Prednisone??

In my research, I found a lot of people with Lyme that have emphatically stated Prednisone (or any immune supressents) is the worst thing you can do.

For the last 20+ years, I have had major allergic reactions to medications or anything that you can place on your skin (plants, perfumes, lotions, etc). Any reaction, even the slightest rash, becomes systemic. The only way to stop the reaction is to take Prednisone. At times I would have to take large doses (from 30mg to 50mg) and/or for very long periods of time (anywhere from 3 to 7 weeks).

Most recently, I took 30 mg daily for 12 days. During that 12 days, ALL of my symptoms went away. Of course, once I stopped my body was slammed, but I knew that going into it.

So my question is why are steroids a no-no? Is it because when you stop taking the steroid you do get slammed and it takes a long time to get back to where you started? Or is there some other reason?

Thanks, Kim

Which would explain why I get slammed after I go off the prednisone.

I discussed that with my doctor, actually he suggested it for short time so I could enjoy my vacation. My daughter graduated college in mid-December and in January moved to Florida (we're in NC). So we scheduled a family vacation in between.

From the first dose every single symptom went away. I had forgotten what normal felt like.

So I wanted to know if the reason Prednisone is contraindicated is because as an immunosuppressant it will stop the reactions, even though the bacteria continues to produce. Then when you stop the immunosuppressant the additional bacteria is released do you get an even stronger reaction.

I just wanted to make sure that there was no other reason than that.

I understand. If I test positive, it may be a problem if i have an allergic reaction but hopefully I'll have a doc that can help figure out what to do.

I have never before taken prednisone for the sole purpose of blocking my symptoms. This was a special case. We were going to Hawaii for possibly the last family vacation we would have. It was either me sit in the hotel room the whole vacation or take the prednisone and spend my time with my family.

Quite frankly, I've missed out on too many things and based on the info we had at the time it was the right decision for ME. For anyone else, they have to look at their situation.

I do understand though that immunosuppressants can casein infection to run out of control.

Interestingly, one of the pain medicine specialist in the practice had run a bunch of testing on me and didn't find anything. She wanted to put me on Prednisone to see if it was something "systemic". Some docs just have to go through the hoops even if you can save time or money they still want to see things for themselves.

I was gong to be having some allergy testing done and wouldn't use the prednisone. Then a bunch of things happened at once and I was unable to try taking the Prednisone. My vacation came up in conversation at my last doctor's visit and he asked me if I would like to try taking it during my trip and I immediately said yes. Of course the amount he gave was not enough. A few days into the trip when I started to taper down, I felt, as expected, like I had gotten run over by a train.

Four phone calls, 3 pharmacy visits later I had enough to see me through.

I had no symptoms at all. I even has a very small vanilla ice cream pop with symptoms (normally It doesn't stay down).

I knew though when I got home I would be trashed and 3 months later I still feel trash but it was worth it.

So my doctor and I talked. I knew that the Prednisone was a one time thing. I've know many people who have taken it including my self. My doc basically said that he would be comfortable no more than 4 times a year.

So I have the option, but I do know it's a just in case measure even though it makes me feel normal. If I take it to often then it will do bad things to my body. I also know that once you get dependent on it you never get off.

Thanks again, you gave the info I needed and I did have anyone else to ask.

Kim

Simela1,

Thanks for the post. I think though that I was probably not clear about what my situation was.

I've had these symptoms for 35 years with increasing symptoms until about 15 years ago when I could no longer work. I've had this same Doctor for more than 10 years, so he knows my history well and we make decisions together.

In early December, I visited my doctor (between normal 3 month visits) to discuss some blood test results. It came up in conversation that I was going on vacation and he was going on vacation at the same time.

The discussion was about me starting a new med and what kind of problems I might have. He said just call me if you need anything. I said that I wouldn't be able to reach him because the nurse(?) said he would be on vacation. He told me they would be able to get a hold of him.

He asked me if I had every tried Prednisone and very honestly I said I love Prednisone. I think I scared him. Then I explained that In the past I have been on Prednisone for varying lengths of time for allergic reactions. I always felt better on Prednisone. I am also very familiar with it because both my mother and father-in-law have been on it for very long times.

I know it's really not a safe drug to take for long periods. I know that every time I take it, it eats away at my already low bone density.

He said if I like he could give me a script for Prednisone so that I could have a reprieve from my symptoms while on vacation with my family. So that's what we did. I ended up on Prednisone for about 2 weeks. Life was wonderful. I took it knowing that once I stopped I would be slammed and basically bed bound for quite a while.

It was worth it. We went somewhere all of us (My husband, a 22 yr old daughter and a 15 yr old son) had wanted to go for a long time. I would have ended up spending the entire 2 weeks in the hotel and everyone would have been miserable.

My normal every three month appointment was a couple of weeks after we got back. We talked about the prednisone. He knows that I know the side effects and that it can affect bone density.

My diagnosis is Fibromyalgia, even though I am currently looking into Lyme since every thing fits. There is a lot of over lap and some symptoms that i have are never seen in Fibro. So there is no cure.

Treatment is all about quality of life. So in that vein, my doctor told me that prednisone was something i could use if there was something going on that I just couldn't handle without complete relief from my symptoms. Based on my history including the low bone density, he said he would be comfortable with letting me take a short course of Prednisone up to 4 times a year. It wasn't a oh you can take prednisone anytime you want. It wasn't Oh, its November and I've only had prednisone twice this year so I've got two more when do I want to take them. It was specifically, for quality of life there are some things you have to do that may be impossible without some relief of your symptoms.

The original reason I posted was to find out WHY? steroids were bad with Lyme. If the answer was that the Lyme would be suppressed while on the steroid, but would come back in full force once you stopped taking the steroid, then i was prepared for that.
If it were because prednisone would damage my body, then i wanted to know in what way so I could make an informed decision.

I thank you and everyone else for taking the time to post. I know how hard it is some days.

Thanks, Kim