WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

[TedBakerBoy]

People read and hear things about which they don't really know but form strong opinions based upon 'crowdthink', medicines included... . Straight from an Endocrinologist who now teaches at a prominent medical school, to me early on, after being unable to resolve some chest inflammation: 'here's an rx for deltasone , 10mg (brand of prednisone). Play around with these but every other day, and you won't get the symptoms you read about.'

This was short term, e.g. under 6 months. Cleared inflammation - no side effects. IMO. this is not to say use willy nilly, but judicious use like this isn't likely to make your appendages fall off nor turn you into a raving
druggie with serious side effects. When docs don't know the answers they sure as hell gamble on unknown meds the reps supply. In fact, truth be known, statistically, docs don't know how 50% -70% of maladies they see really got cured! Now, about forming your own opinion... .

I don't quite understand what you are trying to elaborate on with your word choice. Could you dum it down a bit for a Scotsman? lol.

 

[Stretched]

What I'm getting at is your opinion is what matters most, since you're otherwise getting mixed opinions on Prednisone, including from doctors who will either be conservative or liberal with Prednisone rxing. So, in the end it's you who must decide if prednisone is likely to help or harm you the way you take it. (Note, there are differences in prednisone vs prednesolone (somewhat related,vs pregnenolone mentioned in this thread. You might want to look them up in webmd.com or drugs.com, or similar, with regards to hormones and steroidal affects. Each has a more specific targeted effect.)

 

[stridor]

@TedBakerBoy
Just a head's up. I had what I assume was a low grade encephalitis and it turned out to be related to a mycoplasma infection. Thoroughly investigate Stealth Infections, if you have not done so already.

 

[stridor]

@slysaint
Again, it depends on whether one augmenting to maintain normal cortisol levels or if someone is taking "therapeutic" doses to treat a variety of disease processes. Would you not agree?

 

[TedBakerBoy]

Hi all, I've already posted a thread regarding my prednisone trial and dosage. This is a short update. I've been taking 5mg of Pred Mond Wed Frid for the last month and boy has it been great. All my brain fog has vanished, ear pressure gone, eye floaters gone, spaced out feeling gone and so on. Is this considered a safe long term therapeutic management dose? I would hate to go back to feeling like crap again.?

 

[erin]

Glad you're feeling better though can you not try twice a week and see what happens? Some say long term steroids can be problematic. I don't have any experience on long term use. I was just given a prednisone injection few years ago and it was a huge dose. I felt like I was born again, brand new. Unfortunately the effect lasted 3 months.

 

[TedBakerBoy]

Glad you're feeling better though can you not try twice a week and see what happens? Some say long term steroids can be problematic. I don't have any experience on long term use. I was just given a prednisone injection few years ago and it was a huge dose. I felt like I was born again, brand new. Unfortunately the effect lasted 3 months.

I could try it, I'm really shocked with the results so far though! I think people mistake the therapeutic dose with people who take 50mg per day etc then the real side effects kick in.

 

[FMMM1]

How does prednisone work/what is it targeted at treating?

 

[charles shepherd]

Basic MEA notes on steroids and ME/CFS:

Points to note regarding the use of steroid drugs and ME/CFS:

1 Steroids are drugs that have what is called an immunosuppressive action - so they are sometimes used to dampen down inflammatory responses in conditions like asthma, arthritis, inflammatory bowel disease/crohn's disease - where they can be a very effective form of treatment

2 Research into immune system dysfunction in ME/CFS indicates that this may involve an on-going inflammatory response by the immune system, including the production of immune system chemicals called cytokines, to a triggering infection.

3 There is also a problem with the hormonal axis (hypothalamic-pituitary-adrenal axis) that controls the release of cortisol from the adrenal glands and this may be lowered in ME/CFS = hypocortisolaemia

4 So there are two theoretical reasons why the use of steroids might actually be beneficial in treating ME/CFS
However, no proper clinical trials have ever been carried out involving higher dose steroids and anecdotal reports (including a small two month trial in Glasgow some years ago) suggest that steroids such as predisolone are not of any overall benefit in ME/CFS

5 There have been some trials using much lower doses of steroids (=hydrocortisone) but the results here suggest that the potential longer term problems outweigh any possible short term benefits. These trials are summarised and referenced in the Treatment section of the MEA purple book:

MEA purple booklet: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

6 Steroids, especially at higher doses, can have a number of side effects - short term and longer term
Some of these are similar to symptoms found in ME/CFS. So people with ME/CFS who are using steroids for another medical condition may find that some of their ME/CFS symptoms are made worse

7 Steroid side-effects can include:

muscle weakness
increased risk of infections
insomnia
nausea
headaches
malaise
vertigo

Long term use can cause muscle wasting, diabetes and osteoporosis

8 Side effects are minimised by using the lowest possible dose for the shortest possible period

9 Steroids are also sometimes given by injection for joint, muscular and soft tissue problems/injuries - this would not normally involve a high dose over a prolonged period of time and feedback from people with ME/CFS who have had this type of treatment does not indicate that it causes any significant problems in relation to ME/CFS.

10 In our current state of knowledge, and taking into account all of the above information covering pros and cons, most doctors, myself included, take the view that steroids should not be used to treat ME/CFS

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[TedBakerBoy]

Basic MEA notes on steroids and ME/CFS:

Points to note regarding the use of steroid drugs and ME/CFS:

1 Steroids are drugs that have what is called an immunosuppressive action - so they are sometimes used to dampen down inflammatory responses in conditions like asthma, arthritis, inflammatory bowel disease/crohn's disease - where they can be a very effective form of treatment

2 Research into immune system dysfunction in ME/CFS indicates that this may involve an on-going inflammatory response by the immune system, including the production of immune system chemicals called cytokines, to a triggering infection.

3 There is also a problem with the hormonal axis (hypothalamic-pituitary-adrenal axis) that controls the release of cortisol from the adrenal glands and this may be lowered in ME/CFS = hypocortisolaemia

4 So there are two theoretical reasons why the use of steroids might actually be beneficial in treating ME/CFS
However, no proper clinical trials have ever been carried out involving higher dose steroids and anecdotal reports (including a small two month trial in Glasgow some years ago) suggest that steroids such as predisolone are not of any overall benefit in ME/CFS

5 There have been some trials using much lower doses of steroids (=hydrocortisone) but the results here suggest that the potential longer term problems outweigh any possible short term benefits. These trials are summarised and referenced in the Treatment section of the MEA purple book:

MEA purple booklet: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

6 Steroids, especially at higher doses, can have a number of side effects - short term and longer term
Some of these are similar to symptoms found in ME/CFS. So people with ME/CFS who are using steroids for another medical condition may find that some of their ME/CFS symptoms are made worse

7 Steroid side-effects can include:

muscle weakness
increased risk of infections
insomnia
nausea
headaches
malaise
vertigo

Long term use can cause muscle wasting, diabetes and osteoporosis

8 Side effects are minimised by using the lowest possible dose for the shortest possible period

9 Steroids are also sometimes given by injection for joint, muscular and soft tissue problems/injuries - this would not normally involve a high dose over a prolonged period of time and feedback from people with ME/CFS who have had this type of treatment does not indicate that it causes any significant problems in relation to ME/CFS.

10 In our current state of knowledge, and taking into account all of the above information covering pros and cons, most doctors, myself included, take the view that steroids should not be used to treat ME/CFS

Dr Charles Shepherd
Hon Medical Adviser, MEA

I'm from glasgow myself can you send me the trial link very interesting thanks

 

[Techs]

In our current state of knowledge, and taking into account all of the above information covering pros and cons, most doctors, myself included, take the view that steroids should not be used to treat ME/CFS

I do wonder about the OP's question regarding his specific low-dose, non-daily trial. It seems most of our conventional wisdom about steroids for ME/CFS/FM is based on larger daily doses.

I've been using fairly conventional doses (with ramp-ups and ramp-downs) for, say, two-week periods when I have certain types of flare-ups (two or three times per year). My overall reaction (off-kilter and speedy) as well as a depressive phase while weaning has caused me to avoid routine usage.

 

[erin]

I now remember given lower dose steroid tablets and the cream some 10 years ago for my terrible eczema on my shins . I took the for few days (can't remember the dose) I was so unwell afterwards. There was a bird flu epidemic then I got that immediately. I stopped using it. Those were the earlier days of my ME being so differently.

Now I don't at all get any infections and steroids makes me feel so well. Can anybody comment on this?

 

[TedBakerBoy]

I do wonder about the OP's question regarding his specific low-dose, non-daily trial. It seems most of our conventional wisdom about steroids for ME/CFS/FM is based on larger daily doses.

I've been using fairly conventional doses (with ramp-ups and ramp-downs) for, say, two-week periods when I have certain types of flare-ups (two or three times per year). My overall reaction (off-kilter and speedy) as well as a depressive phase while weaning has caused me to avoid routine usage.

Off kilter and speedy??? Isn't that better than feeling like crap??

 

[TedBakerBoy]

I now remember given lower dose steroid tablets and the cream some 10 years ago for my terrible eczema on my shins . I took the for few days (can't remember the dose) I was so unwell afterwards. There was a bird flu epidemic then I got that immediately. I stopped using it. Those were the earlier days of my ME being so differently.

Now I don't at all get any infections and steroids makes me feel so well. Can anybody comment on this?

I wish we knew Erin i know nothing scientific, if anyone could comment it would be very helpful

 

[TedBakerBoy]

This is not a therapeutic dose that you are taking.
5mg of Pred equates to 20mg of Hydrocortisone.
As I mentioned on your other thread someone with Addisons (suggest you read up on this as well as Cushings) takes 5mg of Hydrocortisone a day (to stay alive). So you are taking 4x that amount in one hit.
I know you will say you're only taking it 3 times a week; You should read up on the half-life of Prednisone to understand.

What would you consider a Theraputic Dose??? I questioned my Dr on this and she told me taking low dose prednisone is no worse than having 4 pints of beer on a weekend or 2 vodkas.

 

[ljimbo423]

What would you consider a Theraputic Dose???

From the reading I've done, it looks like the lowest theraputic dose for prednisone is 5mg a day or 35mg a week.

Glucocorticoid-Responsive Conditions
5-60 mg/day PO in single daily dose or divided q6-12hr

Dosing considerations

• When converting from immediate-release to delayed-release formulation, note that delayed-release formulation takes about 4 hours to release active substances
• Note that exogenous steroids suppress adrenal cortex activity least during maximal natural adrenal cortex activity (between 4:00 and 8:00 AM)

http://reference.medscape.com/drug/prednisone-intensol-342747

 

[JamBob]

This is not a therapeutic dose that you are taking.
5mg of Pred equates to 20mg of Hydrocortisone.
As I mentioned on your other thread someone with Addisons (suggest you read up on this as well as Cushings) takes 5mg of Hydrocortisone a day (to stay alive). So you are taking 4x that amount in one hit.
...

People with Addison's disease don't take 5mg of Hydrocortisone a day - they'd die if they only took that much each day.

A typical replacement dose for someone with Addison's is 15-20mg of Hydrocortisone. This is less than 5mg of Prednisone.

 

[slysaint]

People with Addison's disease don't take 5mg of Hydrocortisone a day - they'd die if they only took that much each day.

A typical replacement dose for someone with Addison's is 15-20mg of Hydrocortisone. This is less than 5mg of Prednisone.

My apologies (friend of mine has Addisons), 5mg 3X a day. And yes the pred is still higher in terms of strength (which was my point).

 

[mission impossible]

I wouldn't reccomend taking steroids long term to help manage ME symptoms based on my experience.
I did start taking them 10 years ago about 35-40mg approx hydrocortisone/day. My ME was really bad(I am severe) and I did an ASI test and it showed practically non existent cortisol levels so I started taking cortisol.

It helped hugely, but only at a relatively high dose.(higher than what you would normally produce daily). At a lower more typical replacement dose I am probably better off than I would be but my ME has gradually gotten worse over time so now I am more ill than I was when I started the cortisol, but maybe I would be worse or dead without any cortisol at all? as I am told by endocrinologist that i have Addison's after several Long Synatchen tests producing zero cortisol, but I cannot be sure it isn't due to adrenal suppression either, we may neve know as my first Synacthen test was done about a year and a half after I started the steroid, produced the least cortisol the endo had ever seen.

I also now have osteoporosis, first measured about 4 uears after i started cortisol so it didn't take very long at all to develop osteoporosis and some pretty bad vision problems another side effect of long term steroid use.

Although taking high steroids for ME seems to really help(i have taken very high prednisone in past ie 10mg and I did feel almost "normal" during those few months but put on alot of weight) BUT you just cannot take this amount long term even though it can work, you won't last long... And if you take a replacement dosage of say just 20mg hyrdro, or 5mg prednisone eventually your adrenal glands will adjust to compensate and stop producing any so you will be no better off than when you started(as Jo Edwards exlains) and then you will have adrenal suppression to deal with and be worse off than when you started so these 2 options don't work at all.

Then there are other problems you may get from long term steroid use even for someone with Addison's taking a replacement dose, just because it is replacement dose it it still not entirely the same as what you body produces and does have side effects. Steroid replacement therapy is a complete pain in the arse and is never as good as what you body can do by produing steroid as needed.

The only way I can see that taking cortisol can be helpful in ME/CFS is 1st take an ASI test and see where you are producing lower than normal cortisol (this will likely in ME be am) and then you could add in 5mg of hydrocortisone or cortisone acetate at that time and that will give you some benefit without altering the amoount of cortisol you are already producing.

Some ME doctors have suggested 5-10mg dose am but 10 is enough to cause suppression as a full daily replacement dose for me to take is: 10mg am then 5mg then 5mg throuhout the day and tiny amount at night or I can't sleep. So taking 10mg am would be enough to cause suppression long term I would think, but 5mg hydro !not 5mg predisone!) may well help without causing harm? First step would be to do an ASI , and see where you are at.

All IMHO.

 

[Mesurfer]

I don't have the concentration to read this entire thread but I can tell you 10 ish yrs into having CFS I tried low amounts of Cortef(steroids) anywhere from 5 to 20mg per day at various times in various doses. The beginning was weird I would sleep all the time but then I started feeling better. I was so happy I would tear up a couple times bc I thought my life of hell was over. But eventually it stoped working for me, I tried everything to make it work again messing around with dosages and scheduling but alas the magic was gone. It was just a temporary semi remission...This was just my experience... good luck...