"Do you have a lyme doctor? does he know you are taking steroids?"
Yes AND Yes
"are you being treated for the lyme?? were you treated?very important your endocrynologist is speaking to your lyme doctor and they both googlelyme and steroids."
Yes I am being treated by LLMD since my diagnosis.
My dr. who treats the Addison Disease is a LLMD too! I am blessed.
I'm not sure about your referrence to my needing to google lyme and corticosteroids?? If you do not understand what addison's disease is...you can google it.
I am taking a Physiological dose of steroids for the addison disease...this is not to be confused with a Pharmocological dose of steroids that would be given to someone for arthritis or lupus or something like that.
There is much written about how one should not take steroids if they have lyme disease...however, addison disease means that my adrenal glands do NOT produce the cortisol that I REQUIRE to stay alive. Cortisol is vital for primary life functions, such as maintaining -blood pressure and blood sugar.
It takes knowledgable drs. to treat these 2 difficult, but for me, co-occurring diseases.
Great explanation for the difference btz "physiological" dose and "pharmocological".
Basically what I take is to replace the cortisol my body would normally be producing. Usually people who take steroids for arthritis or autoimmune diseases usually take much larger doses than what I am on and the purpose for these doses is to suppress the immune response...which would make it more difficult for your body to fight the lyme disease.
Thanks for your comments,
great expectations :-)
So you have addison's disease. Is it primary or secondary?
I have primary adrenal failure (aka addison disease) this means the problem is in the adrenal glands. Secondary means the problem is in the pituitary that sends a message to the adrenals to make cortisol.
JoAnne gave a great explanantion of "physiological" dose.
Yes prednisolone does not have to be converted through the liver like prednisone does. I am on methylpredisolone (name brand Medrol)...sounds like the same or very similar to what you are on.
I have been on quite a journey to get to this point... I was diagnosed with adrenal insufficiency in 2008. I was put on hydrocortisone (HC). my adrenals continued to fail until I was told that I now have addison disease, complete adrenal failure. I felt like I was on a roller coaster with the HC, never felt well. My dr. switched me to prednisone, which caused me to gain wt., get puffy face and I still did not feel well...so I was finally put on methylprednisolone (Medrol).
The Medrol keeps me stable for the first time! I feel better on it and I am not having constant low cortisol symptoms and addison crisis'.
My dr. says I will be on steroids for the rest of my life. The amount and/or brand may change, but the steroids keep me alive :-)
I still have the puffy face, but I'm not gaining wt. on the medrol. If you are on a dose that is not too much you shouldn't get the puffy face, although, hypothyroid can also cause puffy face.
If you do have addison (AD)or adrenal insufficiency(AI) then you Need the steroid medication. Much of the literature on lyme states that steroids should not be taken. The theory is that the steroids will suppress your immune system, but this is not true for those with AD or AI. Without cortisol your immune system dose not work correctly...with Too much cortisol your immune system does not work correctly!! So wthout an adequate dose of steroids an AD patient's immune system does not work well.
I'll get back to you in a bit with some links to med info supporting my above argument, but basically if your LLMD is telling you that the steroids are not bad for you they simply do not understand AD.
A few questions...
When were you diagnosed addison? How were you diagnosed?
What dose of prednisolone do you take now? what times?
How do you feel on this dose?
Have you had an addison crisis?
Do you have an injectable form of cortisone for emergencies?
Wishing you Well :-)
I so agree that having the right diagnosis and the right treatment is an awesome step towards Healing and Wholeness!!
You mentioned taking 40 mg...I have had to increase my dose after an addison crisis to 170mg, but it saved my life.
poly myalgia? I think this means muscle pain right? If so yes I have joint and muscle pain. I thought it was ALL from the lyme at first, but now I know that a great deal of the pain was from low cortisol! My muscles hurt all over and my joints ache like crazy when my cortisol is too low.
Here's my low cortisol symptoms from what I notice first on to actual crisis...
-heart beats harder, muscles ache, fatigue gets worse than normal, back hurts (where my adrenals are), headache (from blood sugar dropping), irritable, nausea, joints hurt all over my body, shaky, diarrhea, limbs feel like lead, can't think straight, depressed, crying, vomit, no energy to move if I wanted to, Hurt so bad I feel like a bus ran me over and no amount of pain meds makes any difference!
By the time I get to diarrhea I know I am in REAL trouble...If I get to the crying part I am definitely having an addison crisis! These symptoms vary for each person. Many people say they notice the crying as one of there early symptoms.
What do you notice when you have low cortisol?
BTW here's a great addison forum I recently found...very supportive and informative :-)
Hope your day is good,
I blamed everthying on the lyme for about a year and was miserable. In talking to my endo we decided to make some changes in my addison treatment to see if anything would help, and I started feeling Much, Much better.
Okay you mention going from 20mg to 10 in about 3 weeks...this really worries me! When you go down on steroid medication it should always be done very, very slowly. If you are on methylprednisolone or prednisone drs. reccommend tapering your dose down 1/2mg at a time. So you would go down by 1/2 mg for a week or 2 then you could try going down another 1/2mg.
"but I don't think you get an accurate read on your cortisol in a blood test if you are on prednisone or cortisone..do you?? don't you have to that special test with taking dexamethazone?"
I think what you are thinking about with the dexamethazone is the ACTH stim test. After you are on cortisone meds the ACTH stim test is no longer accurate, unless you switch to dex for 3 weeks before the test is given. However the ACTH stim test is only given to confirm addison disease, it is rarely done after the diagnosis.
My dr. looks at symptoms to treat addison symptoms accurately. I think hydrocortisone will show up in a cortisol blood test, but I'm not sure. Also my doc tests sodium, potassium, renin to help balance florinef, which I take because of a lack of aldosterone.
Here's some links that might be helpful
What time(s) do you take your prednisolone medication?
Hope your day is okay.
I agree that 20 mg is too much.
I am on 8 mg of methylprednisolone(name brand Medrol) to replace cortisol and 3 tablets of florinef to replace aldosterone.
If you get dizzy when standing, have trouble with dehydration, pee often or if your sodium & potassium are not good in your labs you may need florinef.
I'm glad your getting things figured out with the lymes. I know how frustrating and debilitating lymes can be (I haven't worked in 1 1/2 yrs).
I don't know what all the dr told you when you were diagnosed with addison, but forgetting a dose can be dangerous. I get absent minded so I have a pill reminder with an alarm on it for my medrol so I make sure and take it at the right times everyday. If you are only taking your pred once a day, you should take it first thing in the AM because your cortisol level is naturally supposed to be highest first thing in the AM.
I have my first dose in a pill reminder by my bed and I set my alarm for an hour before I want to get up, take my medrol and then sleep for another hour. This way the meds are in my system by the time I get out of bed.
Ah..allow me to introduce myself :-) I am 31 yr old female living in Texas, USA
Yeah it can be so hard to tell the difference btw lyme and adrenal insufficiency's symptoms. I also think in my case the lyme has continued to damage my adrenals through the past few years :-(
I'm glad you still have some adrenal function...I'd definitely test if you think they may be low and support them if needed. I just wonder sometimes how many people have lyme and don't realize that they also have some degree of adrenal insufficiency. It sure took me a while to get it all sorted out