Adrenal problems are complicated and then when you add in the lyme and other infections it's a nightmare to try and manage. I've been working on finding the best dose & type of steroid medication for years now. The good news is I have found something that works for me and has given me back a quality of life I haven't had in Years.
"low temp but somedays feel like I have fever but feet cold not hands."
I have run a fever with Low cortisol, but lyme can also cause fever so it is hard to separate.
"my sugar runs hig but not if I am not eating sugar stuff."
Generally when you have adrenal insufficiency you have reactive hypoglycemia which will cause high blood sugar after you eat sugar. Best thing to do is stay away from sugar.
"actually now I am not sure if I am low or high steroid???"
Since you are taking the prednisolone once a day you are probably both Low and High. In the morning 10 mg probably feels like too much and in the afternoon/evening you will be running low.
"I'm gonna watch sugar and how often I feel overly warm that doesn't happen when I have the hormone est test prog under control"
Trying to follow individual symptoms to figure out if you are over or under treated for your steroids is Very difficult. You really need to look at how you feel overall. For example: When I didn't have enough steroid meds in the afternoon around 3pm I would start feeling achy, tired, sometimes like I had fever, but temp would be low, feel cold, nausea, sometimes diarrhea, hurt all over, joint pain, headache, etc. So in this example one of the ways you can figure out if the symptoms are from low cortisol is to take prednisolone in afternoon and see if the symptoms get better.
"I take 2 5 mg prednisilone in the morning. I take the prednisilone because it suppose to be easier on liver."
May be a typo...are you on 25mg or 10mg? 10mg is equal to about 40mg Hydrocortisone and not too high, but 25mg is alot.
"I was once on dexameth and the doctor over dosed me so bad. it was before taking that special cortisol test when I was on just cortisone they had me take dex for 3 days before and he wrote the script wrong."
Sorry to hear about this...it's a shame but you really have to check the scripts I have had them write mine for too much, too. Dexamethasone is stronger and lasts longer than prednisolone. If you take too much Dex it can be Very Uncomfortable.
"but isn't dex 10 times stronger than prednisone?"
.75mg of Dex is equal to about 5mg of prednisolone, but dex lasts 36-56 hours so really it is stronger because it overlaps. Here's a comparison chart. http://www.nadf.us/tools/adrenalhormone.htm
"do you take it? It is so hard to even get into a endo now I just have a gp writing my prednisilone scripts. of all the steroids which is the better combo?"
I was taking prednisolone by itself, which was better for me than hydrocortisone, but I still felt low cortisol symptoms in afternoon and at night. It seems that when you have chronic lyme you need more steroids than most and you need a longer acting steroid.
Now I am taking .25mg of Dex And 5 1/2mg of prednisolone a day. I recently made contact with a couple of ladies who have lyme and adrenal insufficiency and they both said that combining Dex and hydrocortisone had worked for them. I started this a few weeks ago and feel better than I have in YEARS!
I take the .25 Dex at night and then take Prednisolone -2 1/2mg at 8AM, 1mg at 11am, 1mg 3p, 1mg 5:30pm. The reason this works for me is because the Dex lasts longer, so when the prednisolone would have run out or low now the dex fills the gaps.
"i am wondering if i need the florineff too and little cortisone??"
hydrocortisone is the same type medication as prednisolone, but does Not last as long. I would not recommend that you try hydrocortisone. Florinef is to replace aldosterone and help balance electrolytes. You need to have sodium, potassium, and renin tested to see if you need florinef. If you feel dehydrated all the time you may need florinef. Have you had your aldosterone tested?
"so what is the dose of dexamethazone if I am on 10 mg of prednisilone??"
I think most people who try dex by itself take .50mg, but I am not sure. I think it varies from person to person. The only problem with taking dex by itself is that it lasts so long that it can end up being too high at night and keeping you awake. That is why I am combining the dex and prednisolone.
"I am gonna try AM and PM on the prednisilone now.
what time is best in afternoon? before 3 pm? after dinner?"
Razzle has good explanation of times. Your body naturally makes the most cortisol in the morning and then it tapers throughout the day until it is very low between 11p and 2am and then starts to climb at about 4am.
If I was going to take prednisolone twice a day I would take 7mg at 7AM (put it by your bed and take it immediately when you get up) and at 3mg at 3pm. Or You might consider taking it 3 times a day -5mg at 7AM, 3mg at 11am or 12, and 2mg at 3pm. What works for each person is different. You just have to try different times and amounts and see what works for you.
If you take a good amount for you at the right times you will probably end up taking less overall than you are on now. It is not easy to find the right steroid med and the right dosing schedule.
"also i do come up on the blood work as LOW cortisol while on the prednisilone and was wondering about that. it is another reason why i don't take the thyroid because I tried that before and got too nutty. that was before the prednisone."
Prednisolone does not show up in the cortisol blood test, so if your levels are low that means that your body is NOT making enough cortisol and you need the steroids.
Yeah, Treating the thyroid will not work until you get the steroids balanced.
"is dexameth any less damaging than the prednisone?"
??Damaging?? I don't know what you mean?? When your body does not make cortisol (steroids) you Need to take them to replace what your body is not making! If you have adrenal insufficiency and you quit the steroids you may die. The steroids are supporting your immune system, Keeping your blood pressure from dropping too low, Keeping your blood sugar level, and many other Vital functions.
I don't know what all tests you had run to diagnose you, but if you have been properly diagnosed then you Have to take the steroids, getting off of them completely is not an option. There are some side affects to taking too much steroids (wt. gain, stretch marks, moon face) but this only happens if you are taking Way too much.
I have had Zero luck with endos, I now go to a fibro & fatigue center doctor. I think you just have to find a dr. that is willing to listen to you and help you try different combinations of doses and/or meds until you find the one(s) that help you feel good.