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Bama
01-20-2009, 02:57 PM
I have been on some dose of prednisone for over 4 years. Most recently I have been on 10 mg while I was pregnant. After my baby was born I flared again so imuran was added back. Before I was pregnant I was stable on 5 mg of prednisone and imuran. Iíve always wanted to try imuran only, but now I canít get below 7.5 mg. My GP thinks I have adrenal insufficiency due to prednisone. I get nauseated, weak feeling, and sometimes I will pass out. My blood pressure also drops to 90/60. I see my rheumatologist next week. Does anyone know if it sounds like I am stuck on a low dose of prednisone for life or has someone else had symptoms like this and been able to wean off?

Thanks for the help!

rob
01-21-2009, 07:08 AM
Hi Bama,

Our Admin, Saysusie, is our person who usually handles serious medication questions such as yours, and she is out of town for a few days. This sort of thing is outside of my meager experience. If you can hang tight on getting an answer for a couple of days, I will make sure she see's this question ASAP when she returns. If anbody else out there has any experience with this, please feel free to tell what you know. Thanks.

Rob
Moderator

Rastagirl
01-21-2009, 11:07 AM
Hello Bama,

I though I'd share my experience with Prednisone.

I've had Lupus for 27 years and had to take Prednisone right from the start. I had a very serious case and eventually my Immunology Specialist paired the Prednisone with Imuran. That combination was what helped me to eventually go into a remission.

In the first 5 years of diagnosis when I was flaring all the time, I was on pretty high doses of Cortisone to get things in control. Then we would slowly taper me down on the Prednisone. Every time I had a flare, back up I would go. So it was up and down for quite some time. About 5 years down the road, my Lupus began to quiet down and went into remission. I was on 12 mg. of Prednisone at that time.

Then, big surprise, I got pregnant. My doc left me on the Prednisone and took me off Imuran for the pregnancy. The pregnancy went well and my Lupus remained quiet througout. I had a beautiful, healthy son! :D

My Lupus stayed quiet postpartum. My doc had put me back on Imuran. Then 4 years later I was pregnant again. Another surprise!! Doc took me off Imuran and things stayed quiet with my Lupus again, although I did have other problems like severe morning sickness. I delivered my beautiful daughter :D 6 weeks early, she was 3-1/2 lbs. and spent 3 weeks in the NICU. Postpartum my doc decided to try things without the Imuran and I was able to get off of it completely.

At that time, I was still at 12 mg. of Prednisone. Because my Lupus remained in remission, my doctor began a very, very slow taper off the steroids. My Lupus doc is very cautious. I see him every 6 months and if I am doing good and my blood work shows no Lupus activity, he will have me alternate my Prednisone dosage, for example, I'll be at 12 mg. for 6 months and if all is well, he'll have me take 12 mg. one day and 11 mg. the next. I do this for 6 months and if all is well, I drop to 11 mg. And so on. Although this is extremely slow, I've been able to get all the way down to 1 mg. of Prednisone.

My doctor and I talked about the fact that my Adrenal Glands have been dependent on Prednisone for so long that we need to see if we can wake them up and get them to began producing their own Cortisone again. He told me that the average healthy person produces approximately 6 to 7 mg. of Cortisone, which is released every morning as soon as you wake up. That's normally how much you need to get through the stresses of the day. So when I reached 7 mg., he took things incredibly slow to give my Adrenal's a chance to wake up. So far, at 1 mg., it appears that I must be producing my own Cortisone, because I haven't had any problems.

I saw him in December when we went to 1 mg. and he said in June, if things are stable, we will try to stop the Cortisone. I must admit, it feels so strange only taking 1 mg. each day. I never thought I would get to that point. I've told my husband and family that when I finally get off the Cortisone completely, I am going to have the biggest celebration ever!! :lol: :multi: :bday: :P It's something I've dreamed about for years, and now I am right there ready to see it happen. :D

Bama, I wanted to share this with you to give you some hope! :) Hope that you may one day get off of both the Imuran and Prednisone. I'm curious, how slowly does your doctor taper your Prednisone? How long have you been at 7.5 mg.? I remember being stuck at 7 mg. for 2 years because of some symptoms I was having, and being completely impatient when my doctor left me at that dose. I understand now that he was doing what was right for my body and my particular Lupus situation.

I understand the frustration in wanting to get off the meds and wanting it quickly. It is so hard to be patient when you just want off.

But do be patient and work with your doctor in dealing with any symptoms. Be sure to communicate with him everything that's going on with you. Perhaps he will be able to get things stable with your symptoms and get you past that 7.5 mg. dose.

Don't give up. I'm hoping and praying that remission will come for you and you'll be able to get off both the Cortisone and the Imuran.

I hope this will be of some help. It's always helped me to hear from someone that shares my experiences and has some hope to offer.

Hang in there!

Fondly,

Lori :)

Bama
01-21-2009, 05:29 PM
Thanks Lori. It sounds like we have lots in common illness wise. That does give me hope that it can be done after so many years. I think my doctor tried way too fast. I was at 10 mg after my son was born and once imuran had kicked in again I asked if I could lower my dose and my rheumatologist said sure try 5 mg. That was obviously way to drastic of a step. My GP told me to go to 7.5 mg and I at least am not passing out or nauseated. I see my rheumatologist on Monday and maybe he will realize that he told me to try way to big of a step. I'll ask for a prescription of 1 mg pills so we can tapper in smaller increments. I only have 5 mg pills and dropping by 2.5 is still too much. Maybe someday I'll get off at least prednisone. I also have autoimmune hepatitis so I probably will never be able to be completely drug free, but you never know!

Rastagirl
01-23-2009, 10:44 AM
Hi Bama

Glad I could offer some help and encouragement. Definitely ask your doctor for the 1 mg. pills and talk to him about the very slow taper. Every time my doctor tapered too quickly, I'd end up back in a flare. It was only when we slowed down and took things 1 mg. at a time, that I began to see some success.

My doctor has been my only Lupus specialist for my entire 27 years with Lupus, and he has a great deal of experience. From all the stories on this forum that I've read of people dealing with Rheumatologists, I count myself extremely lucky that I found one of the best from the beginning of diagosis and have been able to stay with him all these years. I credit him with saving my life more than once. About 7 years ago, he went into semi-retirement and I was so worried he was going to drop his patients and just do research. I remember when his secretary called me and said he had decided to keep a handful of patients and I was one of them. Boy was I happy. :D

One last thing, do hold onto the hope that you may be medication free someday. We do not know what the future holds for us, and we all have the right to hope!

Fondly,

Lori :P