Steroids resolve symptoms???

TJ_Fitz

Well-Known Member
I was recently on a high-dose taper of prednisone following a procedure to fix my frozen shoulder. This was at least the third time I've been on high dose, short-term steroids.

People typically say that steroids make them irritable and crazy, and give them a bad case of the munchies -- which makes sense because it's essentially the same thing as having high cortisol levels -- but I feel great on them. I've felt great every time, better than I ever feel when not taking them! Then, of course, I'm miserable again when I come off of them, sometimes toward the end of the taper, sometimes after I'm off completely.

What does this mean? Does this suggest that chronic, uncontrolled inflammation is a key part of my problem?
 

jaminhealth

Well-Known Member
I had near frozen shoulders over 10 yrs ago and a quality chiro worker, worked on me and helped a lot.

Later I found Prolotherapy and had injections in the right shoulder and got 3 yrs of no pain. I could use more Prolo but I'm living with what I have and keep moving my shoulders, arms lifts, shrugs and more.

Steroids do more damage than good to what cartlidge is left in the area. Breaks down more bone. Very temporary relief if any at all. I avoid them like the plague.
 

Creekside

Active Member
The first time I tried prednisone, I had full remission from my ME ... until I tapered off. The second trial worked the same, except the remission started on the second day rather than the 5th day. I tried prednisone a couple of times after that, with no noticeable benefits. It was just one of many treatments that worked well for ME for the first couple of doses and then stopped working and never worked again.

FWIW, I believe that ME's severity is affected by cytokine levels, so reducing those may be why steroids help.
 

Creekside

Active Member
For me the prednisone was a desperate experiment. My doctor wasn't willing to prescribe it long-term because of the bad side effects. It was useful as an experiment though. I'm not sure what I would have done if it had continued to work after the first two trials. I don't think reducing cytokine levels is the correct approach for treating ME. I think the fix lies in whatever is malfunctioning in response to normal levels of cytokines.
 

TJ_Fitz

Well-Known Member
For me the prednisone was a desperate experiment. My doctor wasn't willing to prescribe it long-term because of the bad side effects. It was useful as an experiment though. I'm not sure what I would have done if it had continued to work after the first two trials. I don't think reducing cytokine levels is the correct approach for treating ME. I think the fix lies in whatever is malfunctioning in response to normal levels of cytokines.
Neither is my doc, and I'd rather not be on them long-term anyway!
 

jaminhealth

Well-Known Member
Steroids are NOT the answer. Talking to my friend who deals with ME decades is on Phoenix Rising and they try so many "things" over t here....have you been there?

Here is what she basically takes for the decades of ME she lives with:

The things that have helped me the most are:

NP Thyroid

branched chain amino acids - 4000 - 5000 mg a day

vitamin B1 - now taking 300 mg a day. When I first started it, it helped with energy then caused my phosphorous levels to drop (making me very tired) due to refeeding syndrome and I had to start taking a phosphate supplement, so this helps some.

B6 - about 300 mg a day in 2 doses

methylfolate - 2400 mcg a day in divided doses. This caused my potassium to drop when I first started taking it due to refeeding syndrome, so I had to start taking potassium gluconate. I take 1000 mg of potassium gluconate a day - in divided doses - 200 mg with breakfast, 200 with lunch, 200 with dinner, 200 before bed and 200 middle of the night

methylcobalamin - 5000 mcg a day

Cq10 - 200 - 400 mg a day

None of these solve the essential problem of ME/CFS. They just give me a bit more energy but I still crash every time I over do it and end up in bed. I take a bunch of other stuff too but these stick out in my mind. Also d-ribose helped for quite awhile but doesn't do much now.

I'd suggest you suggest to that person that she or he check out Phoenix Rising - they have people trying out all sorts of things. She also added this:

One other thing - the person on HR should know that we're all different. Many people with ME couldn't tolerate all the B vitamins I have to take. But a B complex doesn't do it for me. The only way I know of is to try new things one at a time, starting with a small a dose.


My friend has and does try so much but no Steroids.....
 
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TJ_Fitz

Well-Known Member
Steroids are NOT the answer.
Yes, I agree. But as I said in my OP, I wanted to understand why I felt so much better on them (not get justification for taking them long-term 🙂). Between what I learned from my doctor and this discussion, I do understand now.
 

jaminhealth

Well-Known Member
My friend with the info I posted above has tried SO MUCH and the last good help was the taking Potassium Glucconate thru the day....or if you eat a couple avocados daily. She takes 200 mg 4-5 times daily. I do a little less than her but I take more daily too.
 

BarbaraB

Member
Dont be afraid of steroids. I have been using steroids, very low dose prednisone 5mg every other day for 20 years. Better for you than half the stuff they prescribe. Get your Cortisol level tested. Mine are always normal. Doc said just take extra Vit D. I get steroids from my Pain doctor because I have high inflammatory markers such as SED rate, Ferritin and CRP but I dont fit into any of the common Rheumatological diseases.
 

Not dead yet!

Well-Known Member
I was recently on a high-dose taper of prednisone following a procedure to fix my frozen shoulder. This was at least the third time I've been on high dose, short-term steroids.

People typically say that steroids make them irritable and crazy, and give them a bad case of the munchies -- which makes sense because it's essentially the same thing as having high cortisol levels -- but I feel great on them. I've felt great every time, better than I ever feel when not taking them! Then, of course, I'm miserable again when I come off of them, sometimes toward the end of the taper, sometimes after I'm off completely.

What does this mean? Does this suggest that chronic, uncontrolled inflammation is a key part of my problem?

Yes this is how I am also. Everything clears up perfectly on prednisone. Then goes to h*** when I'm off it. I do think it's constant inflammation related. Super high doses of Vitamin C by IV will stop it for a while for me. Those doses usually also come with glutathione, some magnesium, and potassium though.

Here's something that also works for me: on pain days, I take potassium bicarb, about 2k mcg or 1/4 tsp powder in about 1/4 cup water and the next day I feel way better.

It took years to figure out I was getting liver fibrosis. As usual, they weren't catching it in time. The fibrosis causes a local high blood pressure which locally is reduced by the potassium which stops the tension that radiates into the shoulders and neck. The potassium trick still works. So does the Vitamin C but that's really expensive and honestly, risky. The places that do it, at least near me, are kinda skanky.

The prednisone, by reducing inflammation also reduces the pressure in struggling organs. So same effect.

Well, that was the key for me. Can't say that's the case for you, but a liver fibrosis test is non invasive. It's them basically doing a "ping" echo test to see how your liver responds. From the outside, skin not broken. Ultrasound records the responses. Honestly mindlessly easy. Can't imagine why it's not routinely done.
 

Not dead yet!

Well-Known Member
Another thing to think about with steroids, cortisol type steroids, they can fit into almost any hormone receptor. So if your body is in need of something, even an obscure hormone like LH, it will suddenly feel like your hormones are all nicely balanced. As someone who usually has a wild chaos of hormones from day to day, steroids are extremely nice to me.
 

TJ_Fitz

Well-Known Member
Another thing to think about with steroids, cortisol type steroids, they can fit into almost any hormone receptor. So if your body is in need of something, even an obscure hormone like LH, it will suddenly feel like your hormones are all nicely balanced. As someone who usually has a wild chaos of hormones from day to day, steroids are extremely nice to me.
That's interesting. Where did you find that?
 

Not dead yet!

Well-Known Member
That's interesting. Where did you find that?

It's been years now. I have PCOS and one of the things that happened is, taking prednisone reversed the effects of Lupron. When I asked the doctor why, I pressed and she told me the steroid could fit in many receptors, temporarily calming any deficits, which is why it made me feel better but undoing the effect of a drug that was suppressing some hormones for me. During menopause, I would always immediately have a period when I started a dose pack. I think it made my body think my estrogen levels dropped even if they hadn't. But the amount we don't know about the female body is huge.

The discovery of the Lupron effect was back in the early 2000s, so by now there may be actual science done on either that effect or the effect on periods. I know it affects the thyroid too, but again that was a doctor telling me that, warning me that it could cause problems.
 

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