Prednisone makes me feel good

[starlily88]

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...

Now I know why you picked "wishful" for your name - indeed we all must carry this wishful thinking in order to maintain hope. Interesting what you said. Yes you are absolutely correct!!
This shows us that our symptoms are NOT permanent degradation, so exciting!
We are in limbo in abnormal state - Nos as hopeful as you that any researcher would even fall upon this - and there is no money - but will talk to my Cousin who does do research at Harvard/MIT about this - to see who we could contact.

I think with all our heads put together - so far the suggestions on here have been excellent! Thanks so much.

 

[starlily88]

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.

Erin great the coricosteroid injection lasted 3 months. I assume it was high dose,
I am on my last 3 days - and don't think I can withstand going back to where I was

Thanks for the reference to WoolPippi> Seems she concentrated on Adrenal HRT, - the adrenals, cortisol, Aldosterone. I am going to do ACTH testing.
Thanks for your help starlily

I

 

[erin]

@starlily88 good luck with the ACTH testing. I have cancelled mine last minute, I just couldn't face the hospital. It was in January and there was a severe flu epidemic. I hate going to hospitals in general, especially hate when there's a flu epidemic. This was my 3rd chance, I've postponed first two dates for different reasons. I'm still very curious what would the result be. I hope you get answers to your questions with the test. Can you update us with the results -hope not too much to ask- sorry for being curious.

 

[Runner5]

I take 2 -- 500mg L-Tyrosine daily typically, breakfast and lunch. I don't take it later in the evening as it may cause insomnia. It makes me more easy going, banishes anxiety, helps keep depression at bay and generally makes me, "in love with the world" ;-P -- I'm not sure about mentally sharper, although meditation helps with that a great deal. I try to meditate 1- 3 times per day with the Headspace App and I play card games and thought puzzles to try to get my brain to work a little better.

I read it helps hypothryoidism but *shrug* I don't really know.

 

[Wishful]

@starlily88 One more lesson from the temporary remission: the treatment, when it finally arrives, probably won't be something that takes years to begin to have an effect. From my experiences, the right treatment will probably snap us back to full remission in hours, if not minutes. Whatever the chemical imbalance is, it can alter quickly.

I soooo want that magic pill.

 

[kangaSue]

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.

Just came across an interesting paper to do with this;

Down-regulation of renin-aldosterone and antidiuretic hormone systems in patients with myalgic encephalomyelitis/chronic fatigue syndrome.
CONCLUSIONS:
Both the renin-aldosterone and ADH systems were down-regulated despite the existence of reduction in cardiac preload and output in patients with ME. Desmopressin improved symptoms in half of the patients.
https://www.ncbi.nlm.nih.gov/pubmed/27401397

 

[starlily88]

@starlily88 good luck with the ACTH testing. I have cancelled mine last minute, I just couldn't face the hospital. It was in January and there was a severe flu epidemic. I hate going to hospitals in general, especially hate when there's a flu epidemic. This was my 3rd chance, I've postponed first two dates for different reasons. I'm still very curious what would the result be. I hope you get answers to your questions with the test. Can you update us with the results -hope not too much to ask- sorry for being curious.

Thanks Erin. Don't have to explain to me about being anywhere near a hospital during this 2017-2018 very virulent epidemic flu season My Endocrinologist has long asked me to wear surgical mask whenever I am out. I do this in the fall/winter. Of course waiting in the ER is problem - so they put me in small conference room with door shut so I am not exposed to all the germs.

Of course I will update everyone. I know how you feel about asking - I feel like that too if I want more info, but I think this site is full of incredibly bright empathetic people - all helping each other get one more step out of this disease.
Don't ever have to apologize for being curious - without your input about the ACTH testing, I would never have known that this is not crazy on my part for wanting to do this .

I am going to discuss this with my Hopkins neurologist, then with my Endocrinologist in August.
He sent me script for Full Panel Thyroid Test, which I requested after seeing my TSH was so very low.

Hope you don't mind if I PM you, if I remember how
Starlily

 

[starlily88]

@starlily88 One more lesson from the temporary remission: the treatment, when it finally arrives, probably won't be something that takes years to begin to have an effect. From my experiences, the right treatment will probably snap us back to full remission in hours, if not minutes. Whatever the chemical imbalance is, it can alter quickly.

I soooo want that magic pill.

Dear Wishful - I am now on my 11th day of Prednisone - with one day to go.
Psychologically this is hard for me. I am hoping that the totality of my brain improvements don't disappear.

Dr. Jay Goldstein thought same way you do .He tested every item to see it's effects on the thousands of CFS patients he saw. He saw great effects in hours - but due to ME/CFS patients not having the money/energy/time to stick around out in San Francisco, it was hard to know which would work long term.

I think nitroglycerin is second on his list. There is his list of "meds" he used that worked best for us.
You can see his list on this site - just do a search.

 

[used_to_race]

My rheumatologist put me on a 10-day prednisone taper starting today - 20mg for 5 days, 10mg for 5 days. @starlily88 How long did your remission last? Have you since taken any more prednisone?

My symptoms are all very "immunological" - sore throat, runny nose, lymphadenopathy, mild fatigue, GI problems, headaches, dysautonomia. I am hoping I can at least experience some degree of remission while I am taking the prednisone.

 

[starlily88]

My rheumatologist put me on a 10-day prednisone taper starting today - 20mg for 5 days, 10mg for 5 days. @starlily88 How long did your remission last? Have you since taken any more prednisone?

My symptoms are all very "immunological" - sore throat, runny nose, lymphadenopathy, mild fatigue, GI problems, headaches, dysautonomia. I am hoping I can at least experience some degree of remission while I am taking the prednisone.

My "remission" only lasted as long as I took the prednisone - April 13 to April 24th 2018 - and maybe 4/5 days later.
My Hopkins Endocrinologist let me try it again - but just like everyone on here already told me, it never works the 2nd time around. The Prednisone took care of all my NEUROLOGICAL symptoms (not Immunological). My symptoms are pretty severe. Not comparing yours to mine - just saying that my brain was so swelled up the prednisone brought down some swelling.
Yet one month later my Sedimentation rate was the highest it has ever been - it was >130 which is very high.
So just saying taking prednisone is a very temporary help - my ENDO was merely giving it to me due to me having a rare thyroid disease - and he thought this would help the "pain".
Trust me - all the things we all get - are the same or worse pain that what my thyroid gave me.
I just loved the fact that I was "me" for a few weeks. It was an awesome feeling.

 

[TiredBill]

I am currently at the end of a Prednisone taper (20x4, 10x4, 5x4) due to an upper-left back spasm/pinched nerve that did not respond to anti-inflammatories and muscle relaxants.

I was very reticent to use Prednisone but was in too much pain to say no when other methods failed.

I was astonished by the initial effects of the Prednisone. On day one not only did the pinched nerve relax but the ever-present ME/CFS symptoms (fatigue, pressure behind the eyes, brain fog, and a feeling my system is working against me) lightened considerably. The next two days were even better. I felt normal. ME/CFS feelings pushed so far into the background that I did not feel them.

This almost never happens. I've been sick with this for 34 years. In that time there had been less than a handful where I felt nearly-normal. To have 2.5 days in a row where I felt great was absolutely remarkable.

Unfortunately, on day four, I came down with a cold and the feeling of being "normal" disappeared.

But the few days of feeling free of stress on my body that comes with ME/CFS was amazing. It gives me hopes of recovery.

I have no idea where to take this. My limited understanding is that being on Prednisone long-term is not desirable. But the experience does seem like a "clue" in my case.

I've not yet shared this positive side-effect with my internist or endocrinologist (but fully intend to do so).

I just wanted to share that I'm one more person who at least for a couple of days felt great using while using Prednisone.

Best,

Bill

 

[used_to_race]

Just wanted to update you all on my situation. I started 20mg prednisone on Friday, and was waiting for it to kick in all weekend. By Sunday, I was getting worried that it wasn't going to work. Sunday afternoon I began feeling worse. Symptoms that I had under control began to come back, namely the tachycardia issues I was dealing with in the past. My sore throat also worsened. I called my doctor on Monday and he instructed me to taper down to 10mg for a couple days and call him back. So today is day 3 of 10mg, and we will see how to proceed. I haven't had a fever during this process so I am not too concerned about any kind of infection yet.

Before starting, I guess I was pretty sure this would make me feel better, the only question being for how long after stopping. My doctor told me this wouldn't give us a ton of information, because prednisone is a much more potent anti-inflammatory than immune suppressant. Having a negative response to it probably indicates that I am just very sensitive to this medication. I have a few other medications on my list of things to try, but for now I will be sticking with what has been working (modestly) and work up the courage for another experiment in the future. Hopefully by next week I am feeling better.

 

[Wishful]

I tried prednisone with no preconceptions of whether it would work or not. There were no effects for the first four or five days, and I just accepted that it was another 'doesn't do anything' treatment. The next morning I woke up in full remission of ME. I felt great! Of course, that faded after tapering off. I got a second prescription, and it took effect after only two days...and faded after finishing the course. I tried it several times over the years after that, but it never worked again.

So, a delay in seeing a positive effect is quite reasonable, in my experience. A negative response isn't a total surprise either, since this is ME, and we all react differently to things. I'm sorry you didn't get to feel the miracle of temporary remission from it.

 

[used_to_race]

I tried prednisone with no preconceptions of whether it would work or not. There were no effects for the first four or five days, and I just accepted that it was another 'doesn't do anything' treatment. The next morning I woke up in full remission of ME. I felt great! Of course, that faded after tapering off. I got a second prescription, and it took effect after only two days...and faded after finishing the course. I tried it several times over the years after that, but it never worked again.

So, a delay in seeing a positive effect is quite reasonable, in my experience. A negative response isn't a total surprise either, since this is ME, and we all react differently to things. I'm sorry you didn't get to feel the miracle of temporary remission from it.

Do you remember the dosage? I am probably not interested in trying this again, but maybe my dosage was wrong.

 

[Wishful]

I think it was the 'standard' dosage. I don't remember the mg though. Maybe 20?

 

[knackers323]

Anyone finding cumin or anything else has similar effects to the corticosteroids?

 

[used_to_race]

I tried prednisone with no preconceptions of whether it would work or not. There were no effects for the first four or five days, and I just accepted that it was another 'doesn't do anything' treatment. The next morning I woke up in full remission of ME. I felt great! Of course, that faded after tapering off. I got a second prescription, and it took effect after only two days...and faded after finishing the course. I tried it several times over the years after that, but it never worked again.

I think it was the 'standard' dosage. I don't remember the mg though. Maybe 20?

So luckily I have access to a really smart and knowledgeable doctor who takes ME/CFS seriously. Talked to my rheumatologist. He said to just stop taking the prednisone. His opinion is that my reaction is fairly consistent with the lack of inflammatory markers in my bloodwork, plus a sensitivity to the medication. Interestingly, there are both inflammatory and non-inflammatory autoimmune processes. For example, he thinks dysautonomia is often an "inhibitory" autoimmune process, and we just haven't found a good explanatory set of autoantibodies for the condition. When I mentioned that some people on here have had positive reactions to corticosteroids and others negative, he said that there are likely multiple disease processes being lumped into "ME/CFS" which is something a lot of us already suspect.

Correct me if I'm wrong, but it seems like most of the people who have responded to prednisone on here have alluded to their cognitive symptoms being the most affected. I don't have any such symptoms and perhaps that is an inflammatory process that the prednisone helps with. Would go along with Dr. Younger's findings of brain inflammation that I admittedly know very little about. I wonder if people who respond to prednisone are the same group who respond to LDN. Maybe I should start a poll.

The last thing we discussed was future treatment. I have been responding somewhat well to a combo of Plaquenil and HBOT. Specifically I was mild verging on moderate in terms of severity, but with these interventions I am able to play soccer and work full time with little difficulty. My doc and I had been considering sulfasalazine before this prednisone trial, but he said that, as it is an immune modulator rather than an immune suppressant, it probably wouldn't help any more than the plaquenil. I will have to ask him more about this because I was under the impression that it's a more systemic treatment. He would be more inclined to try an immunosuppressant medication, but we will have to figure out what to go for. I'm a bit scared of shots in the dark after this prednisone affair. Things on the table include methotrexate as well as some injectable biologics such as humira and actemra. I am also really interested in rapamycin, but my doctor knows more about a similar medication called tacrolimus.

After tapering for three days, I am off the prednisone and feeling okay this morning. Hopefully sometime this weekend I am back to baseline.

 

[Wishful]

Anyone finding cumin or anything else has similar effects to the corticosteroids?

I'm guessing that you're asking about people other than me, since I reported that cumin had the same effect on my symptoms that prednisone had, at least for a few weeks after the second prednisone course. Then it stopped having that effect. I only recently discovered that it effectively blocks my PEM. I haven't had anyone else report to me that cumin had a definite effect on them.

 

[Wishful]

Correct me if I'm wrong, but it seems like most of the people who have responded to prednisone on here have alluded to their cognitive symptoms being the most affected. I don't have any such symptoms and perhaps that is an inflammatory process that the prednisone helps with. Would go along with Dr. Younger's findings of brain inflammation that I admittedly know very little about. I wonder if people who respond to prednisone are the same group who respond to LDN. Maybe I should start a poll..

A poll might show something interesting. I do have mainly cognitive symptoms (maybe all are neurological). I did respond to LDN. I strongly believe that ME's core dysfunction is neurological, involving activated microglial cells.

 

[used_to_race]

A poll might show something interesting. I do have mainly cognitive symptoms (maybe all are neurological). I did respond to LDN. I strongly believe that ME's core dysfunction is neurological, involving activated microglial cells.

I think that's probably too simplistic an explanation given the variety of symptoms people experience. Sure, there are those whose symptoms are entirely neurological, who experience brain fog, impaired speech, loss of coordination, and autonomic dysfunction. But I don't have any noticeable neurological symptoms. I have poor balance, but it's subclinical and I struggled with that before I got sick as well. If a patient presents with no brain fog or speech problems, but has a constant sore throat, runny nose, lymphadenopathy, and fatigue, it just seems like a clunky explanation to call it neurological in origin. I'm not saying it's done maliciously, but I think that it is taking a conclusion and fitting observations to that conclusion.