Prednisone not helping - or losing my mind?

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tinglyinnc
Regular Member


Date Joined Jul 2013
Total Posts : 69
   Posted 7/26/2013 8:45 AM (GMT -6)   
Hello, all! I could use some insight from those who have used Prednisone.

My rheumy gave me a 12-day burst (40mg-30-20-15-10-5/2 days each) and I am currently on Day 8, the second 15-mg dose.

He told me to call him to let him know how it was going; that everyone feels great the first few days, but he was more interested in days 9, 10 and 11, etc.

He said if I felt better, then it was a key that this is autoimmune. And if I felt worse, that we were back to square one. Is this a hard and fast rule?

Immediately on this drug, I have had intense, horrible chest/lung pain. I already had SOB, but this was different. I called the nurse on Day 3 to ask, hey is this normal? The dr had her call and tell me that because I already had chest pains and SOB, that the meds were just making it worse. Alrighty - as long as I am not dying, I'm ok.

But here we are on Day 8, and I have not had any improvement whatsoever regarding symptoms. In fact, my symptoms seem to be on a steady decline. The only thing Prednisone has done for me is I have longer stamina. I can stand now for 20-25 minutes before wilting into a pile on the floor, whereas before it was 10 minutes. I can carry a pot of water to the stove - albeit shaking and spilling, and causing hours of aching afterward - whereas before, well, ok ... I couldn't do anything more than stand before. That IS improvement, I admit ... but? I am minimally functioning here.

I called the nurse this morning and said so, I'm finished with the Pred on Tuesday (it's Friday today...) ... when do you want me to report how I am feeling? She said, well... when your symptoms return to the point you are having intense pain. At that dosage, call us. I said, yah - my symptoms have never stopped! In fact, they continue to worsen. And I explained to her what I just wrote here about the fatigue? Would that be fatigue that it is helping? Energy? Strength? It feels false, whatever it is ... just because I CAN stand, doesn't mean I should... ya know? I definitely suffer for it afterward.

I am waiting for the call back...

Do you guys have any insight here? I wont bother with symptoms unless necessary. But the one that is unbearable is the lung stuff. Man oh man. The pain, which gets INTENSE about 2 hrs after I take the pills (any dosing), radiates from behind my breastbone (feels like lungs), up in to my neck and jaw, down my arms... yesterday it even went into my legs! It hurts! It feels like the kinda of ache when you hold ice in your hand for a long time... only without the cold sensation. Or fall on your tailbone - you know how you feel that in the back of your throat? But this is across my chest, upper back, shoulders, arms, etc.

I notice, now, a lacey rash - very faint - on my trunk and arms. I feel like my skin is on fire and can't even let my husband's skin touch me at night or it burns (even fabric, in some places). But there is not a "noticeable" rash. I had desensitized skin for days; now it's gone crazy. No fever and my husband says I feel normal... even though my hands are swollen and on fire at night! My joints feel hot.

Is it possible the Prednisone DID help inflammation? And now it is coming back? It feels like in the past couple of days, the constant and shifting tingling and numbness has been replaced with heat.

I have a speckled 1:160 ANA, but all other bloodwork is in the normal range. I've had an echo and that shows normal heart function.

I appreciate anything anyone has to offer... thanks a bunch!

Jen :)

Update: Dr called back. Finish the meds, and we'll see you at the follow up (in a month..........)

Post Edited (tinglyinnc) : 7/26/2013 8:15:34 AM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/26/2013 1:42 PM (GMT -6)   
I always feel better when I'm on predisone. I feel a little more energized, but I always "crash" two days later when I finish the round.

I hope you feel better soon. If you keep feeling bad or your symptoms get worse go see the doctor.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 7/26/2013 3:19 PM (GMT -6)   
 
I am very Prednisone dependent and always feel better when on the medication.  It relieves my joint pain and acts effectively to reduce fatigue.  I feel more alive and definitely more energized.  I am well-maintained on a dose of 10 mgs every other day.  I take 5 mgs on alternate days if I am feeling more achy or in the middle of a flare.  I have been on doses as high as 20 mgs, all with good results and no issues like you describe.  I do, however, have other side effects because I have been on the medication for a long time.  I bruise very easily.  I am osteopenic.  And my skin has thinned considerably.  Like Joy, I tend to crash when we have made attempts to lower the dose.  I would see your doctor if you continue to feel bad.  It has to be hard on you.
 
Laura

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/26/2013 3:50 PM (GMT -6)   
The general rule-of-thumb is that if prednisone helps, then it's Lupus, but if prednisone makes things worse, it's Fibromyalgia. I might go so far as to guess that you are having a allergy-like reaction, no way should prednisone increase your chest pain 2 hrs after taking it.

In either case, you should definitely make an appointment and discuss your experiences, day by day, with your rheumy. Since you've not yet found any relief from the symptoms you do mention, you need more treatment.

Sometimes it takes a long time to come to a clear diagnosis with these types of illnesses -- but even so you should be getting your symptoms treated so you have some relief.

Let us know how it goes -- you might even check into getting a second opinion if the rheumy can't help you more rapidly.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/27/2013 12:30 AM (GMT -6)   
I've been on prednisone for over 12 years now and I always feel better when my dose is higher. I have all the terrible side effects of long term steroids use, but it never fails me and ALWAYS improves my chest pain, SOB, joint pain, and 101 other issues.

I have to agree with Lynnwood, it sounds almost like you are allergic to the stuff, you know though, they usually give it when someone is having an allergic reaction. I'd be on the phone ASAP or go to the ER and be seen. Your chest pain shouldn't get worse like you describe 2 hrs later.

Lupus is hard to pin down, and it varies from patient to patient. Some are mild others are severe. It took my Drs 13 years before saying yes I had it and started treating me. I totally blame the long wait for why I'm so sick now.

I hope that you begin to feel better soon and please be seen. Please come back and let us know what you find out. Oh, a lot of the lupus symptoms are like Fibro symptoms. I have both of those plus RA and I have days when it's impossible for me to tell which problem is causing what symptoms. Take care and good luck.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

tinglyinnc
Regular Member


Date Joined Jul 2013
Total Posts : 69
   Posted 7/28/2013 10:25 AM (GMT -6)   
Thank you so much for the replies! I am not sure what to think.

I wound up going to urgent care yesterday because I was still feeling so short of breath. (Yesterday marked my first 10 mg dose of Pred). They did an EKG and a chest X ray which both came out normal. Meanwhile, I was panting and limping going down the hallway to the bathroom and the nurses were perplexed.

Basically when I lay down, my chest hurts, I can feel my breathing but am ok. It's when I sit upright, stand or do anything when the heart begins racing/lungs struggle and I feel lightheaded and dizzy. I had an echo recently and that was normal too.

I finally understand what joint pain feels like now - my shoulder, especially, is red, swollen, tender and feels like it is on fire. My hands. My whole arm aches and makes me want to cry. Laying flat is the only thing that brings it down - when I sit up, my hands swell and turn red, my lungs act up and there I go. When I lay flat, my veins look normal - when I sit up, the veins on the back of my hand swell up and get huge (strange for me - they can hardly draw blood from my weenie veins). Last night and this morning, getting out of the shower (lukewarm), all the blue veins on my palms and fingers were showing - it was so weird looking! Then they filled up with dark red and I had blue and red hands. When I lift them in the air, my hands feel better but my shoulders hurt - like the blood is going back and forth from my hands to shoulders, aching through the veins as they go. Has anyone ever experienced that?

I went downstairs to take some potassium this morning, and came back upstairs, laid in bed and panted, so out of breath! It takes about 10 minutes to get back to normal after I get up and walk around.

How can I be totally normal in all these tests and huff and puff after walking down my driveway?? It's so weird.

Is it possible the Pred was actually controlling inflammation, and now that is it tapering down, inflammation is increasing? Or is it coincidental that this pain increasing would have been happening anyway? I used to only feel the pain at night, and had tingling during the day. Now it's aching and hot.

This is only Day 10 on the Pred... two days left (5 mg the next two days).

My rheumy will not see my until the 19th, so I am feeling a little alone in all this. His nurse is like a gatekeeper, and I have to argue with her on the phone, so I don't even know what she is telling him when she passes messages on. Should I see my internist tomorrow? I wonder if she may be able to call him personally and discuss? I am really struggling, and frustrated because I have no idea what to think.

I really, really appreciate your support and help!

Post Edited (tinglyinnc) : 7/28/2013 9:28:04 AM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/28/2013 12:58 PM (GMT -6)   
I'd talk to my primary care doctor.
Feel better soon.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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