Should I go back on 1 or 2 mg prednisone due to fatigue?

[Snerd]

Hello friends! After a four year term of GCA, while doing a very slow taper of prednisone l have been off of prednisone for several months. Occasionally if I’m very fatigued I take a 1 mg. I have been very fatigued for the last few days and I’m wondering if I should maybe go back on a daily 1 mg or increase prednisone to 2 mg. I am on a low glycemic, low carb, no sugar diet with added supplements. I exercise daily at the gym. With this diet I have lost several pounds. I intentionally try to add to my diet to gain weight.

In February, due to a breast cancer diagnosis, l had a lumpectomy . There was no lymph node involvement and I have not had chemotherapy or radiation. I have had frequent blood tests and doctor visits and there is no recurrence of cancer.

So I’m wondering should I go back on prednisone for a while. Maybe my adrenals have just never come back. I had them tested a year ago. They had not come back at all at that time. What do you do if they never come back? Thank you for your thoughts! My best to all of you!

[123-go]

Hello, Snerd. First of all I’d like to comment on your successful lumpectomy- great news for you. Regarding the fatigue you are experiencing I suggest that you have another test to see how well - or not- your adrenals are functioning. After stopping prednisolone it can take up to a year or maybe more for them to be up and running. I would strongly advise you to see your doctor/endocronologist.

[Snerd in reply to 123-go]

Thank you 123-go!

[PMRpro Ambassador]

If they NEVER come back - you get pred or hydrocortisone as a replacement therapy. However - yours are definitely doing something or, frankly, you wouldn't be asking the question! You would be so ill you couldn't - or possibly even dead! It is reckoned that it takes up to a year for the adrenals to settle into their more normal routine even after you are off pred altogether.

If you want to gain weight - why are you on a low carb diet? That is used to keep weight gain with pred down - cut carbs too much and you lose weight, that is the idea of that eating approach.

If you go back on pred, that will slow down the adrenal function recovery. You have also to bear in mind that you are 4 years older than you were pre-GCA - unfortunately you aren't likely to be like you as a just over 70-year old! And you have had a serious system illness which was treated with a heavy duty medication for 4 years. Time stands still for no-one.

healthunlocked.com/pmrgcauk......

Maybe some pacing might help the fatigue problem? More than one way to skin a cat they say!

[Snerd in reply to PMRpro]

I appreciate your words, Pro! You along with others are advising me not to go back on prednisone, and I will take that advice. Regarding the low carb, low glycemic diet, it is advised to prevent any further cancer, or to “starve” cancer cells, as they feed on glucose. However, I do have carb intake in the form of complex carbohydrates. My diet has changed dramatically since my resolve to try to beat cancer returning. I no longer eat a lot of ice cream, or bread, which I used to love. So I have lost weight. It shows in my (face which I hate!) Vanity, Vanity…..

Thanks for explaining more about the adrenals and also your comments about the seriousness of the effect of GCA on my long term constitution. And you are absolutely right,I am older. I guess I have to accept that huh! 😑

Thank you, Pro!

[DorsetLady PMRGCAuk volunteer]

hi,

As others have said, it takes time for adrenals to be back in full working order after taking Pred long term, and your recent procedure will have put extra stress on them.

They are working, albeit I not as well as they should be, so it might be worth getting another test to gauge what is the state of them now.

It’s probably just a matter of time, and maybe a bit more attention to how much rest and recovery compared to exercise you are getting.

[Snerd in reply to DorsetLady]

Thank you Dorsett Lady! I will check into getting another test for the state of my adrenals.

[SnazzyD]

Take heart, if your adrenals were not back you wouldn’t be going to the gym without an ambulance being called! If you can go about your day without feel crushingly tired you’re not doing bad! It took a good 18 months after I stopped Pred for mine to be reliable but others are different and you have to find your level which can be a bit of a changing sand on any given day.

My advice would be, rather than take an extra 1mg to feel better, rest instead. This is what your body needs to learn that it has to make its own cortisol instead of being let off the hook by it being given extra Pred that it doesn’t have to make. I found cortisol need isn’t a consistent level and can be affected by mental stress, general constitution, physical stress, weather, etc. Your excellent cancer recovery shouldn’t be underestimated either. Adapt your activity to your adrenal low, not the Pred unless you are feeling worse even with resting. A cortisol test will help what’s going on too.

Regards diet, why are you on a low carb diet if you are trying not to lose weight?

[Snerd in reply to SnazzyD]

Thank you so much, Snazzy! Yours is a great reminder that many things contribute to fatigue. And I will have another cortisol test. As I mentioned to Pro, my low glycemic diet Is for the purpose of preventing cancer, which feeds on glucose. But I am trying to increase complex carbohydrates to gain a few pounds.

[SnazzyD]

Take from this or not, but having had cancer and the works and a poor prognosis in 2004, I have been down the line of trying to exert control over return of cancer. I also worked with people, many after their treatment had finished, facing the precipice that is life with cancer threat and no more input that feels like something is being done.

It is so easy to pick on something or things that might help and they can become the focus because not to do them feels like opening the door to cancer. There is no shortage of logical sounding prevention strategies but we have no idea what actually caused the Ca in our body, a bit like GCA. The cancer is the big monster and it is easy to become non-holistic in our approach such that body can be put under stress (also not good) or given conditions that aren’t optimal. We can become blind to what our body is screaming out for because fear of cancer is too compelling to consider that what we are doing isn’t being received well. This can be exercise programs, dietary restrictions or loading, supplements etc. and the list can end up quite long. Personally, I ended up with a long list of supplements recommended by various experts along the way and was eating a diet that didn’t suit my body at all. Cancer ‘feeds’ on glucose because of the high energy need of fast growing cells. If you are losing weight you may be making fuel less readily available to a cancer but your immune system and other functions too. Some say it is the insulin spike from carbs that fuels cancer, but that is prevented without very low carbs if you are not on Pred. Your exercise level and/or carb restriction may also be putting enough stress on your body such that the cortisol needs are up more than you can service. The body hates insufficient cortisol as evidenced by symptoms. It’s all about balance and perversely one can end up so focused on the fear of cancer growing that we forget to listen to our body and give it what it needs as a whole and actually making peace with it.

Sorry if I have spoken out of turn and feel free to discard these thoughts if they don’t resonate with you.

[Snerd in reply to SnazzyD]

Snazzy, I do appreciate your thoughts and your story of surviving cancer. I will consider what you have said. Thank you so much.

[PMRpro Ambassador in reply to SnazzyD]

I think that is a brilliant reply - so on point. xxx