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Frustrated and exhausted and too much prednisone

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Posted 12/5/2008 2:35 AM (GMT 0)
I keep thinking I am at the bottom of the hole but then the bottom falls out and I find a new low... I haven't been here for awhile as I have been insanely busy trying to get some research done for my thesis while teaching almost full time. Add to this a whole lot of other stress and I ended up in a flare- in so much pain and muscle weakness I could barely walk. My doctor admitted me to the hospital where I encountered a resident that decided I was drug-seeking upon my arrival which led to me being discharged too early (less than 2 days) and the worst care by far I ever recieved. Anyway, the plan was for me to be inpatient and receive IV solumedrol but instead I was released and told to take 60mg 2x/day of prednisone. I have an EXTREME sensitivity to prednisone- both with mood problems and not being able to keep it down. However, they ignored what I said and what my doctor wanted and so my rheum and I talked and we decided I would take an extra 5mg/day because that is all I can tolerate.

Unfortunately, with all the stress combined with the steroids I became extremely agitated, paranoid, and suicidal. I have bipolar II- which has been dormant for about 10 years so I called my psychiatrist and am temporarily on antipsychotics to try and get rid of the paranoia etc... All I want is to be back to normal. I am so angry that no one believed me that oral steriods always wreck havoc on my life (the doctors from my hospital stay. my rheum is an angel and knows this is the case). The thing is that I can do IM injections or IV solumedrol without any side effects so had they just kept me long enough this wouldn't have happened.

I apologize- I am just exhausted and I hate the drugs and I hate not being believed. I dont know what I am asking for- I just feel like I am teetering on the edge of a cliff and don't know who to look for for a shove in the right direction. Thanks for reading if you made it through this.

sharky
Posted 12/5/2008 3:16 AM (GMT 0)
Hi Sharky,

 

I sure do understand where you're coming from with the prednisone issue.  On those high doses, they mess with my head too.

 

Is there any way you can have the I.V. Solumedrol done at home, or at your rheumy's office?  What about home care coming to do this for you?

Please don't apologize! My goodness, that is why we're here.  To try and help and brainstorm and let you know we care..... blush I wish there was a simple answer for you.  Has your rheumy offered any advice or ideas?  I'm so glad they know your situation and understand.

 

Please let us know how you make out okay?

 

Ginny

Posted 12/5/2008 4:08 PM (GMT 0)
Ginny-
Thank you for your kind reply.

I hate the stupid prednisone and the worst part is that even a small dose can send me into a bad state and that doctors dont believe it can happen at such low doses. My rheumatologist does believe me but it is hard to get across to others who are supposed to care for me...

Right now I am just dealing with the symptoms of lupus while being on my low maintenence dose of pred because they are afraid to put more in my system until the paranoia and agitation go away. Its really frustrating. However, I can deal with joint pain, pleursy etc if I can be sane again!!

Again, thanks for your reply. It has been a very lonely past couple of weeks and someone acknowledging me really means a lot.

sharky
Posted 12/5/2008 4:15 PM (GMT 0)

Hey Sharky,

I wish I could give you something that you need to hear, and need to know what is going on with you, depending on some doctors, who apparently do not know what they are doing.

Will send prayers to you

Hester

Posted 12/5/2008 4:24 PM (GMT 0)
Hester-
Thank you. Not knowing what is going on or what will happen next is the worst part of this disease in my opinion. Thank you for sending prayers it means a lot... I may not post often but I do read quite a bit. I am sorry to hear about your stroke and continuing issues. I wish you the best and pray for your speedy rehabilitation.

sharky
Posted 12/5/2008 6:23 PM (GMT 0)
Sharky,
I am so sorry you are dealing with all of this. I was also accused of drug seeking once when I went to the er. (It turns out the lupus was attacking my heart and I needed a pacemaker) Nothing offends me more or makes me more mad!!! The steroids can do a number on ya. With your history of BP II you need to be really careful. Have they put you on Plaquenil or Imuran or anything else to help ease the symptoms? Keep us posted! Judy
Posted 12/5/2008 6:28 PM (GMT 0)
Hi Sharky. You sure are having a rough time. I'm so sorry you can't get proper treatment. Depression is a way of life for me too. During the time I was very sick (lots of pain, fatigue, etc) and doctors didn't believe me, I attempted suicide. Spent the next couple of days in a psych rehab hospital which really sucked so I'll never do that again. Now I always take my psych meds and immediately see my shrink if I feel suicidal. I'm not trying to lecture. I just hope you do what your psychiatrist asks. As for the prednisone, have you considered one of the prednisone sparing drugs like methotrexate or imuran? It certainly wouldn't help you now, but might help long term. Please let us know how you're doing okay? Love, Butterflake 

Posted 12/5/2008 8:09 PM (GMT 0)

Hey Butterflake and Sharky,

I did not see this post that you responded to Sharky as a lecture.  your words spoken to Sharky were good words for me too.

I tend to think that depression in people with Lupus, is different from depression than people are sad.

Why doctors do that path?  Why do they simply tell us it is all in our head,  simply because they do not know what it is.  They have no answer so it must be in our heads.

Thank you for being so able to share

hester

Posted 12/5/2008 8:16 PM (GMT 0)
Feeling bad, feeling psych, and then to not be believed!!! ARG! I know how maddening that is! I can't add much more than the others have said - Perhaps when the current situation settles down some you can get your good doctor to write a letter with standing orders as to what you are to be given & not given in the emergency room - and make sure to go to a hospital where he has privileges. I would probably put down that I was allergic to prednisone!!! A reaction that bad is certainly (and honestly) not normal & deserves to be noted in all your records. Hang in there,
Posted 12/7/2008 5:36 PM (GMT 0)
Thank you all for your kind, heartfelt replies!! you have NO IDEA how much it has meant to me these past few days... The whole "drug seeking" thing is extermely obnoxious and difficult for reasons I can't control. I am allergic to naproxin, codeine, motrin (face swelling itchy mouth and throat) and reglan (psychosis). In addition to that whenever I take morphine or dillaudin I require antihistimine IVs because I itch like i am trying to remove my skin... This is documented in my chart and I wear a medic alert bracelet but people are still morons about it. I never tell them WHAT to give me but do point out my allergies as I am unwilling to deal with those rxns again!.. I am looking into saying I am 'allergic' to prednisone but when I have a severe allergic rxn (requiring epi) I would still probably need that... Worth thinking about though...

This exercise has left me exhausted and humiliated. My rheum knows I am the LAST person on the earth to be 'drug seeking' or 'attention seeking' and we have joked about it many times. I called and followed up with the doctor supervising this overzealous resident and my rheum has also done what was needed to straighten things out. I am still terrified for the next time I end up in emergency or if I need a pain management doctor because I fear they will reject me!.

To give a little more info about me, I am taking plaquenil and methotrexate. The MTX did help decrease the prednisone dose but we cant seem to quite get rid of it so I take 12.5mg of hydrocortisone (which is 2.5mg prednisone).. I have had problems with prednisone making me suicidal before but it was always caught early and fixed. I am just praying that I can pull my life together soon. I did decide to reconnect with my old therapist so I have some support through this.

Anyhow, sorry for the novel - i am just SOOO relieved to have people believe me and to know it is not just me all alone.

Thanks and many hugs
Laura
Posted 12/7/2008 5:49 PM (GMT 0)
Hi Laura,

 

I really do understand your issues with prednisone.  it's a tough drug to love, but it keeps us alive! When you can tolerate only small doses it's hard to warrent needing to be on it, doesn't it?  I mean 2.5mg is such a small dose.  I wonder if your other lupus meds can be tweeked so that you can come completely off of the pred?

 

My issues with prednisone are that I need it for my lupus, but it makes my Fibromyalgia unbearable. It's a catch 22. I can't win for losing!  I'm trying to taper down again to see if just a 1mg dose less will help my Fibro calm down, but still keep my lupus quiet.  I have to run this past my rheumy first.  It's really tough finding that balance isn't it.

 

I hope you get the whole pain med issue under your belt and finally dealt with.  I can see how this is so exhausting for you.  Haha, I tried Dilaudid for my post-surgery pain last month.  HOLY CRAP. I took 2mg of the stuff and I was hallucinating, hearing voices and it wound me up so much I couldn't sleep.  Plus it did squat for my pain! Hahaha.... That stuff is evil!!  Clearly a drug I can't take again! 

 

Take it easy and have a good Sunday Laura,

 

Ginny

Posted 12/7/2008 7:36 PM (GMT 0)
Ginny-
First of all, dillaudid is DEFINATELY evil stuff! My parents tell me I was telling them some weird stuff while taking it and they had to put socks on my hands to stop me from itching (I guess I was so out of it that it actually worked!)

Predisone is darned if you do darned if you don't in my case also... Without this tiny dose of prednisone the rash comes back along with fatigue, ches t pain, joint pain etc... The balance is very difficult to find. I agree. hopefully you and i will both find a liveable balance some day soon!... The methotrexate has done wonders for me but without that little bit of pred I flare... It is really obnoxious in my opinion!

I actually take almost no medicine for pain (mostly due to allergies etc) and physical exercise keeps me from needing it . However, when I am sick enough to need it, no one believes I am allergic to so many things. jerks.... lol.

Anyhow, a little more about me, I am hoping to finish my PhD in the next 8ish months (providing I can get my body and head to stop acting this way!). I like to read, sleep, and dod thee NYT crossword (ie a big dork! :) ).

I hope today is going well for you.
Thanks again for your kind replies.
Laura
Posted 12/8/2008 2:53 PM (GMT 0)
Hey Sharky,

I am very impressed by you.  doing all that you have to do and still get your phd work completed.  Can I ask you what your phd degree is in?  In 8 months or so we can call you Dr. Sharky? yeah

take care

Hester

Posted 12/8/2008 10:53 PM (GMT 0)
Laura, oh my goodness.  We are in the same boat with the pain med stuff!!  I don't take anything except extra strength Tylenol. I've tried EVERYTHING but I can't tolerate the side effects. I"m really sensitive to medications (I'm also a red head.  That has a lot to do with it).  So when I need pain meds for my Fibro, I can't take anything!  I think my rheumy is frustrated.  Ummm, yeah, try being me!!! I think your word, "obnoxious" is perfect for this...

Good on you for getting your PhD!  I hope these issues calm down for you too.  How exciting!   

 

 

Posted 12/9/2008 12:54 AM (GMT 0)
Ginny-
My rheumatologist jokingly refers to me as a "pharmaceutical cheap date" lol. Though I am not a red head I am so sensitive to drugs it is ridiculous... A 5mg dose of pred for example can effect me like 60mg would a normal person. It is frustrating... It often makes me want to smack the doctors who think they know me better than I know myself...

Thank you all for the support you have given me in the past several days. Being a grad student is a lonely enough place in itself but being sick and feeling crazy on top of it was getting unbearable. Hopefully I will be able to offer you guys some of the help you have given me. It has made a world of difference...

Serina- Dr. Sharky seems like an excellent title for me :) I iwll obviously let you all know when i cross that bridge. This will be my third degree in chemical engineering by the way.

Hope your days are going well and thanks again!
My best
Sharky
Posted 12/9/2008 1:21 AM (GMT 0)
Laura, I don't think you realize that you are already helping people here.  You ask questions, you provide feedback and you answer questions from other members.  It's all support, and it's all very appreciated! 

 

Hehe, so you're a pharaceutical cheap date!  That's funny!  Sounds like you have a good doctor there. Hold onto him! 

 

Chemical engineering!  Wow.  That takes a lot of brain power I'm sure. There are a lot of you here in Alberta, Canada.  Big with the oil and gas sector. Important people!!  Good luck Sharky!

 

You have a good night too,

Ginny

Posted 12/9/2008 4:45 PM (GMT 0)

I agree with Ginny... Sharky.  you are already helping.  Prior to my heart attack in October of 2007, I had everything done to start my Masters Degree in social work.  I know that I can't do it, but it is inspiring to me that you are getting another degree, even though you too are sick, and in pain.  Repsonding is helping.  and then this stupid stroke, who upset my memory to a degree and really messed up my speech. 

any day that I want to or need to, I can read the Lupus forum, and I am inspired by hope.  We are not alone due to this forum.  My lucky day when I found this forum.  i went looking for  a support group for lupus.  the first group that I found is the one that I chose, and haven't needed another one.

Hope your day has been good to you

Hester

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