Feel better on Prednisone?

[WillowJ]

if you don't feel at all better on Cipro, they should really do, oh rats I forgot the jargon, um, antibiotic susceptibility testing, there we have it. What they do is take a culture of your particular infection, stick it in a microarray (basically a sort of tray with a lot of little wells) and see what antibiotics are likely to be effective against that particular strain.

It takes a few days to culture the microbe, and most patients don't like to wait on results before starting treatment, and sometimes doctors don't like to be bothered. However this provides more info about what antibiotics are more or less likely to work in a particular case. Not sure everyone could get away with insisting on it like my microbiology professor, but it could be worth trying. :Retro smile:

 

[Nielk]

Thanks Willow for your advice. They did take a swab and cultured it. They said I definitely need antibiotics but in 2 days, they'll get the results of the culture and then they'll know if this particular antibiotic )Cipro) will work against it or they might change it to another one. When they called me back yesterday to say it's a staph infection, they said that Cipro should work to fight it off.
Thanks everyone for your advice here. (and everywhere)
I'm flying back to NY today and am not looking forward to flying while WSI. (with sinus infection) The doctor told me to buy Afrin spray and use it before the flight. I hope I don't get home in a worse shape than I'm in now. I'm flying alone but, it's only a 3 hour flight.

 

[helios]

Hi NielK, I had a similar experience when treated for a sinus infection. I also go to Dr Ash who is right down the street from Dr. Enlander, he is on WOR on Sunday afternoons, from what he says, prednisone and all steroids beat up the adrenals, which take a long time to recover. He is big on testing for CRP, Homocystiene, Fibrinogen and other inflammatory markers. He does a blood test to determine allergies, which he claims is the source of elevated levels of these things. Quercetin lowered some levels for me.

I just did a quick search on Enlander and Inflammation and nothing really specific came up. John do you see him and if so what is his specific treatments for inflammation? A number of my markers were up when I had them tested a few years back now, certain treatments were proposed, but the doctor kept putting them on the back burner and just went with B12 and instead focused on treating the infection. My worst symptom at the moment is brain fog, but at times it really feels actually like brain inflammation.
Low dose prednisone is something I have been interested in for a while now, after hearing some positive cases, and there are a few here. the other aspect that appealed to me is the appetite aspect, which I'd love something to boost. I did mention it to my prior doc and he dismissed it because of the long term issues, but I dont know if these really apply when someone takes < 5mg and also if the person actually lives a more active live because of it, is that possibly worse than an inactive depressed life with cfs..
I have tried both androgenic and anabolic steriods and felt the best on the later.

 

[Ocean]

Prednisolone was a wonder drug for me... briefly

A couple of months back I went on a 12-day course of Prednisolone to deal with a back problem. The dosage started at 30mg per day for the first three days, and was reduced in steps until I was on 5mg per day for the final three days. From around day-2 until day-5, my overall health was dramatically improved, but as the dosage dropped these benefits rapidly diminished. On the lower doses there was no obvious benefit for my overall health.

My doctor explained that a prolonged course on the higher dosage would be untenable, due to expected side-effects.

People have diverse mood reactions to Prednisolone, with some experiencing euphoria. In my case, my mood was only marginally altered, and so I concluded that the benefits I experienced couldn't be attributed to mood elevation.

That golden window of improved health was like an "Awakening" moment (for those of you who've seen the Robin Williams film by that name). I didn't return to full normal health, but the change was startling, as if I'd been lifted out of a hole. Benefits included better sleep, cognitive functioning, exercise tolerance and energy levels, and diminished sore throat...

Most startling was regaining my ability to function. I suddenly felt like doing things - so many everyday household tasks suddenly seemed easy and natural things to do, whereas normally they seem difficult and onerous. It certainly helped being able to think clearly. I started to catch up on all manner of things (eg dealing with mail from several months back, that hadn't previously been opened - non-urgent mail often gets tossed aside).

Persimmon, once you went off the steroids, did any of the good effects remain? Did it lift you out of a slump and keep you there or did you just return to exactly how you felt before?

 

[WillowJ]

I'm flying back to NY today and am not looking forward to flying while WSI. (with sinus infection) The doctor told me to buy Afrin spray and use it before the flight. I hope I don't get home in a worse shape than I'm in now. I'm flying alone but, it's only a 3 hour flight.

i hope your flight was ok

 

[Nielk]

i hope your flight was ok

Thanks. My flight was ok. I'm back in NY. I had an appointment with Dr. Enlander yesterday. He thinks my immune system must be really beaten down since I keep catching these staph infections in my sinuses. They took a ton of blood for testing. He wants me to go to an Endocrinologist to check my Adrenals and to an ENT to check my sinuses. The Adrenals he wants checked because I told him that I was on Prednisone for 15 years when I had Crohn's. I told him that I want to go back on it, since it seemed to help
all my symptoms when I went back on it for 8 days for my sinuses. He doesn't think it's a good idea and thinks that maybe my adrenals are damaged to begin with from being on steroids for so long. Hence, he is sending me to an Endocrinologist.

 

[YvieArtist]

Persimmon, I too would like to know how you felt coming off the Prednisone. I had the some wonderful affect and will soon be off it. I had some life back for two weeks. It has been wonderful, and I'm really down that it may come to an abrupt end.....

 

[Persimmon]

Persimmon, once you went off the steroids, did any of the good effects remain? Did it lift you out of a slump and keep you there or did you just return to exactly how you felt before?

Persimmon, I too would like to know how you felt coming off the Prednisone. I had the some wonderful affect and will soon be off it. I had some life back for two weeks. It has been wonderful, and I'm really down that it may come to an abrupt end.....

The benefits resolved as the dosage dropped. This process didn't take long. There wasn't any drama - everything gradually returned to normal (ie to how I'd felt before starting prednisolone).

Ocean, sorry I missed seeing your post earlier.
Yvie, glad to read you'd had such a boost - hopes it endures much longer than mine did.

 

[YvieArtist]

I started to come down on the Prednisone, but heavy depression occurred so I went back on a low dose. I am trying again to get off due to negative affects, but it seems like my body really wants this stuff.....read some articles on Dr. Jeffreys book on safe use of low dose cortisol and Dr. Holtorf's Medical Group and site. My local doctor is uncomfortable treating his patients with even low doses of steroids. Oh well.

 

[taniaaust1]

I started to come down on the Prednisone, but heavy depression occurred so I went back on a low dose. I am trying again to get off due to negative affects, but it seems like my body really wants this stuff.....read some articles on Dr. Jeffreys book on safe use of low dose cortisol and Dr. Holtorf's Medical Group and site. My local doctor is uncomfortable treating his patients with even low doses of steroids. Oh well.

I can understand your doctors concern. A study has shown that even low dose cortisol has a risk in CFS people of negatively affecting the adrenals.

I have had my 24 hr cortisol results come back abnormally low a couple of times so I did try low dose hydrocortisone. Unfortunately I had no benefits from it (or maybe with my results, I needed to trial it at more then 10-15mg per day?)

 

[YvieArtist]

Well I was totally amazed at the wonderful relief I received from ALL my symptoms and with some euphoria thrown in (especially nice!) After having the CFS/FM for so many years, no doctor had ever (well I quit going in the beginning as it was "all in my head".) prescribed it. So I am thinking that my adrenals are sluggish at least! I am still slowly coming off the Prednisone but will be looking into seeing an endocrinologist.

 

[taniaaust1]

Persimmon, I too would like to know how you felt coming off the Prednisone. I had the some wonderful affect and will soon be off it. I had some life back for two weeks. It has been wonderful, and I'm really down that it may come to an abrupt end.....

Im booked in to see a doctor who specialises in hormones too (I did see one endocrinologist in the past but he wasnt very good at all). Unfortunately with my appointment, there was a 5mth wait.. so I have to wait till then.

 

[YvieArtist]

Ugh! Sorry.....I really thinking that the low cortisol levels we have plus any underlying virus infection and mitochondria damage is at the bottom of our conditions. Hang in there.

 

[YvieArtist]

There is hope around the corner...

 

[ramakentesh]

Clearly steroids like this are used to supress flares in autoimmune diseases, hence the benefit in CFS might support the mounting evidence that these illnesses are autoimmune in basis

 

[xks201]

I have not read through every post here but I will just state that prednisone is one form of therapy for adrenal hormone replacement. If you are low on cortisol this could be the reason it is helping. And of course it is anti inflammatory, which may decrease some cytokines. But I never noticed it improved my fatigue any better than hydrocortisone (I'm on full adrenal replacement).

 

[heapsreal]

Bumping this thread but also its mentioned how cortisol steriods reduce immunity. I will try and find it but i read the other day where low doses can actually improve the immune system, plus the lowering of inflammtion can help certain treatments like abx/av get at infections better now that inflammation is reduced. i think many of us have low borderline cortisol levels so bumping them up to a more normal level u would think help everything function better even the immune system. Obviously big doses are going to reduce immunity but then we arent really talking about that i suppose.

cheers!!

 

[xchocoholic]

I just got off a 4 day moderate steroid treatment, oraphed. I have chronic angioedema but my doc prescribed it
Because I keep getting anaphylaxis.

Anaphylaxis is hard to predict and I didn't intentionally test my known trigger, vinegar, to see if it worked.
It didn't help my angioedema. It did stop my bladder emptying problem tho.

I felt horrible on it. It made me feel as exhausted as I did when I had h pylori and parasites last year.
My oi didn't get as bad tho. I got depressed on it too. I'm still feeling run down from it. I didn't get candida overgrowth again tho. Yay .

I don't know for sure if this treatment made me too exhausted to prepare the healthy foods I was eating but I resorted to eating anything I could find at times. I have hypoglycemia and need food asap
regularly.

Is the reason some of us feel bad is that it allows some pathogens to multiply ? Or is it too much on weakened
adrenals ? Or is a negative reaction somehow connected to those who get depressed on it ?

Btw. Mast cells are related to inflammation. My brain just went dead but it has to do with prostaglandins. I'm taking mc meds and nsaids now for inflamation. I feel better but I think it's going
to take awhile to undo the chronic inflamation damage I had going on from angioedema. My tissues
where always stressed from swelling.

Fyi .. I'm one of those who gets internal swelling so I didn't realize my pelvic and bladder pain were from swelling.


Tx .. X

 

[adreno]

Elevated cortisol levels is normal in Major Depression Disorder. So the two are definitely connected. Maybe it's the negative impact of glucocorticoids on plasticity and neurogenesis, I don't know. Antidepressant usually work to dampen cortisol levels if they are too high, and also increase neurogenesis.

 

[PNR2008]

I had a bad reaction to bactrim (tongue and gums swelling and itching, sinus swelling over eyebrows, and a huge hive on both face cheeks) and was put on intervenus steroids and anti-inflam at the ER. The bactrim allergic reaction was solved but the 7day medro I was sent home with caused my arm and leg pain to explode and even vicodin barely touched it. This also happened with pred when I had a firey spine. Steroids made it worse or did nothing at all. Even with yellow jacket stings after the allergic reaction is solved, I go off steriods because they make me sick. I have hashimoto's, OI and migraines.