Author Topic: Going to do this myself, any advice?  (Read 8098 times)

newtosjs

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Going to do this myself, any advice?
« on: December 04, 2009, 06:14:16 PM »
Well, I have finally had it with being lobbed around by my doctors. After having lung biopsies done in early September which showed Interstitial Lung disease and Pulmonary Fibrosis, I was started on Prednisone 50 mg daily by the Pulmonary doctor. My Rheumatologist wanted to start me on CellCept, but agreed to see how the Prednisone did. I saw the Pulmonary doctor again in early October and he wanted me to see the Interstitial Lung Specialist who was going to decide whether I should be on the Prednisone or CellCept. I waited another month for that appointment. In the meantime, I can't sleep from the Prednisone, and just am going nuts with that. I finally see the Interstitial Specialist who is the most nasty arrogant jerk I have ever met. He will not even look at any of the records I have, and says he only accepts records from the provider. So, he will not take my Rheumy records, or any of my other test results. He insinuated that I do not know what I am talking about when I told him I turned purple with exertion. I have been a critical care nurse for over 20 years, and my co-workers also know what lack of oxygen looks like. He had me have a repeat CT scan the same day, and then called me back a week later for a repeat of the CT. Then 2 weeks went by with nothing. I called 4 times with still no results. I finally called the Patient Representative, and got a phone call. He told me he doesn't agree with either doctor, but "does not feel high doses of immune suppressants are warranted". I asked if that meant I could start tapering off the Prednisone, and he said he will not make that decision, but could expect a call from my Pulmonary doctor. That was a week ago! If I have suffered on the Predsisone for 3 months without even needing it, I want off now! I am starting to taper myself off, but don't want to hurt myself. The fact is that my breathing did get better on the Prednisone. I have gone from 40 mg daily to 30mg at this point. I am thinking I should hold there for at least 2 weeks, any one have any suggestions? If I have to be my own doctor, I want to be a good one! Thanks!

marilyn143

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Re: Going to do this myself, any advice?
« Reply #1 on: December 04, 2009, 07:19:45 PM »
Take it really slow while going off the prednisone.I was on it after I was in a fire and was taken off too fast and my blood pressure went way too low .spent 13 days in NICU before I started flipping out threatenig to leave because no one would tell me what was wrong.some student DR. told me.you have to pretty much be your own doc with this stuff.I have found that my cancer and mental doctors by far have been the most forthcoming with information  and treatment plans.I had went off everything and started with what I had to have like my allergy shots and pill.don't let the dr. make you feel like you don't know your own body.they do that when they don't know the answer.

Rhonda

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Re: Going to do this myself, any advice?
« Reply #2 on: December 05, 2009, 08:42:22 AM »
I understand your frustration.  I would be very careful about the Prednisone tapering.  It is a rough med, but you have to respect it.  Can your Internist or rheumy advise you on tapering?

Hugs

Babs659

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Re: Going to do this myself, any advice?
« Reply #3 on: December 05, 2009, 09:16:44 AM »
Hi.  I think it's a good idea to listen to your body.  Have you felt okay on 30mg?  Are you sleeping better?  Then I wouldn't reduce it anymore without doctor approval.  I believe it must be autoimmune related, based on everything I know about your case.  I think that doctor is WRONG! :-[

I'm so sorry you are getting the run around.  I agree with Marilyn.  The more arrogant they are, the less they know.

ErinG

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Re: Going to do this myself, any advice?
« Reply #4 on: December 05, 2009, 09:52:13 AM »
Be very, very careful with the prednisone.  I started at 60mg in March and have been tapering down slowly.  I have been stuck at 12.5mg for several months now.  I found that taking 3mg of melatonin helped me sleep when I was on the higher doses of pred.  I would talk to your primary care doctor about tapering down before you go any further.

Erin

newtosjs

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Re: Going to do this myself, any advice?
« Reply #5 on: December 06, 2009, 06:14:46 AM »
Thank you all for your responses. I have been on the Prednisone 30 mg for 5 days now, and plan to hold there for at least a few weeks. I talked to the nurse at my internist office on Thursday and told her what I was doing, she said she will let the doctor know and call me. I also have an appt with my Rheumy on the 22nd. This whole thing has just thrown me. I have been a nurse for 29 years and have always been treated as a competent member of my own medical care. To be branded as crazy and have everything I say discounted is a whole new experience for me, I don't like it! I am so glad that I have this forum to vent in, and there is so much good information out there. Will let you all know how it goes, so far, so good.

lynnmarie219

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Re: Going to do this myself, any advice?
« Reply #6 on: December 06, 2009, 10:16:50 AM »
I'm so very glad that you notified the doc to get his/her input as well.....I hope you start to feel better very soon.

I know what you mean about being made to feel incompetent when it comes to medical information concerning our own bodies and how they feel...I'm not a nurse, but I pride myself that I am able to research and figure things out on my own many times. I can only imagine how frustrating it is for you taking into account your  position and education when you have been trained in this area and worked in it for 30 years!

Hang in there!

stillsguy

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Re: Going to do this myself, any advice?
« Reply #7 on: December 06, 2009, 02:20:01 PM »
heres a how-to-taper off pred without getting hurt... 

http://www.arthritis-treatment-and-relief.com/prednisone-tapering-side-effects.html

wish u well

Patze

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Re: Going to do this myself, any advice?
« Reply #8 on: December 06, 2009, 03:25:00 PM »
Hi NewtoSJS, some of us can tell you some stories, but I'm sorry to hear how lousy you have gotten treated too.  It's got to be doubly hard being in the medical field yourself.

Hang in there, and keep us updated, okay?


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irish

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Re: Going to do this myself, any advice?
« Reply #9 on: December 06, 2009, 10:18:32 PM »
Welcome NewtoSJS, I am a RN also and haven't been able to work in 6+ years. I have been sick much of my life and have been treated just terribly by so many docs. They "label" a person "nutz" just because we are sick and looking for an answer. Because they don't know the answer they call us "crazy". Seems like it should be the other way around.

Glad you called you GP cause when a person is on such a high dose of Prednisone it can be tricky getting off. I have a very low tolerance for prednisone and can't do the higher dosages. I am on 10 mgm every other day for 5 years. I have gone up and down and daily and back to qod. My neuro wants me on this dose for my myasthenia gravis. She feels it gives me a cushion to prevent the crisis of myasthenia. I do know that when I got down to 5 mgm every other day my aching and other symptoms started in and I had to go back up to the 10 again. She says that this is a physiological dose and doesn't cause as much damage to the body as the higher dosages.

Good luck with your qwest for better health care. Irish ;D

newtosjs

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Re: Going to do this myself, any advice?
« Reply #10 on: December 10, 2009, 05:48:08 PM »
I got a call yesterday from my Internist office. They have been trying for 2 weeks to get a copy of the CT results from the arrogant Pulmonologist with no luck. They wanted to know if
I had a copy, that got a laugh from me. Anyway, I told them to let him know that I was decreasing my prednisone dose. They called back and told me that I needed to call my Pulmonary doctor about that. I told them to specifically tell him that the pulmonary doctor had "abandoned" me, and would not return my calls. That term always gets doctors attention. So he wants me to come in since I have had no medical care for over 2 months on really high doses of steroids. So, this should be an interesting visit tomorrow. I really would appreciate some medical advice on the tapering, so hope it will go well. I'll let you all know.

Patze

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Re: Going to do this myself, any advice?
« Reply #11 on: December 11, 2009, 04:34:58 AM »
Wow NewtoSJS, that is wild.  The pulmonologist wouldn't return yours or your Internist's calls?  Dang, and I thought I'd run into some tough docs!

Good luck on your appointment and I sure hope that your Internist can get the situation under control soon! 

Please do keep us updated, okay?


Patze
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newtosjs

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Re: Going to do this myself, any advice?
« Reply #12 on: December 11, 2009, 03:23:51 PM »
What an interesting visit today. My Internist was a little angry at first about my dropping my prednisone dose, then when I told him the entire story, he was livid, but not at me. He took one look at me and said I was holding onto way too much fluid. Gee, is that where that 15 pounds came from? He sent me straight to the lab, and wants more labs in 2 weeks. He also agrees with my decision not to return to the Pulmonary "Specialist". He would not refer me to a local lung doctor though, said he is not comfortable that any of them can handle my care. He wants me to go to Mayo Clinic at this point. I am so tired of being a "special" patient! I am due to see my Rheumy in 2 weeks, I am sure she will enjoy this continuing story as well. Hopefully we can come to some resolution soon. We did map out a plan for tapering the prednisone which makes me very happy!

Babs659

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Re: Going to do this myself, any advice?
« Reply #13 on: December 12, 2009, 04:59:13 AM »
That's good news about the Prednisone, at least  :-*

genko_b

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Re: Going to do this myself, any advice?
« Reply #14 on: December 12, 2009, 09:21:56 AM »
Good news that a doctor is helping you with the prednisone, and also that they could provide a reality check about the pulmonary specialist. It is so discouraging to have a doctor who is unresponsive and arrogant like that.

Genko