I'm starting this topic because I saw a couple of posts on this today, so thought I would address it here. I know that our moderator, CajunGrl, has also discussed this in the past, since she has to take steroids for an autoimmune condition as well. It's no fun having to follow conflicting protocols!

The quote below is from the thread started by Simela (Sore Soles--Lyme or Bartonella???):

Missy Joy said...
This is off topic - but I just read through your list nasalady at the bottom of your post. You are taking Prednisone while having Lyme? That's a steroid if I'm not mistaken. If that is the case, you might want to study on that!

Apparently steroids make Lyme and Co bugs much stronger and harder to kill. Sorry to butt in on your post on foot pain...

Hi Missy Joy,

Yes, I'm very aware of the issues, but have no choice. I have been on prednisone and Imuran (another immunosuppressant) for more than two years now for autoimmune hepatitis, lupus, RA, etc. I HATE prednisone (I've gained a lot of weight on it) but have to say that it saved my liver from total destruction! I cannot just stop taking prednisone. You might want to Google "Addisonian crisis"; people who have been on prednisone for long periods of time who just stop taking it can actually die. Your adrenals stop working (go to sleep) because the prednisone takes over their job, so to speak.

I was just dx with Lyme this past January, whereas I was dx with fibro + 3 AI diseases in 2008. So I've been under treatment for the AI conditions much longer.

The goal is to (eventually) get me off the pred, and I'm now down to 5 mg, which is great! But when I try reduce it further, I risk flare-ups of the lupus, the AI hep, etc.

It's a balancing act, and I'm always hoping to be able to continue to reduce the dosage to zero. I believe that I will eventually. I'm not so sure that I will be able to get off the Imuran, but you never know!

take care,
JoAnn

From reading, I think the whole thing with Prednisone and Lyme is a complicated issue. Since many MD's don't understand or are not educated adequately about Lyme, they tend to want to use steroids (injections, oral) for joint pain that they attribute to autoimmune or inflammatory arthritis. Their education and training tells them that steroids are what to use for this when other anti-inflammatories (NSAIDS) don't help enough. This is why I believe it is important for each of us to discuss this issue of steroids with our LL physicians so we know their take on the use of steroids in the setting of our own individual case of Lyme. There are situations, such as when one has been diagnosed with autoimmune disease, or with adrenal insufficiency, or other acute inflammatory situation, that steroids are not totally a bad thing to use (there are worse meds than Prednisone...).

Razzle said...
This is why I believe it is important for each of us to discuss this issue of steroids with our LL physicians so we know their take on the use of steroids in the setting of our own individual case of Lyme. There are situations, such as when one has been diagnosed with autoimmune disease, or with adrenal insufficiency, or other acute inflammatory situation, that steroids are not totally a bad thing to use (there are worse meds than Prednisone...).

Thanks for commenting Razzle....I always value your input! Absolutely we need to discuss serious meds like prednisone with ALL of our doctors, including our LLMD.

My rheumy wanted to inject my painful spinal regions (L3-L4, L4-L5) with steroids, but my LLMD said no way!

It's hard to think of many meds that are worse than prednisone, but one of them has definitely got to be clindamycin! :(