Addison's Disease: Tired of being tired

Posted by spice @spice, Nov 26, 2017

I have had addisons disease for 5 years treated with prednisone I can not taper to the 5 mg and have been on 40 mg for three years also contracted lymes 6 years ago salmonella 10 years ago I know I am gradually slowing down but took the flu shot a month ago and I have absolutely no energy now and everything is just sore and achy. Tylenol helps some to push through and exercise helps to when I can. involved with agriculture so chores always have to be done but some days its a chore. I blame the flu shot for now but there are so many factors to consider. The prednisone has me pre diabetic. Thoughts would be appreciated.

@johnbishop

Hello @spice, I’m also not real happy about taking prednisone for the second time around with my polymyalgia rheumatica (PMR) but it’s pretty much the only thing that makes the pain, stiffness and inflammation go away. I started at 20 mg last year in September and am now at 3 mg having tried twice to drop to 2.5 mg. My last round with PMR took me 3 years to taper off of prednisone. The autoimmune system has a lot of unknowns for all of us with one of the many different autoimmune diseases. To make it even more complex, each of us react differently to treatments and therapy. All that said, you are on the right course of asking questions and learning as much as you can about your disease. You are your best advocate and the more you know, the better you can work with your doctors to find a treatment that hopefully works for you.

I see that Teresa (@hopeful33250) has already given you the link to Mayo Cinic’s information on Addison’s disease along with appointment information if that is in the realm of possibility. I’m tagging @kanaazpereira and @lisalucier as they may be able to offer some suggestions.

I found an interesting article in the European Journal of Endocrinology that may be helpful:

MANAGEMENT OF ENDOCRINE DISEASE: Regenerative therapies in autoimmune Addison’s disease:
http://www.eje-online.org/content/176/3/R123.short

I found the link using the Google Scholar search engine (https://scholar.google.com/). It has some advantages over a normal search engine in finding medical and drug related information.

Keep asking questions and learning as much as you can.

John

Jump to this post

always have been on their tapering schedule, biggest hurdle I cross is the care of my animals and my household chores I can only be down so long before they need attention and I don’t receive much assistance there and yes we start 1mg at a time. I am pretty convinced my body will never produce cortisol again its just trying to manage the meds.

REPLY
@johnbishop

Hello @spice, I’m also not real happy about taking prednisone for the second time around with my polymyalgia rheumatica (PMR) but it’s pretty much the only thing that makes the pain, stiffness and inflammation go away. I started at 20 mg last year in September and am now at 3 mg having tried twice to drop to 2.5 mg. My last round with PMR took me 3 years to taper off of prednisone. The autoimmune system has a lot of unknowns for all of us with one of the many different autoimmune diseases. To make it even more complex, each of us react differently to treatments and therapy. All that said, you are on the right course of asking questions and learning as much as you can about your disease. You are your best advocate and the more you know, the better you can work with your doctors to find a treatment that hopefully works for you.

I see that Teresa (@hopeful33250) has already given you the link to Mayo Cinic’s information on Addison’s disease along with appointment information if that is in the realm of possibility. I’m tagging @kanaazpereira and @lisalucier as they may be able to offer some suggestions.

I found an interesting article in the European Journal of Endocrinology that may be helpful:

MANAGEMENT OF ENDOCRINE DISEASE: Regenerative therapies in autoimmune Addison’s disease:
http://www.eje-online.org/content/176/3/R123.short

I found the link using the Google Scholar search engine (https://scholar.google.com/). It has some advantages over a normal search engine in finding medical and drug related information.

Keep asking questions and learning as much as you can.

John

Jump to this post

Hello @spice

I appreciate your letting us know more about some of your physical responsibilities, “care of my animals and my household chores.” When we have chronic illnesses, physical activities do drain our energy reserves much faster. You mentioned in an earlier post that you have show dogs, while I don’t know anyone who has show dogs (I have only had household pets)I can certainly understand the extra care, time and attention that they would need.

I’m going to present some questions that might be helpful to you in thinking through this situation that you find yourself in. Please do not feel that you have to post an answer back to Connect, just use these ideas to help you work through your responsibilities.

You say that you don’t receive much assistance. What type of help have you asked for? Who might be available to assist you? Is there anyway that you can reduce the number of animals that you care for?

Also, what type of exercise program do you have in place right now to help you deal with stress and anxiety? I understand that when fatigue is paramount, exercise is the last thing we think might help – but sometimes it can restore energy by helping us relax.

Like I said, please feel free to think about these thoughts and use them for a “plan of action” if you will.

Teresa

REPLY

I’ve had Addison’s since 1979. I am taking hydrocortisone, 10 mg morning, plus 5 at lunch and 5 at supper. I also take fludrocortisone 0.5 mg every other day. This seems to work for me. I have a fairly good energy level for being 76 and used to work 50 hour weeks when I was still working. I only need to see my endochronologist once a year. I definitely need extra cortisone when I am sick. Hope this is helpful.

REPLY
@judy5140

I’ve had Addison’s since 1979. I am taking hydrocortisone, 10 mg morning, plus 5 at lunch and 5 at supper. I also take fludrocortisone 0.5 mg every other day. This seems to work for me. I have a fairly good energy level for being 76 and used to work 50 hour weeks when I was still working. I only need to see my endochronologist once a year. I definitely need extra cortisone when I am sick. Hope this is helpful.

Jump to this post

Addison's wins

REPLY

Hi, @spice — wondering how things went with your tapering the prednisone? Are you still feeling tired often?

REPLY
@judy5140

I’ve had Addison’s since 1979. I am taking hydrocortisone, 10 mg morning, plus 5 at lunch and 5 at supper. I also take fludrocortisone 0.5 mg every other day. This seems to work for me. I have a fairly good energy level for being 76 and used to work 50 hour weeks when I was still working. I only need to see my endochronologist once a year. I definitely need extra cortisone when I am sick. Hope this is helpful.

Jump to this post

Hi, @judy5140 — wanted to touch base and see how things are going with your Addison's?

You'd mentioned having a fairly good energy level for being 76 years old. Wondering if you'd have any tips for keeping your energy level up?

REPLY
Please login or register to post a reply.