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Feel better on Prednisone?

Discussion in 'General Treatment' started by Nielk, Jan 15, 2012.

  1. Nielk

    Nielk

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    In the past two months I have had 2 stubborn sinus infections. Each time I was given antibiotics and Prednisone (8 day pack).
    Each time I was on the Prednisone, I felt better not only with my sinuses but with my other symptoms as well. When I went off the pPednisone, I felt lousy. (worse then when I started). This happened both times that I took the Prednisone. Since steroids treat inflammations and I know I have a symptoms of inflammation in my body, wouldn't it make sense to treat my ME/CFS with steroids? My C-reactive protein is high (7). I have very high tithers to many viruses in my blood work. I am positive for mycoplasma.
    Did anyone have a similar experience with Steroids? Is anyone on steroids now and is being helped by it?
  2. Dreambirdie

    Dreambirdie work in progress

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    My experience with hydrocortisone was absolutely horrible. I was prescribed it to help "boost my adrenals" (as per the book by Jeffries). It ended up making me so anxious and over-stimulated that I had to lie in bed for 6 weeks doing deep breathing exercises and popping 6 capsules of holy basil every hour in order to maintain my sanity, and to prevent my heart from going into arrhythmia. After that longggg very hellish ordeal, I crashed for the next 6 months. The HC was the main cause of my big relapse in 2009. I have not recovered yet.

    So my answer to both of your questions is a very loud NO.
  3. SOC

    SOC Moderator and Senior Member

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    Years ago my PCP would give me a medrol dosepak when my sensitivities got unbearable. I always felt hugely better while on them and for several weeks after. I told the PCP, but he said it was "just the euphoria induced by the steroids". :rolleyes:

    Now that I don't have big sensitivity problems, I don't know if it would work these days.
  4. Nielk

    Nielk

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    I did have withdrawal symptoms coming off it.
  5. AndrewB

    AndrewB Senior Member

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    Hi was given Prednisone before i was diagnosed, after my first bout of M/E illness, and it made me really mentally unwell.
    Prednisone is known to effect a certain percent of people in a very negative way, i was 'not thinking right' whilst on it, and
    those symptoms stayed with me some weeks later.
    It did make my M/E feel better for a few hours, but the side effects were awful , i wouldn't encourage anyone to take it unless
    the inflammation was life threatening.
  6. Nielk

    Nielk

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    I was on Prednisone for 15 years prior to Me/CFS. I had Crohn's and prednisone kept it pretty much in check most of the time. I never needed surgery. Without it, I was very ill.
    Maybe, my body reacts well to Prednisone.
  7. john66

    john66 Senior Member

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    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 have had many steroid shots into my neck and lower back for sports injuries, which helped short term, but I think destabilized the area long term. Maybe part of the reason why I am in the shape I'm in. The first steroid series I got, I ate and gained weight like crazy.

    Have you tried a neti pot with saline fr the sinus infection? I hate doing them, but it really helps me with night time sinus inflammation. From what I have read, and I cant remember where at this point, a high percentage of recurrent sinusitis is really a fungal infection, which steroids would be good for.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    try getting all your hormones tested especially cortisol and dhea as well as sex hormones. If cortisol is low or feel better on prednisone, maybe look into pregnenolone transdermal cream but start low like 5-10mg doses. Body makes cortisol from pregnenolone and progesterone. cheers
    AFCFS likes this.
  9. Nielk

    Nielk

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    Thanks for everyone's advice!
    I do use a netti pot and nasal sprays. When my sinus cavities are inflamed though, it is irritated even by just using the netti to rinse them out. I also use a vapor inhalor which is very soothing while I use it but, the benefit is very short term.
    My problem is definitely allergies. I have gone to so many practitioners to treat my allergies but no positive results.

    I will look into Quercetin and pregnenolone cream:)
  10. Nielk

    Nielk

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    I e-mailed my specialist Dr. Enlander. (since I'm in Florida now till the 26th)
    This is what he said:

  11. SOC

    SOC Moderator and Senior Member

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    That's basically what my doc would say all those years ago, Neilk, which was why he only gave me the Medrol when the sensitivities were unbearable, as in I couldn't leave the house without reacting to something. It made sense to me then because it seemed like my immune system was hyper-reacting in those days and knocking it down a bit helped. But, we certainly don't want to shut down our adrenals, so frequent use isn't safe.

    Too bad, really, because I sure felt a lot better on it.
  12. liquid sky

    liquid sky Senior Member

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    If you were on Prednisone for 15 years straight, your adrenals may be really depleted. May be why you respond so well to it.

    I respond well to it also, but do limit usage due to side effects long term. It reduces bone mass and can cause compression fractures in the spine. Then it also cases metabolic syndrome, hastening adult onset diabetes. My rheumatologist claims that if you stay on 5mg. or less daily, you will not have these side effects. Who knows?

    Eventually, I get to thinking about quality of life as to quantity and wonder if 5mg. would be so bad if it makes one fairly functional and with much less pain.

    I hope Dr. Enlander can help you. Best wishes.
  13. alice1

    alice1 Senior Member

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    i've been on 20 mgs of cortef for several months now and it's been very helpful.it's worth reading dr jeffries and low dose cortef regarding the benefits.google dr jeffries and cortef and see what he has to say.
    this was his lifes work.
    best
    a.
  14. liquid sky

    liquid sky Senior Member

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    Even the smallest dose of Cortef makes me shaky and wanting to crawl out of my skin. Prednisone 5mg. helps me a lot with inflammation and pain and gives me energy without all the bad side effects of Cortef. I see that 20mg. of Cortef equals 5mg. of Prednisone, so maybe I will try it out again.
  15. Nielk

    Nielk

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    This is exactly why we are so confused or to rephrase it - why I am so confused.
    We are not all the same and different medications or supplements affect us in different ways.
    Since there is so little good, reliable, tested information out there for us, we try to get information from each other.
    This is very understandable and I do this all the time. This thread is a great example.
    Then, we get conflicting reports from patients who are nice enough to share their experiences to help us but, the information is conflicting.
    Even the big specialist doctors who treat ME/CFS do not agree on a lot of treatments and protocols.
    The dilemma is left up to us to chose, to try out for ourselves different treatments in the quest of something (anything) to alleviate our burden.
    It is obvious to me that at this time, there is no holy grail of a treatment that will work for everyone without harming them. (except maybe rest)

    Thanks to each one of you for sharing your experiences and for your time to give advice.
    That's the power that I see at this forum. There is such an impetus for people to try to help each other. It is really heartwarming.
    We are all suffering in our little world yet, we take the time to help each other. You each deserve a pat on the back!
    taniaaust1 likes this.
  16. Ocean

    Ocean Senior Member

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  17. Nielk

    Nielk

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    Thanks Ocean,
    It sounds very much like my experience, although my initial hit with the illness was much more severe and quick.
  18. Ocean

    Ocean Senior Member

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    I really appreciate that you acknowledge how different we all are. I think sometimes people are so excited about something that helped them they assume it will help everyone else too. But time and time again we see on here and from personal experience how people have vastly different results to treatment as well as different symptoms to begin with. Plus other illnesses some may have in addition to CFS/ME also causes differences too. It does make things much more difficult.
  19. Carola

    Carola

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    Nielk, I was so interested to see this post. Coincidentally, I was on prednisone for all of December because of a severe allergic reaction, starting at 60 mg/day, then decreasing gradually to zero over the course of the month. On 60, 40, and 30 mg. I felt hellish, started to feel more human at 20 mg, felt okay at 5 mg and positively good at 2.5 mg. No CFS symptoms! That lasted for about 4 days after I'd completed the taper, then the malaise, tiredness, muscle weakness and headache returned, and how! I have a bunch of prednisone left and am half-tempted to prescribe myself a low-dose regimen of 2.5 mg. a day and see what happens. The only thing holding me back is concern about long-term suppression of my adrenal function.
  20. Nielk

    Nielk

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    It's a catch 22 situation. I see here that I'm not the only one who feels better ME/CFS symptom-wise on steroids. But, steroids with long term use is supposed to harm us where we are the weakest - immune system and adrenals. So, what to do? I would also be tempted to take a very low constant dose. If it relieves a lot of our pain, is it worthwhile? Then I remember the nightmare I am on because of the Klonopin that I also started 6 years ago on a low dose and it helped me with my sleep and pain. I had to keep upping my dose for it to be effective. Now I am stuck with 3mg a day with no benefit and I can't get off it. I know some have been successful in weaning themselves off but, so far it doesn't look like it will happen to me. I know that Klonopin is one of the most addictive drugs and steroids I'm sure are not as bad but I know someone who had to be hospitalized to get off her steroids. It is such a tough call! Then again, there are people on very strong anti-virals, GcMaf, Ampligen: I'm sure these are not doing wonders for their bodies.
    AFCFS likes this.

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