Author Topic: Need advice regarding methylprednisolone for fatigue  (Read 28765 times)

jerseygirl

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #15 on: July 24, 2008, 12:03:51 pm »
Thanks, Tumbleweed, for an excellent article!
Maybe,, I should try a bigger dose to see if I can get more of a good thing!
         Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

fbarbera

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #16 on: July 24, 2008, 12:25:33 pm »
I did an initial course of steroids along the lines of what Dr Chang is proposing and it helped with symptoms and I did not have side effects.   Later, I did a three week taper of Decadron at significantly higher dose levels -- it helped with symptoms but was very disruptive.  No sleep, voracious appetite, etc.   

I'm not a fan of medication in general and think it is best avoided if possible.  I used them to get through some rough patches and they helped but I still have very mixed feelings about them.   Bottom line for me is I wish I didn't have to take them but at the time I felt that I did, and they helped.

If you go forward, keep dose levels to a minimum.

If you find the herbal remedies to have a noticeable impact, please post about it.

Regards,

Francesco

Tumbleweed

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #17 on: July 24, 2008, 12:47:28 pm »
Thanks, Eve, for your additonal insight.

Francesco, I'll be sure to post my experiences with the herb.

Best,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

mk

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #18 on: July 24, 2008, 01:09:10 pm »
This information on Rhodiola is very interesting. I have been dealing with fatigue for more than a decade now (probably a result of the presence of the AN  ???). Although I don't feel more fatigued after GK, I might try it.

I took curcumin after my GK and I found that it gave me increased energy levels. This is potent stuff, it also gave me some weird side effects, such as night sweats (similar to those that I had with steroids) and horrible abdominal cramps etc. It is interesting that Tumbleweed mentioned about cramps too, I wasn't expecting  such a  side effect (I wasn't taking a high dose, 1-2 pills a day) and I ended up stopping the curcumin. Too bad, because I was hoping it could help prevent potential swelling problems.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

windy

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #19 on: July 25, 2008, 10:07:33 am »
I took methylprednisolone in the six day dose pak when I went to the ENT physician in May, after my hearing loss.  It was like a miracle drug for me.  As I have arthritis, I thought I had not felt this well since my 20's!  It seemed to cure all my ills, so to speak.  I also lost 7 pounds within five days (probably due to all the fluid I retain).  I did not put the weight back on, either.  I felt like I was on speed.  I was full of energy.  I cleaned for two days straight!

There was, however, a down side in my case.  I had increased blood pressure, increased heart rate, red flushed face, and increased blood sugar.  It seemed to correlate with taking another drug of Prilosec.  It only happened two days of the days I took it and it was on the days I was taking the Prilosec.  I actually had to go to the ER.  They told me it was common with this drug and I could "either take it or not take it".  I decided to continue to take it but I lowered the dosage to less than what they had for each day and tapered down with less pills per day.  I finished the pak in 8 ot 9 days, versus the six days.  I did feel really bad for a day after finishing the medicine, but only for a day.  For me, I had aching all in my legs, but it could be due to my arthritis. 

I feel fine after taking the drug and it actually helped me feel physically well for a while.  If it were me, I would want to take the drug, as it is not a long term dose you will be taking.

Good luck, Tumbleweed.  I wish you the best in a speedy recovery!
« Last Edit: July 25, 2008, 02:39:34 pm by windy »
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

Tumbleweed

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #20 on: July 25, 2008, 10:11:36 am »
Marianna, perhaps you should try taking the curcumin along with carminative and demulcent herbs and see if that prevents the cramping. If you powder up some anise seed (carminative; would expel any trapped gas if that's what the curcumin is creating) and marshmallow root (demulcent; would soothe mucous membranes in the digestive tract if the curcumin is irritating them), and take it with some water right before taking the curcumin, it might mitigate the tendency toward cramping and allow you to keep taking the curcumin.

I tried one 450 mg dose of rhodiola yesterday and the results were incredibly positive. It cut my fatigue in half. I went from sitting at a table with my head in both hands and being very short of breath (before taking rhodiola) to working at my computer only 40 minutes after taking the rhodiola. I was so wiped out beforehand, this could not possibly have been a placebo effect. However, I also ate a bunch of watermelon right after taking the rhodiola, so it's possible the sugar rush is what lifted me. The jury is out until I take it several times again and see if I get consistent results. In any case, the rhodiola seemed to give me a big boost for the first couple hours, was still working slightly after 4 hours,  and completely wore off by about hour 6.

I'll report back to the forum on this in a couple weeks. I'm headed off on my business trip -- for better or worse-- later today. I'm going to take rhodiola for my fatigue, but I'm also traveling with my steroid prescription in case I need it. I'm suspecting I probably will have to take the steroids, as this trip is going to be very demanding. Hopefully I won't fall flat on my face far away from home. I'm going on sheer faith and willpower.

Best wishes to all,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #21 on: July 25, 2008, 10:16:51 am »
I took methylprednisolone in the six day dose pak ... There was, however, a down side in my case.  I had increased blood pressure, increased heart rate, red flushed face, and increased blood sugar.  They told me it was common with this drug and I could "either take it or not take it". 

Hi, Windy:

Thank you for sharing your perspective. Do you mean to say the ER doctors said your increased blood pressure, increased heart rate, red flushed face and increased blood sugar were common with taking methylprednisolone or common with taking Prilosec?

Thanks,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

windy

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #22 on: July 25, 2008, 07:49:04 pm »
I took methylprednisolone in the six day dose pak ... There was, however, a down side in my case.  I had increased blood pressure, increased heart rate, red flushed face, and increased blood sugar.  They told me it was common with this drug and I could "either take it or not take it". 

Hi, Windy:

Thank you for sharing your perspective. Do you mean to say the ER doctors said your increased blood pressure, increased heart rate, red flushed face and increased blood sugar were common with taking methylprednisolone or common with taking Prilosec?

Thanks,
Tumbleweed

According to the ER physician, the symptoms were common with the drug, alone.  It is a drug that helps many things, but you do have to be cautious in taking the drug.  I felt it was a wonder drug for me, even with the side effects.  I do know you have to be quite careful in your dosing down of the drug.  You should not abruptly stop taking the drug because it can have very negative effects.  That is why the dose pak is given with a decreasing dosage.

As far as the callous advice I was given in the ER, I live in a small town in the "Deep South" and our healthcare often lacks in regard to other areas of the U.S.  As a matter of fact, I never even saw the physician on duty that night, he just relayed a message through a nurse!  I make it a habit of doing my own research and take what the local physicians tell me and pair it with what I find through research.

I do want to stress I am very sensitive to drugs and have had numerous drug reactions.  I would not be good example of a patient on any type of drug, as far as a typical reaction.  Most people I know personally who have taken the drug handled it fine.  I wish this for you, if you decide to take the drug.   
   
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

JulieW4

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #23 on: July 25, 2008, 09:36:03 pm »
Tumbleweed,

Look forward to hearing from you after your business trip to see if you just had to take rhodiola or needed to also have some help from the steroids. 

I may try rhodiola soon since fatigue is something I suffer with even before surgery but now it is really bad.

Julie
2.7mm X 3.7mm AN
misdiagnosed for 13 years
complete hearing loss on right side
Had Translab surgery on June 30th, released from hospital 48 hours after completion of 5 hours of surgery
BAHA abutment surgery on Oct. 31st, received processor on Dec. 4th

fbarbera

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #24 on: July 25, 2008, 11:18:52 pm »
Safe successful travels, TW.  Keep us posted.

mk

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #25 on: July 26, 2008, 06:48:31 pm »
Marianna, perhaps you should try taking the curcumin along with carminative and demulcent herbs and see if that prevents the cramping. If you powder up some anise seed (carminative; would expel any trapped gas if that's what the curcumin is creating) and marshmallow root (demulcent; would soothe mucous membranes in the digestive tract if the curcumin is irritating them), and take it with some water right before taking the curcumin, it might mitigate the tendency toward cramping and allow you to keep taking the curcumin.


Tumbleweed, thanks for the suggestions. After what you mentioned about doses I checked the bottle again, and every pill is 500 mg, meaning that probably I was taking too high a dose (2x500mg) and this is what caused the problems. So I decided to try again, with just one pill a day.
 I hope that your business trip goes well and you are feeling better.
By the way, I had my 3 month post GK follow up and MRI. I haven't received the actual report yet, but based on what I can tell from the MRI images there is essentially no change, meaning no swelling  :). Maybe the curcumine did its job after all  ;D

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Tumbleweed

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #26 on: August 04, 2008, 07:49:28 pm »
Hi, everyone:

I made it back from my business trip alive!  ;D

I managed to avoid taking the methylprednisolone for the entire trip. I took one or two 450mg rhodiola capsules per day (1 at a time) and it gave me enough of a boost to pull me through. The trip was a big success and I never got so fatigued that anybody had a clue I was ill. I don't know if it was the rhodiola or pure coincidence, but I started to rebound strongly on the second day of my trip (Day #15 post-CK; Day 3 of taking rhodiola).

Symptom-wise, the rhodiola's effect was more noticeable at some times than at others. Sometimes I would barely notice a boost from taking it, whereas at other times it was like a miracle herb, cutting my fatigue in half. I think the varying effect might be due to how much food I had in my stomach when I took it; the bottle instructs one to take it on a somewhat empty stomach. I got the biggest boost when taking it on an empty stomach, followed by eating a large piece of watermelon. Soon afterwards, I had big watermelon/rhodiola burps  :) and clearly felt a big boost of energy. I think all the fluid from the watermelon helped dissolve the rhodiola (which is a powdered root) so it was absorbed faster and more completely.

Marianna, FWIW I find that if I take my curcumin in the morning and afternoon, and avoid taking it close to bedtime, it doesn't bother my stomach.

Best wishes to all,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

jerseygirl

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #27 on: August 10, 2008, 02:36:15 pm »
Hi, Tumbleweed,

Glad you made it through the business trip! I am really happy you did not need steroids after all. One neurosurgeon said "They cuase more problems than they solve". I try to stay away from them unless absolutely necessary.

It is interesting that you noticed rhodiola's effect more noticeable at some times than at others. I did also. I explain it by the fact that I have a lot less fatigue now at 13 months post surgery than at 9 months. Rhodiola's effects for me are more noticeable when I am absolutely exausted and less so when I feel good which is becoming more and more often.

       Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Tumbleweed

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #28 on: August 11, 2008, 10:38:25 am »
Rhodiola's effects for me are more noticeable when I am absolutely exausted and less so when I feel good which is becoming more and more often.

       Eve

After taking rhodiola now for almost 3 weeks, I'm noticing the same thing, Eve. When I'm absolutely exhausted, it provides an amazing energy boost. When I'm less tired, the effect is mild. This is encouraging to me, because it suggests that the herb boosts one's vitality rather than simply pumps your body full of adrenaline. It feels to me like it's not kicking a dead horse, but rather bringing it gently back to life. If I may be so pathetically poetic...

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Kaybo

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Re: Need advice regarding methylprednisolone for fatigue
« Reply #29 on: August 11, 2008, 11:36:07 am »
I have Rhodiola on order - should be getting it any day.  I am anxious to see how it works for me!!

Thanks for the tip, Eve!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!