Tapering off of Prednisone

Hi Judy @jnebrig, You mentioned you tapered off prednisone on May 25th and your pain is unbearable. The goal of tapering off is do to it slowly and only taper down if the pain is under control (maybe 1 or 2 on scale of 1 to 10). If you just stop taking it because you were told to be off in x number of weeks, I would have a long discussion with your rheumatologist or doctor. Everyone is different when it comes to pain scales and tapering off. My first time took 3-1/2 years to taper off and the second time a year and half.

This is VERY hard. I have only been able to taper to 7 1/2. If I went off completely I would also be in unbearable pain. PLEASE talk to your Rheumy. I want to be off of it too, but I don't want to be immobilized by pain.

July 23,To Judy Nebrig from Mimosa.
My pain is now mostly in the rump muscles area, especially bad when I just set. Also a mild pain when walking. I know that I need to walk or exercise more, but in this intence heat I tire so quickly.
In the begining, I had insomnia also.---Make yourself a cup of camomille tea (with a wee bit of honey) about an hour before bedtime. An old French custom. Should help insomnia and headaches.

Lizzie, unfortunately I didn’t wean the 1st time and I’m suffering unbelievably. By the time I got back on to wean it was too late. I see my internist Monday. I’m not taking any prednisone now. Can hardly walk and can’t sleep due to hip and shoulder pain. I don’t know if I’ll ever get back to normal. As you said, the pain is immobilizing!

That's how I started out. the pain was unbearable. I'm sorry about what you are going through. I wonder why you couldn't get a script by phone. Especially if they know you're history. When I was first diagnosed I was put on 40 mg, and the pain lessened w/i hours. I couldn't do anything on my own to free up the pain. No one knows how it feels unless your've been there.

My starting dose of prednisone was 60 mgs a day....It;'s now down to 7mg and only because of the infusion. I had so many complications and thank GOD that I'm alive I hope and pray you are well now.

Lizzier, your pain was unbearable from what? Getting off prednisone? What script are you suggesting I get by phone? What were you diagnosed with to cause you to be put on 40mg of prednisone? How are you now?

I had PMR & GCA. I was in unbearable pain, from the PMR. When (after a long while I was finally diagnosed thru an ER doc.) I was sent to my primary care doc, the next day. The ER doc said "why have you not been able to get an appt. with your primary care doctor?" , and I said "I don't know I guess they are too busy." He said" well they will see you tomorrow" The next day they called me at 8:00 a.m. and I was seen immediately, and put on 40 mg of Prednisone. I have no idea what the ER doc said to my practice, but whatever it was...it was effective". I'm no longer with that practice. I thought you had PMR then had some recovery, and then you had a re-occurance, I wondered since you had the disease once, and a history, that they could put you on prednisone since the docs already knew your history, instead of making you wait for your first visit. I know they have to do bloodwork, etc., but to have to wait for an appt. and not be seen right away seemed like too much pain. You described it as unbearable. I just wondered since you are a known patient with a known disease if they could do something to relieve the pain for you while you waited to be actually seen. I recall those early days of not being able to sit up w/o being supported by pillows on both sides of me, or not being able to turn over in bed, because of the pain, and it does feel unbearable. I just wanted to wrap you in cotton. I remember the pain, and I hoped for some relief for you. That was all.

Just wondering my Dr. only suggest reduction in pred by my blood test. I am now on10 mg. Taken me a year of going up and down. Does anyone else have inflammation numbers go up and down a lot?
Thanks Sue

In December I was at 60 mg. Now at 3 mg. The headache is awful. There are two things that help; a heating pad and a combo of 4 Advil and 3 Tylenol. That’s Dr prescription strength. If I’m still feeling awful a shot of bourbon!