Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Prednisone makes me feel good

Discussion in 'Immunological' started by starlily88, Apr 20, 2018.

  1. starlily88

    starlily88 Senior Member

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    Due to getting quite ill - put on prednisone for 12 days.
    I started to feel differently on the 4th day.
    I could deal with one dr who I have avoided for over 3 years. When he did his thing I did not get
    angry, just shook his hand.

    I have much less brain fog. I can concentrate better, can read books a bit.
    My daily anxiety is gone. That is the best thing of all.
    I have positive outlook on life. My outlook was doom everyday - no joy.

    I am not experiencing mania - just the opposite. My mood is not up or down.
    My mood feels just in the middle.

    I am still fighting this thing he put me on steroid for.
    I went to Shephard Pratt (Hopkins) to see shrink - he said I am not depressed, or mood disorder.

    First time I feel "normal"since my disease turned worse.
    I am positive about life, and doing things I used to do, like putting on music, dancing.

    In last 2 days I have enjoyed talking to people In Trader Joe's after seeing the doctor.
    I can read people better - I feel confident like I used to feel.

    In the last few years, I noticed I got so irritable, very quick to anger, like I suddenly was different person.
    I used to make people laugh, loved engaging with people, and smiled.
    To experience such anger, irritibility, and anxiety is just awful - I had never been like that before.

    I want to test my thyroid, adrenals, cortisol, pitutiary gland function.
    Blood test show I have anemia again, and need iron infusion, so this makes me so much more fatigued.

    I researched Prednisone.
    It has been used in treatment resistant depression with fatigue.
    Found CFS HealthWellnes forum where so many CFS patients have had same great result as me.

    I do realize that the prednisone has lowered my inflammation.
    But for me the mental affect is what I feel.
    I do realize it suppresses my overactive immune system.
    I am getting a break from my immune system attacking all my organs.

    I know how Prednisone ruins one's body - that is not the answer.
    Has anyone found anything to replace the "Prednisone" affect that I have gotten?

    I never knew I could feel normal in my lifetime, and smile, and make plans.

    I am dreading stopping this. Knowing that I can feel normal is awesome. It's not my before CFS person
    but it is not this dreaded angry irritated can't even cook, can't do bills, can't move person.

    I can't go back to feeling the way I have in the last few years - and no meds have even remotely helped me.

    I don't think there is anything close to this prednisone affect. I realize this affect is only for short time.

    Some people get manic, and can do a lot .
    I don't feel like that. I just have a bit of motivation.
    I didn't clean my whole place but could throw things away, clean kitchen. I could make chicken soup.

    I could do these things the first 10 years I was sick - I could meet with friends from time to time.
    Those days are way over. I feel like my brain is messed up physiologically with all my lesions, trigeminal neuralgia, thoracic nerve disease, etc.

    I urinate 25 times day - with Prednisone that stopped.
    I could not go without Linzess - now I don't need it, just use a bit of something else.

    I don't feel like Superman - I just was so below the normal line that this has brought me a bit upwards.
    This is a huge deal to me. I want to live like this.
    I still have my CFS, I am not a new person - but any brain defects have been improved a lot.
     
    Pink, pamojja, bertiedog and 6 others like this.
  2. jpcv

    jpcv Senior Member

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    What´s the dose that you´re taking?
     
    starlily88 likes this.
  3. TenuousGrip

    TenuousGrip Senior Member

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    It makes me wonder what Florinef might do for you.

    It may be worth you looking into it a bit (both on PR and on the Internet, generally) and deciding if it's worth discussing with your doctors.

    Meanwhile ... enjoy the ride :)
     
    starlily88 likes this.
  4. starlily88

    starlily88 Senior Member

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    I started Friday April 13th - 4 tabs/4 days - 10 mg tablets - so 40 mg for 4 days.
    Then 3 tabs/3 days, 30 mg
    then 2 tabs/2 days 20 mg then 1 tab/3 days or 10 mg for 3 days.

    After taking 40 mg the first 4 days - I felt so different. I have done 7 days - so have 5 more days to go, until
    i loose feeling no brain fog, concentration, not freezing 24/7, not irritable, etc. It was nice.
    Thanks starlily88
     
  5. starlily88

    starlily88 Senior Member

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    Thanks so much TenuousGrip. I was told by CFS doc that I had hypothalamus/pituitary problems, he thought.
    I started craving salty foods last 8 months.. I can't digest any proteins or fat.

    Florinef seems to be for Addison's disease, and Hydrocortisone used for secondary adrenal insufficiency I think.

    I have August follow up with my long time Endocrinologist, will ask for the ACTH testing, etc.
    Thanks so much for your input - this would be wonderful if I needed these (LOL) - meaning if it corrects my adrenal glands, or ACTH hormone, or pituitary gland or my hypothalamus.
    Thanks for your help in this starlily88
     
  6. Isaiah 58:11

    Isaiah 58:11 Senior Member

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    A Sun-Scorched Land
    Prednisone was awesome for me too. I was prescribed 40mg with a move to 20mg. I am currently taking Dexamethasone at a dose equivalent to 27mg Prednisone and it helps other things but doesn't seem to have quite the same effect?
     
    starlily88 likes this.
  7. starlily88

    starlily88 Senior Member

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    Isaiah thanks for your response. I know - I am so happy on Prednisone like I have my former self back.
    Curious abuot Dexamethasone - I think this is like hydrocortisone.
    So it stops inflammation? I don't think I could take this due to osteoporosis, inflammatory bowel disease or IBS, and high blood pressure.

    what kind of doctor gave this to you? And are you treating arthritis, allergic reaction, lupus?
    Don't you have to titrate on this just like prednisone?
    And lastly - what is the exact dose equivalent to 27 mg Prednisone, just in case my dr lets me take it.

    What things has it helped you with? Is it good for brain fog, or concentration, or feeling positive?
    Very interested in this, thanks a lot Starlily
    PS sorry for the multiple questions - but I am just dreading stopping this Prednisone so want to be able to present something to a doctor!!
     
  8. 5150

    5150 Senior Member

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    Good! so happy to hear smiles. just don't over-do the Prednisone: better not enough than too much.

    for your reading & learning materials:
    https://healthguides.healthgrades.com/controlling-severe-asthma

    best to you / 5150
     
    Last edited: Apr 20, 2018
    starlily88 likes this.
  9. Wishful

    Wishful Senior Member

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    Prednisone worked awesomely well for me too...the first two times. Then it stopped working. I tried it two or three times after those first two times, once with double the prescription, and it had absolutely no noticeable effect. Very disappointing. Maybe it will work longer for you, but don't be overly shocked if it stops working for you too.

    I wasn't overly disappointed when my doctor wouldn't give me another prescription following the first two, because I found something that worked just as well, and was cheaper and didn't require a prescription. I noticed that curry prevented the usual morning symptoms, and did some experimenting. Cumin (Cuminum cyminum) was the active ingredient, and cuminaldehyde was the most likely compound in it. It reduced my ME symptoms as well as the prednisone had. Unfortunately, after taking it daily for a couple of weeks, I realized that it had gradually stopped working. It was only recently that I discovered that while it didn't reduce my baseline ME symptoms, it was effective at blocking my physically-induced PEM.

    If you find that prednisone stops working for you, please report that here. The researchers might benefit from knowing whether this 'works only a few times' effect is common. I've had the same effect with a few other treatments. The ME seems to adapt to the treatments. :(
     
    Mel9 and starlily88 like this.
  10. Runner5

    Runner5 Senior Member

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    PNW
    That is how I feel when I take L-Tyrosine
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Prednisone can help you retain fluid. Good idea to get adrenal hormones tested. Look into ADH levels but this needs to be used in context with a 24hr urine test to measure volume and osmolarity. 1.5 litres peeing a day is a normal person. When u start going above that its possible you could have a diabetes insipidus type condition ie reduced ability to control fluid and electrolyte balance. You could be dehydrated which causes fatigue itself and if have low sodium etc thats another abnormality that causes fatigue. So the treatment is desmopressin which replaces the ADH/anti diuretic hormone which is lacking or not working and use salt and electrolytes. I found treatment even improved my sleep as i was waking all the time to go to the toilet.

    If other adrenal hormones are low, look into dhea and pregnenolone . Pregnenolone can increase cortisol and some other hormones.
     
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  12. Isaiah 58:11

    Isaiah 58:11 Senior Member

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    A Sun-Scorched Land
    No problem. :) I hope something sticks out as similar and potentially helpful.
     
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  13. starlily88

    starlily88 Senior Member

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    Thanks 5150 - I was only given enough Prednisone for 12 days on regimented schedule from 40 mg to 10 mg.
    Told in ER fall 2017 that I do have asthma - so hearing all 4 drs now saying this is not asthma was curious.
    Cheers.
     
  14. starlily88

    starlily88 Senior Member

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    Thanks for your post Wishful. This is my First time on Prednisone for short term treatment of throat, swallowing, painful/swollen thyroid (we think), trouble breathing after one month with constant high fever.

    Most people on here have not experienced this "remission" phenomenon past the first round of Prednisone.
    Some on here use high dose for 2 days for a trip, golf, etc - and buy it online.
    Thanks for info on taking Curry for same effects.
    Others told me same thing you said - this stops working after few weeks, except for the PEM. SO disappointing!

    I am on my 9th day of 12 days - so tapering off it, still feel happy, concentrated, ability to do tasks, etc.
    Was told by everyone that the effects will leave shortly after I complete this - probably after one day.

    This is quite upsetting - so I am going to do an ACTH testing to see how my Hypothalamus and Pituitary gland, and cortisol are working, along with my Adrenal glands. There are 2 drugs to treat Addison's or adrenal insufficiency - man made steroids - but again - don't think this would be anywhere near effects of Prednisone, which is 4 times
    stronger than these.

    Just knowing that we could have some quality of life - and to feel joy for first time in years - is almost too much for me to bear. I don't know how I can handle going back to what I have been -with no cognition, concentration, motivation, positivity, feeling "normal", and being able to perform simple household tasks.
    Cheers to you!

    .
     
    Mel9 likes this.
  15. starlily88

    starlily88 Senior Member

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    Thanks for info on L-tyrosine, interesting. Do you take 500 - 1,000 mg/day?
    Does this help your cognition best? The literature says not to take if hypothyroid, which is confusing since it seems to help the thyroid in general.
     
  16. starlily88

    starlily88 Senior Member

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    Thanks for this great information! I know Prednisone makes one retain salt, thus retain fluid, but paradoxically it has done the opposite for me, nor has it increase my appetite, but lowered it, but I do have Gastroparesis, and IBS, etc.
    I do intend to do the ACTH testing - to see condition of my hypothalamus/pituitary glands, and Coritso levels done by saliva, and cover my adrenal glands too.

    I have been diagnosed with Impaired Glucose Tolerance (IGT) which is pre diabetes 2 - but get my A1C levels done every 3 months. It was just at 5.3% - which a normal person gets.

    Who tested you for the ADH - a urologist? There are lousy ones here where I live, have been to 15 of them, none cared that I peed 25/times/day, and have blood in my urine, nor did any of them get rid of my 3 kidney stones, so I walked around with them for 16 months, getting UTI's. So I won't go back ever to any urologist.

    The prednisone increased by 4/5 times my volume of urine, decreasing the times I went down to 5 or 7 times.
    So it was helping what you are telling me about. I will follow this up with my Endocrinologist.
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I just got ADH tested through my GP and the 24hr urine test as well. My dr was comfortable prescribing desmopressin, it is prescribed to children for bed wetting and old people with frequent urination with no testing etc and is safely used. One side effect from desmopressin is that it can lower sodium ie because urination is less, sodium can become more diluted and cause low sodium which has symptoms of fatigue but easily controlled with salt tablets or electrolyte supps.
     
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  18. erin

    erin Senior Member

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    I had a corticosteroid injection (diprospan 1 Ml) in 2015 and 2017 for hernia on my neck. I felt completely back to my normal self with the first injection, best thing was the eczema I suffered for 8 years gone. I mean completely, almost within few hours. And other symptoms similar to yours were better. It was so nice to experience that, it lasted 3 months. Then all came back, sorry to say.http://forums.phoenixrising.me/inde...yone-have-positive-results.42230/#post-725626

    Unfortunately same injection last year was not as effective, it made a mild positive change and lasted for 3-4 weeks.

    Have you read @WoolPippi 's threads and posts about prednisone? She's very informative.
     
    Last edited: Apr 22, 2018
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  19. Wishful

    Wishful Senior Member

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    Yah, the temporary remission is wild rejoicing...followed by a crash when you discover that it's not permanent. The important lesson is that our symptoms are not permanent degradation, like lost neurons, they are due to something keeping us in this abnormal state. The temporary remission shows us that it is possible to go back to normal. We're just waiting for the researchers to figure out how to do this, or for some ME/CFS victim to discover some food or whatever that does the trick. When I walk in the woods, I sometimes chew on (known to be non-toxic) berries, leaves, etc, just in case they contain the miracle cure. None have worked yet, but I keep hoping...
     
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  20. Isaiah 58:11

    Isaiah 58:11 Senior Member

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    At the moment my brain can't tell me if this matters at all, but I will add that my ADH/vasopressin has always tested as low or totally undetectable and I have had sort of mini crises remedied by salt, but I have also seemed to benefit from overall electrolyte supplementation, sometimes potassium specifically.

    Lately I have had edema, particularly in my thighs, that worsened as the day went on and I have wondered if it is related to the Dexamethasone.

    I gained no weight with Prednisone, but have a bit with Dexamethasone. (And I mean fat, not water). I also seemed to have tanked my thyroid (swollen, scalloped tongue, etc)? But I can't access doctirs or tests right now and am afraid to adjust my dose because my levels do strange things that scare doctors (like normal-low TSH, low T4, and sky high T3).

    I hope this anecdotal cheap helps unravel something for you!
     
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