Prednisone got me out of bed, should I continue?

[bertiedog]

I recently found my diaries from 2001 when I hit menopause and 2002. I couldn't quite believe the difference

I was just about managing to lead a bit of a life having moved to a low carb diet plus there were lots of rest periods but by 2002 everything was way worse and I couldn't go on as I was. That is when I had the testing and saw the private Endo, so although I had Lyme disease all the time which was causing me big issues (it was diagnosed as ME/CFS) my body could sort of just about cope but once menopause hit my adrenals and thyroid just couldn't cope at all so within a year I was in a bad way virtually every day. Once I got on hydrocortisone at around 15 mg a day plus 2 grains dessicated I felt human again.

Obviously my endocrine system was severely hit by the menopause, it was the straw that broke the camel's back so to speak.

Pam

 

[Woolie]

Interestingly, @bertiedog, I'm just around menopause now - not quite there yet - and also experienced a big decline recently. Hence the reason for going on the prednisone. I wondered if menopause had something to do with it too.

Good, too, that the HC worked. That's really useful to know, thanks. How are you now?

 

[Rlman]

I have had an interesting experience with florinef. I started on a quarter of a tablet, and experienced immediate remission type improvement from day 1, marred only by worsened insomnia and a tendency towards being hyper. Surely this is too quick for blood volume effects and must be steroid type remission? what do you sciency people think?
OTH

could be adrenaline causing all those symptoms

 

[Wayne]

I am now committed as doubt I've retained any residual cortisol production.

Hi @CBS, my understanding [per Jeffries] is that normal cortisol production is about 40 mg/day. So if you've been taking less than 40 mg HC / day, [15 mg HC in your case], then your residual cortisol production has most likely stayed intact.

The best scenario would be to slowly come off it over a few months, without relapsing, but I just don't know what'll happen yet.

Hi @Woolie,

I've not read this whole thread, but did want to mention I once heard about a strategy of taking supplemental prednisone for 2-3 days or so [high dose], and then taking a break for 4-5 days--and then repeating indefinitely. Apparently, ongoing 4-5 day breaks keep the adrenals from overcompensating (down regulating normal cortisol production). -- Just a thought.
-
BTW, I've taken 20 mg. HC daily for almost 20 years now, and has worked really well for me. Took me from about 5% functionality to about 20%--very dramatic. Couldn't walk before I started; I now walk regularly.

 

[Woolie]

That's interesting, @Wayne! I seem to remember this kind of cortisol replacement treatment was really touted by the psychobabblers in the 1990s, because they thought we were all having some sort of cortisol production crisis as a result of our "prolonged psychological stress". Some of the studies looked really promising, with a good number of patients responding to HC. But then the babblers all went quiet on it, I'm not sure why.

But with all this current interest in auto-immunity, it does make sense to revisit this issues, since corticosteriods are first line treatments to reduce "flares" in all kinds of AI diseases. They are just really good immune suppressors it seems... and that might be just what some of us need.

 

[catly]

Interesting thread. I think menopaus triggered my MECFS, and either caused or escalated hashimotos which has left me hypothyroid. I've never taken a steroid though so can't comment on that.

 

[SDSue]

I recently found my diaries from 2001 when I hit menopause and 2002. I couldn't quite believe the difference

I was just about managing to lead a bit of a life having moved to a low carb diet plus there were lots of rest periods but by 2002 everything was way worse and I couldn't go on as I was. That is when I had the testing and saw the private Endo, so although I had Lyme disease all the time which was causing me big issues (it was diagnosed as ME/CFS) my body could sort of just about cope but once menopause hit my adrenals and thyroid just couldn't cope at all so within a year I was in a bad way virtually every day. Once I got on hydrocortisone at around 15 mg a day plus 2 grains dessicated I felt human again.

Obviously my endocrine system was severely hit by the menopause, it was the straw that broke the camel's back so to speak.

Pam

Hi Pam, I know I've asked you this before, but one more time if you don't mind? (speaking of mind, I miss mine)

How did you implement your hydrocortisone treatment? If i remember correctly, you did this with very little testing or doctor help?

Mine are low and I'm on thyroid, so I need to address this next. Do you have some resources? Thanks so much!!!

 

[nandixon]

@Woolie

If you don't mind, I'm curious what a couple of your blood values are, if you know them (preferably before and after prednisone treatment), to see if there might might be a marker for the beneficial effect prednisone has had in your case. Probably wishful thinking, but you never know.

First, calcitriol. Have you had this tested? (Prednisone can lower high calcitriol levels.) And does supplementing vitamin D make you feel better or worse?

Second, alkaline phosphatase. I'm sure you'd have had this tested. (Prednisone can induce ALP and potentially increase low levels of that enzyme.)

Thanks!

 

[Woolie]

@Woolie

If you don't mind, I'm curious what a couple of your blood values are, if you know them (preferably before and after prednisone treatment), to see if there might might be a marker for the beneficial effect prednisone has had in your case. Probably wishful thinking, but you never know.

First, calcitriol. Have you had this tested? (Prednisone can lower high calcitriol levels.) And does supplementing vitamin D make you feel better or worse?

Second, alkaline phosphatase. I'm sure you'd have had this tested. (Prednisone can induce ALP and potentially increase low levels of that enzyme.)

Thanks!

Gosh @nandixon, I just don't know! The only blood tests I've had done are routine ones, and only then, I haven't been told about them unless they're a concern (maybe I should have asked, but I do try to pick my battles....). The only thing I know of that is sometimes elevated - and only sometimes - is C-reactive protein. And only a bit, nothing like what you'd see in inflammatory disease.

The only other thing I can add is that the doc has also put me on risedronate (to prevent osteoporosis) and colecalciferol (which is a vitamin D supp). I only have to take the colecalciferol once a month, and it seems to have had no particular effect, good or bad, so far.

It might help to say that the therapeutic effects of the pred are rapid for me - after the first dose, I felt an improvement about 10 hours later. Same with dropping the dose - after dropping by 2.5-5mg in the morning, I feel a little worse by the evening.

The prednisone has given me back my life, and saved me my job. So, great! The side effects suck (mainly puffy face, arms and back), but all are nothing compared to being holed up in bed full-time, which was how it was for the two months before I started on the pred. But I'm aware its not safe to take long term, and I'm anxious to get off it. So far, have managed to wean down from 40mg to 25mg, but further drops have brought the worst symptoms back. It might be a long road yet to get to a safe long-term dose (which I'm told is 10mg or less).

 

[nandixon]

Thank you @Woolie, that's all good information. I hope it keeps working for you.

 

[Gingergrrl]

@Woolie Sorry if missed this but did you take Cortef at any point or start directly with Prednisone?

 

[Woolie]

@Woolie Sorry if missed this but did you take Cortef at any point or start directly with Prednisone?

Hi @Gingergrrl, no, I haven't taken cortef. I think its supposed to have a very similar effect, only one quarter of the potency, so you need a bigger dose for the same effect.

 

[Gingergrrl]

Hi @Gingergrrl, no, I haven't taken cortef. I think its supposed to have a very similar effect, only one quarter of the potency, so you need a bigger dose for the same effect.

Thank you and I was just curious. Am taking Cortef now and building up the dose and so far it is very helpful. I did not know it was 1/4 of the potency of Prednisone so that must be some strong stuff! Right now just taking 2.5 mg 2x/day but will taper again up tomorrow. Best wishes to you on your downward taper.

 

[Woolie]

Thank you and I was just curious. Am taking Cortef now and building up the dose and so far it is very helpful. I did not know it was 1/4 of the potency of Prednisone so that must be some strong stuff! Right now just taking 2.5 mg 2x/day but will taper again up tomorrow. Best wishes to you on your downward taper.

Interesting. I think our very different doses probably reflect the different goals of our doctors. Your dose is probably intended as a replacement dose because your own cortisol production is a bit low. Mine's a kind of desperate last ditch attempt to shut down my crazy immune response for a bit so I can go back to work!

 

[Misfit Toy]

@bertiedog -perimenopause has been the straw that broke the camels back for me. From living to bed and pain. Adrenals crashed.


Cortef...I can't take. Makes me psychotic. Prednisone...I sometimes love it, sometimes, not so much.

 

[Gingergrrl]

Interesting. I think our very different doses probably reflect the different goals of our doctors. Your dose is probably intended as a replacement dose because your own cortisol production is a bit low. Mine's a kind of desperate last ditch attempt to shut down my crazy immune response for a bit so I can go back to work!

I am past the point of ever working again and the Cortef is to boost my adrenals, give me energy, hopefully increase my BP which would be great and hopefully reduce the allergic/mast cell reactions that I am having which would be a miracle. So far it is a great med for me with no issues but I am on a low dose.

 

[Misfit Toy]

@Gingergrrl -the beautiful part of this illness..choke! I used to be able to take Cortef. Now, I am so anxious on it, I'm paranoid! ?? Ugh.

 

[m1she11e]

Prednisone ALWAYS help me. It is fairly miraculous but I wont take it ongoing. The first time I had it for a tooth infection along with antibiotics. I felt SO much better. I thought it was the antibiotics originally because I had tried the physiological dosing of Cortef and hated the way I felt on it. I would have scattered energy and then crash. The second time I got Prednisone it was without antibiotics and it was amazing. I have a little stash of 10mg tablets. (Not for long) and on rare occasion when I really need to get through the day I take one. I get the wired energy but not as bad as Cortef (odd as it sounds) and just feel better in general. If I have numbness it gets so much better on Prednisone as well. I sleep way better at night as long as I don't take it after 3.00. I feel better the very next day too even if I don't take another dose.

I wont take Prednisone ongoing. I know it is mainly helping because its anti-inflammatory. I have a very low white cell count and am on anti virals so I don't want to knock my immune system down with Prednisone. I assume some of my immune system is high and some is low. Anyway....interesting how we are not all helped by it. Interesting how in my case it makes me feel better in general where Coref just makes me wired and then crash.

Must be a piece of the puzzle in some way....

 

[Woolie]

Prednisone ALWAYS help me. It is fairly miraculous but I wont take it ongoing. The first time I had it for a tooth infection along with antibiotics. I felt SO much better. I thought it was the antibiotics originally because I had tried the physiological dosing of Cortef and hated the way I felt on it. I would have scattered energy and then crash. The second time I got Prednisone it was without antibiotics and it was amazing. I have a little stash of 10mg tablets. (Not for long) and on rare occasion when I really need to get through the day I take one. I get the wired energy but not as bad as Cortef (odd as it sounds) and just feel better in general. If I have numbness it gets so much better on Prednisone as well. I sleep way better at night as long as I don't take it after 3.00. I feel better the very next day too even if I don't take another dose.

I wont take Prednisone ongoing. I know it is mainly helping because its anti-inflammatory. I have a very low white cell count and am on anti virals so I don't want to knock my immune system down with Prednisone. I assume some of my immune system is high and some is low. Anyway....interesting how we are not all helped by it. Interesting how in my case it makes me feel better in general where Coref just makes me wired and then crash.

Must be a piece of the puzzle in some way....

Interesting, and I totally understand you know wanting to overdo the prednisone, @m1she11e. The worry is that by shutting off our immune reactions we could be leaving ourselves even more open to whatever underlying infections might be there.... But then again, if our immune systems are exhausted, maybe giving them a break to recoup might not be a bad thing? It all just guesswork till we find out more about what's going on.

That's interesting that you weren't as "wired" on pred as on cortef. I guess they're not exactly the same. I sleep fine too on anything up to 30mg, probably better than without it, because I have less ME symptoms keeping me awake.

 

[bertiedog]

Hi Pam, I know I've asked you this before, but one more time if you don't mind? (speaking of mind, I miss mine)

How did you implement your hydrocortisone treatment? If i remember correctly, you did this with very little testing or doctor help?

Mine are low and I'm on thyroid, so I need to address this next. Do you have some resources? Thanks so much!!!

I had saliva tests from 2001 and 2002 when I saw the private doctor who turned out to be a qualified Endo. I didn't kow that at the time. He put together my test results for cortisol, DHEA and thyroid altogether plus my symptoms and history and told me I needed to be on h/c and dessicated thyroid. I think the tests were done through Genova.

It turned out to be very difficult to get the right balance and amounts of meds, I did do it too quickly and got bad reactions but once I got to 12.5mg h/c in the morning I could feel a big difference, my body loved it whereas usually I had horrible response to meds.

After 6 months I had improved but was still getting nasty symptoms at night so Dr Jones said I would be better with a longer acting steroid and gave me 5mg Prednisolone. It was great, I took it in one dose at first and later in a divided dose and over the years I have moved up to 6mg Pred and often just 2.5 mg h/c around 3 or 4 pm. When it is hot weather I need an occasional dose of fludrocortisone too but never in the winter.

Over a year I lost over 14 lbs in weight on this regime and have stayed slim now since 2003. My only side effect is very slight fluid retention in my ankles.

Because I was diagnosd with borreliosis last year I guess that explains my low white blood cell count which has been that way for as long as I can remember. If anything my immune system was worse before the steroid and thyroid meds but it is still on the weak side though improving with the herbals in the Cowden protocol. My average steps a day are now around 8400 whereas they were around 5500 when I started the protocol last September so I am definitely making very good progress and feel very well a lot of the time something would never happen if I wasn't on Pred and dessicated thyroid.

Pam