am far more likely to become addicted to it than my pain meds. My GP will rx it anytime I ask for it. The rheum will not. He is very stingy with it, and think it’s because he sees the big picture with prednisone. The physiological harm that prednisone can cause can be quite catastrophic, and I don’t think that my rheumatologist wants to get into that with me. It took nearly 2 years of an off and on affair with prednisone and frequently adjusting my medications to get me where I am today. And where that is, is not ideal. I still have pain and I think that this is as good as it gets for me, but even as much as I love having prednisone, I know it’s not the best thing for me to be taking. I know it makes me feel better and makes me feel like there’s nothing wrong, but that’s a lie for me; it’s simply not the truth. Excepting the new normal, for some of us, can be a very bitter pill to swallow. It is a really tough adjustment, and it’s one that I wouldn’t wish upon anybody. However, it’s one that we do need to accept and learn to live with. Prednisone is for flairs: when your joints are swollen and tender and red, for times when your tendons are inflamed and painful. We shouldn’t be taking it just to feel good. It took me a while to understand my rheumatologists perspective on prednisone, and I’m a nurse too. But I’m glad I did and I’m glad I use it just for emergencies now.
Hello all- Wow--I didnt expect the attack messages! First of all--I do exactly what my rheumatogist and my IM tells me to do 99.9% of the time. My rheumatologist prescribed this prednisone taper because I was not able to walk due to the flaring enthesitis in both of my ankles. So basically I was bedbound. He prescribed 25mg x3 days and then drop by 2.5 every 3 days. I have stayed on the 25mg an extra 3 days and intend to fully disclose this to both of my doctors. I will start tapering in the next couple of days. I dont think that I am an abuser of medication and I really think that it is extremely rude to suggest that I might be because yes we are strangers and you know nothing about me.
I came to this "support group" because I have very little support or understanding of my disease at home and with my friends and co-workers. I was just so happy that for the past 5 days I could be normal again. All I was trying to do is share it with someone that I thought might understand. I have excepted my new "normal" and I know that this freedom from pain and fatigue can't last. This is first and only time that I have had any resemblance of remission and I have been on just about all of the medications currently available.
So for anyone else that wants to chime in with a snarky comment-save it--the one that are posted have already made me cry.
The statement "I deserve to....." followed by an action almost always leads to something incredibly self centered and dangerous to a relationship. Often its self destructive and stupid. Other times its a rationalization of a bad decision. Sometimes its all of those things
So you are asking if you should use medication against medical advice (from someone who specializes in the area and you have increased insight because you are an RN. Does that insight include the fact estimates vary for medication abuse by RNs exceed that of the general population from slightly greater to nearly double that of "regular folk". On the whole that insight seems to fail the medical community on a regular basis when it comes to themselves. never met an addict who didn't think they could handle it until they can't. then its too late.
I would think asking strangers on the internet to affirm a very bad decision would be a clue.
jhelvey, I really don’t think the messages you received are “attack messages”. They are messages that acknowledge the terrible toll this disease takes on us, physically and emotionally. They also point out the real and severe risks that come along with prednisone use. I’m sorry you took them as being an attack, when in fact, I think they were intended to remind you of the significant risks of the action you are proposing. True friends, who understand, do that. We do.
jhelvey said:
Hello all- Wow–I didnt expect the attack messages! First of all–I do exactly what my rheumatogist and my IM tells me to do 99.9% of the time. My rheumatologist prescribed this prednisone taper because I was not able to walk due to the flaring enthesitis in both of my ankles. So basically I was bedbound. He prescribed 25mg x3 days and then drop by 2.5 every 3 days. I have stayed on the 25mg an extra 3 days and intend to fully disclose this to both of my doctors. I will start tapering in the next couple of days. I dont think that I am an abuser of medication and I really think that it is extremely rude to suggest that I might be because yes we are strangers and you know nothing about me.
I came to this “support group” because I have very little support or understanding of my disease at home and with my friends and co-workers. I was just so happy that for the past 5 days I could be normal again. All I was trying to do is share it with someone that I thought might understand. I have excepted my new “normal” and I know that this freedom from pain and fatigue can’t last. This is first and only time that I have had any resemblance of remission and I have been on just about all of the medications currently available.
So for anyone else that wants to chime in with a snarky comment-save it–the one that are posted have already made me cry.
Call before you start your taper It will likely have to be adjusted 6 days at amounts above 20mg is more than sufficient to cause adrenal shock if the taper is too fast (it may be "uncomfortable" anyway)
People here do understand. You did a reckless thing. I hope it works out with no serious or long term bad effect.
jhelvey said:
He prescribed 25mg x3 days and then drop by 2.5 every 3 days. I have stayed on the 25mg an extra 3 days and intend to fully disclose this to both of my doctors. I will start tapering in the next couple of days. I dont think that I am an abuser of medication...........
Why dont you ask mr tntlamb about the message that he deleted
Seenie said:
jhelvey, I really don't think the messages you received are "attack messages". They are messages that acknowledge the terrible toll this disease takes on us, physically and emotionally. They also point out the real and severe risks that come along with prednisone use. I'm sorry you took them as being an attack, when in fact, I think they were intended to remind you of the significant risks of the action you are proposing. True friends, who understand, do that. We do.
jhelvey said:Hello all- Wow--I didnt expect the attack messages! First of all--I do exactly what my rheumatogist and my IM tells me to do 99.9% of the time. My rheumatologist prescribed this prednisone taper because I was not able to walk due to the flaring enthesitis in both of my ankles. So basically I was bedbound. He prescribed 25mg x3 days and then drop by 2.5 every 3 days. I have stayed on the 25mg an extra 3 days and intend to fully disclose this to both of my doctors. I will start tapering in the next couple of days. I dont think that I am an abuser of medication and I really think that it is extremely rude to suggest that I might be because yes we are strangers and you know nothing about me.
I came to this "support group" because I have very little support or understanding of my disease at home and with my friends and co-workers. I was just so happy that for the past 5 days I could be normal again. All I was trying to do is share it with someone that I thought might understand. I have excepted my new "normal" and I know that this freedom from pain and fatigue can't last. This is first and only time that I have had any resemblance of remission and I have been on just about all of the medications currently available.
So for anyone else that wants to chime in with a snarky comment-save it--the one that are posted have already made me cry.
Simple answer. Its the same one that is still there with an additional paragraph at the beginning When I pasted it back in it appeared after your post.
jhelvey said:
Why dont you ask mr tntlamb about the message that he deleted
I have read all the responses you have received including Lamb's before and after post. I do not see anything snarky nor an abuser of medications. You did something without checking with your doctor first but asked our opinion instead and did not like the answer. We have all known the heart break of prednisone. You can't just extend the taper and then complete the taper when you feel like it. It will have a bad effect on you, your inflammation and your pain. That is the other reason I no longer do prednisone tapers, I flare so badly during the taper it is just not worth it. I understand you do not like the answer you received here: I suspect you asked here instead of your doctor figuring we would agree and when we did not you were doubly disappointed. But all the answers you received were honest, respectful and written by people who took the time to answer you despite their own disabilities or pain. So you yell "foul" and throw a pity party. We have all been there and it sucks. The only times I have cried in the last ten years have been when I am on prednisone or the at the funeral of my son. Now it is time to put your tears away and have a deep think. You need to call your doctor and fess up. At the very least he/she will extend the taper to save you some pain. I do not think your adrenals will be is hock but he/she will know better. You did a foolish thing but like all of us you will learn what you can "fiddle" with and what you can not. We are in your corner and have been there. We are here for you now.
This post shows how this site has become dominated by moderators with some making highly opinionated replies that have got away from sharing experiences (but NOT yours Seenie). some of the replies here indicate the person posting has not really read the content of the original post and one has treated her as an idiot. I rarely get involved these days because of how the site has changed.
Hey jhelvey, I sort of understand how you are feeling....I mean about being attacked. But, really, these people aren't "attacking"--they really DO care about you--think about how you care for others who have this disease--you would probably get angry with them if they did something that wasn't healthy.
A few months ago, I BEGGED my rheumy and my internist for prednisone. I've only taken prednisone push (or whatever it's called when you take 5, then 4,3,2,1 for 3 days each--something like that anyway) three different times and it made me feel on top of the world! I felt so good the last time I had it, which was ordered by a different doctor who was in charge of my P.T., that I told my P.T. I felt like I was walking on air. I feel way smarter and actually invincible when I take it. So, I was fuming when my rheumy and internist refused to prescribe it one more time....I was in so much pain, I didn't understand why they wouldn't want me to feel better.
Now I'm glad I didn't take it. I ended up seeing a dermatologist who wasn't linked with my clinic and she actually did prescribe prednisone, but she also prescribed Enbrel. This is my first biologic. In the meantime, people here and other people I know (my daughter who's studying to be a Dietitian told me her teacher had said prednisone should never be taken--not one time--because it's so dangerous!), so I started to understand why my rheumy and internist were so dead-set against it--they actually cared about me enough that they didn't want me to damage my body with prednisone.
I still have the filled prescription of prednisone from my dermatologist--but started the Enbrel two weeks ago and it started working on my PsA right away. If you aren't taking a biologic, it would be a good idea to talk with your doctor about doing so, because it is probably the safest medicine out there for our disease.
GrumpyCat and tntlamb got quite upset with me--if you look at my discussions from a few months ago--but they only did that to give me good advice about what I should do to prevent further damage from the PsA. We all really do care about you. I feel bad for you because this disease not only makes your body hurt, but it makes you sad. :-(
Please understand nobody here would intentionally say something to hurt your feelings. I hope tomorrow is a better day! Take care!
Thank you for taking the time to insult everyone else who bothered to post, Allan. In case you forget, we are people, patients who take the time to reply to points like this. When I posted this morning, my hands were so swollen I couldn’t even type, and had use the voice function on the iPad. Thank you for pointing out how I neglected to share my own experience (I did, actually). And have been in the same spot (based on the story that I took the time to read) as the OP. Both feeling like I want to continue prednisone past the prescribed time and feeling entitled to feel well. Neither of those attitudes have served me well, which is why even though my fingers won’t bend I spend the time to respond.
Here, I took the day off from the board because I needed one (and felt guilty about it) only to come back to read posts lambasting us and where only Seenie’s post was an appropriate response. I do patrol posts and if I see more than two mod posts (other than on welcoming posts) I cruise on past and leave my two cents out so that I doesn’t seem mod heavy.
I gave up Facebook last week to donate more of my time to this site. Apparently, I made the wrong decision.
Funny thing. Alan, this thread came within one vote of being deleted last night, and a couple of members poofed so to speak. The use of prescription drugs off label or outside of the prescription is ilegal. In fact in some of countries represented on this board predi is a schuduled medication, making that kind of use a felony. It would be a violation of the user terms to discuss it, by those terms the proponents would be poofed along with the thread Instead the thread was moved to a less prominent forum, and disussion continued with input from several moderaters of both personal experience and proper medical warnings. You are very correct this is a heavily moderated board and that will not be changing. Experiences and opinions are welcome, BUT when it comes to medical matters, they had better be correct information, legal, with in standard practices, and not suggesting something that will cause or potentially cause harm. If someone has correct information, is mentally sound, legal age, I quite frankly could care less what decisions they make for themselves. I also could care less if somebodies feelings are hurt if they get a response they don't like. As long as its not a personal attack, name calling or overly profane, there is not one twit difference between one post or another, or whos making it.
And if anyone is counting (and I do) you have paticipated more in the last few months than since you joined back in 2011. Your cardiac experience has been very helpful. But insult any of my moderators again, and you and all 141 of you posts won't even be a memory. These ladies are facing unbelivable challenges and took time to share (and warn) from their hearts with another and experieces. I can only think you must be pretty miserable. If you want to take someone on, there is a message function. BTW, speaking of reading, the OP already made her decision and went of her taper schedule putting herself in a precarious position. Does she have a case for off label use for a month? There is only 1 rheumy in Cody WY. I am amazed she got what she got if it came from Dr. Danforth.
Anger is part of the grieving cycle. Everyone with this insidious disease has done something was not rational. I'm not sure were everyone is from, but I have no problem getting steroids. I have to beg a pain specialist for some pain medication, but without even asking I'm offered steroids. I have chronic yeast infections, even knowing, they still offer. I made a choice not to take them.
Seriously, these threads pop up from time to time (flame bait) and should have locked a long time ago (no offense to OP).
(Sorry, it's KIA me again) I agree--I would love to be on prednisone all the time. Actually, my mom (89) has been on it at least 12 years, with dosages ranging from a few mg to 20 mg per day--every day! I agree it's dangerous, but she was diagnosed with polymyalgia and she has bad arthritis in her hands--and had bad SEs from mtx. She is doing great and has more energy than 98% of people her age! She's dealing with neck pain from a whiplash she got 2 years ago in a car crash--and despite that pain--she's still doing better than most people! So, IDK, as much as I'm leary about prednisone--I understand where jhevley is coming from and be nice to her--she's just looking for reassurance--I feel so bad that she's sad cuz I know how sad I've been these past couple years. Come on people!
mataribot said:
Anger is part of the grieving cycle. Everyone with this insidious disease has done something was not rational. I'm not sure were everyone is from, but I have no problem getting steroids. I have to beg a pain specialist for some pain medication, but without even asking I'm offered steroids. I have chronic yeast infections, even knowing, they still offer. I made a choice not to take them.
Seriously, these threads pop up from time to time (flame bait) and should have locked a long time ago (no offense to OP).
I hear you Grandma J. I too have been very sad. But I think we are all forgetting 2 major points. This site is for support AND education. To focus on one without the other is a major problem and diminishes the site three fold. Proper education arms our members for the horrendous fight PsA calls us to. Support without it allows us to indulge in pity parties while embracing the status quo. This is simply not ok. We need to fight this disease with everything we own. And with the help of our friends.
The other point is the OP is all ready showing symptoms of roid rage. Prednisone tends to make it's users weepy and mad at the world. I would suspect she has all ready ingested too much and is in for a rocky ride. I have never found prednisone to truly give me a break from the pain and the heart ache. I simply pay it and more at the end of the taper. Very painful.
Remember people there is a huge difference between calling someone's acts stupid and calling a person stupid. We are not children and should know the difference. In any mature relationship if honesty is to be protected one should be able to call one's friend's or family's actions foolish when it warrants it. I always offer my support and affection when doing so (I must have a little Seenie in my soul!) but when the stakes are high and I am asked I will always offer my opinion.
We use to use a lot of prednisone in dogs with incurable disease. It gave them incredible quality of life for the end. They would eat and play and be their old selves. It was sort of a swan song for the old dogs and their families. BUT they would crash and burn within 6 months or a year. And would end up being euthanized when their legs, bowels and ability to eat suddenly gave out. When later I went to nursing school prednisone was still used this way when the end was near for human patients. BUT there is no euthanasia. We have found better ways to help patients when the end is near. Believe me prednisone is not your friend.
There are adults who are educated and able to make their own decisions and will have to take responsibility for their decisions. That is part of being an adult. I have no problem with this. If someone uses prednisone knowing what it may entail that is their right. I do have a problem when they try to lead others down that path without educating them to what that may mean for their future. If the patient is 80 or 90 okay. But not when they have some living still to do. We know better now and need to do better.
We are all in this together. Your mods are here to support and educate you. They will not always tell you what you want to hear but they will tell you the truth and support you every step of the way.