Lyme/steroids and Addison's/Adrenal Insufficiency/severe Adrenal Fatigue

Hello everyone I'm new here. I take 4 mg of medrol daily for 3 years now. I saw an old post here posted 4 years ago regarding lyme and

Addison's and adrenal insufficiency. Those people never reported severe muscle atrophy and severe connective tissue loss.

I am dealing with severe muscle loss. Almost like weekly I lose connective tissue it seems. Especially what connects my legs to my hips and arms to my shoulders.

It's VERY alarming and I can't figure out why the steroid would do this so quickly. According to my journaling it is the steroid. When using my thyroid med the muscle loss stops and progresses more slowly.

I don't get it. I started the steroid because my cortisol was very low, not Addison's, but low, not AI, the steroid helped me get out of bed but it's also caused me to lose a lot of muscle.

MrHealthy,

I should have been in bed 3 hrs ago, but what the heck. Here goes! I couldn't resist your post because I have first hand experience with this issue and I have done a lot of research. Having said that, I am not a physician, and you you need to hopefully find an LLMD that is competent in both treating your illness and hormone replacement therapy.

My daughter was very ill for 6 years. Her Adrenals were undoubtedly stressed for an equivalent amount of time. She eventually became well. She resumed her competitive swimming but she noticed that her energy level still was wasn't quite up to normal even about 2 years after she appeared to be completely recovered from her illness.

After both saliva and blood tests it was determined that she had a fairly low level of cortisol. She was given an ACTH Challenge Test which showed that there were no problem with her Adrenals per se, but that she was not receiving enough ACTH hormone from the Pituitary Gland for normal cortisol production. This is called Secondary Adrenal Insufficiency. An MD prescribed 50 mg./day of bio-identical hydrocortisol. This is a bit more than a normal replacement level, but he took into account the very strenuous swimming program that she is involved in. Also she is 6'2" and 185 lbs. After about a month she had gained 16 lbs, retained a lot of water, looked puffy, had the "moon face", and was very thirsty all the time. Overdose messes up electrolyte levels and ratios. Being alarmed I went into research mode and found out that this was an overdose situation. We weaned her down by 5 mg./ week and the symptoms went away but she was still able to perform in the pool. She leveled off at 25 mg/day, and has stayed at that level for almost 1.5 years now.

I wasn't familiar with Medrol and did a bit of research for you. Medrol is in the same class of steroid as the Hydrocortisol. It is a Glucocorteroid. It also is a Catabolic Steroid. This classification makes a distinction from the Anabolic steroids. The Anabolic steroids are what many bodybuilders take to increase muscle mass quickly. The Anabolic Steroids increase muscle, bone, and other tissue mass. On the other hand, the Catabolic Steroids decrease muscle, bone, and other tissue mass. We must not lump all steroids together without distinction.

So far there is not necessarily a problem, but you have encountered a problem similar to my daughter's. It is clear to me that you maybe overdosing. Hmmm.... you say, but your dose is only 4 mg./day while my daughter's is 25 mg./day! Medrol is a Methylprednisolone. Its Glucosteroid Potency is 5-7.5 times that of Hydrocortisol. This means that this value must also be applied to any possible side effects from an overdose as well. OK, now that means that you are taking a dose equal to 20 - 30 mg./day of hydrocortisol. Still no problem, although that would be considered to be on the high side of a low-dose replacement amount.

There is yet another issue that needs to be factored in to understand the appropriateness of your Medrol dosage. Hydrocortisol has a half life of 8 hrs while Methylprednisoline has a half life of 18 - 40 hrs. Depending upon your dosing schedule you may have spikes when you have more hormone in your system than you could possibly be using. My daughter takes 3 doses/day and takes the largest dose immediately before her 2 hr. swim practice. We have tried to arrange the dose levels and times so that she never has excess cortisol in her system, but has a dose at the appropriate level and time so that she utilizes it and has no excess. This required juggling. Unfortunately the MD told her to take all 50 mg. once a day. This was a huge mistake. The dose was way too high and should have been spread out over the day.

Although I am very grateful that my daughter's MD prescribed the hydrocortisol due to low cortisol levels, I am not too impressed with his prescription of a dosage level far in excess of what she actually needed to function properly. The overdose was very obvious to us within a month and thanks to my alertness I took appropriate action. He had given no instructions as to possible side effects and what to look for. There wasn't yet enough time for noticeable atrophy of tissue. In the case of hydrocortisol, the potassium levels go awry as well as the sodium and potassium ratio. I don't know whether that is an issue with Methylprednisolone.

I took things into my own hands and corrected the doctors blunder. It would be poor and inappropriate advice to advise you to do the same thing. All I can say is that it is a very serious situation to take a possible steroid overdose for 3 years! Overdose will also suppress the immune system which is a no no especially for LD and Co. How in the world has it gone this far and the doctor has not even monitored you for side effects? I would run as fast as I could from that doctor if I were you. I don't want to scare you but you could have very serious and permanent effects from the overdose, if that is indeed the case.

Normal levels of cortisol are important. You will be sick if levels go either way- especially if you have LD!


Here is a link to an article that describes Medrol:

http://www.rxlist.com/medrol-drug.htm


Here is a link to Methylprednisolones in general:

http://en.wikipedia.org/wiki/Methylprednisolone


Here is a link to an article that has a potency and half-life chart of various Glucosteroids including Hydrocortisol and Methylprednisolone (chart in middle of article):

http://en.wikipedia.org/wiki/Glucocorticoid


You will need a physician that has skill in reducing the dosage level and mitigating the damage. The human body tends to resist reducing long term dependence on the hormones. Beyond that, it can create a very serious situation to reduce dosages from long term usage. I can't stress enough that you need a very knowledgeable physician in your situation. Please keep us updated. I wish you well.

Don

Post Edited (Heathersdad) : 5/14/2014 2:44:52 AM (GMT-6)

Here's the link to the discussion that I ran into when I did a search. It's from this forum too. Very insightful. I wonder if any of the participants on that thread are still around here because I sure would love to chat with them about their health.

https://www.healingwell.com/community/default.aspx?f=30&m=1719248

this is a wonderful discussion I am having my adrenals checked now with a saliva test. crossing my fingers but I feel it is going to be abnormal.

I am sorry about your muscle loss. I too due to inactivity and lyme my arms look like birds' wings so flabby my arms used to be thin and toned. please monitor your steroid dosages, and heather's dad you are great on the subject. thank you .