ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Tumbleweed on July 23, 2008, 09:39:08 pm
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Several days following CK treatment, I was rebounding quickly. But it didn't last long. 11 days post-CK (yesterday morning), I felt so profoundly exhausted it was like all the life force had been drained out of me and I couldn't catch my breath. Today I'm about 5% better, but still too fatigued to even think about walking or driving anywhere.
Unfortunately, I am scheduled to leave on an extremely important weeklong business trip on Friday. There's no way I can do it in my current condition. Dr. Chang offered that I could take steroids to lessen my fatigue, but I'm concerned about the longterm side effects of taking methylprednisolone for 6 days. The prescription is for a tapered dose, beginning with 4 mg taken 6 times on the first day and decreasing the dose by one 4mg pill per day thereafter.
Has anyone taken methylprednisolone at similar dosage for several days? Did it help extreme fatigue? What were the side effects (besides insomnia, increased appetite and weight gain, which I know about)? Did it cause any lasting negative impact to your health?
I'm trying to decide whether to cancel my trip, forego the steroids and stay home to rest. Or get the job done by taking the steroids and fulfilling all my business obligations.
Any advice, personal experiences, information or perspective would be greatly appreciated. Especially regarding the risks of taking methylprednisolone. I welcome opinions such as "I would do it" or "I wouldn't do it" if you can explain why.
Thanks,
Tumbleweed
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Tumbleweed -
personally I would do it. I'm not a medical person, but from what I know of steroids in general, they get a bad rap. When people hear steroids, they tend to think of anabolic steroids which can be dangerous if used incorrectly for long periods of time. However, steroids in general are very good drugs. When taken in small doses for short periods of time, they can do amazing things. It's usually very important to not stop taking them cold turkey, so the decreasing dose is usually the norm.
I have taken steroids on three occasions, including when I was pregnant with my twins. I was put on prednisone for a number of months because I had a history of miscarriage. I was also given a small dose immediately after my AN surgery for slight facial nerve damage. In both cases (and the third occasion), the steroids did what they were meant to do without any negative effects.
From what I know, typically insomnia and weight gain are the biggest side-effects of steroids but taking them for six days in the decreasing dose you mention shouldn't put you at a huge risk or make you have to deal with these side-effects for long.
If Dr. Chang said steroids will lessen your fatigue, I'd tend to say go with what he is telling you. He has a great reputation and I don't think he would lead you astray. For what it's worth, I think they are a great short-term solution.
Jan
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Hi Tumbleweed,
Very sorry to hear about this sudden onset of fatigue. Hopefully it will be short-lived.
It just so happens that I did a "six-pack" of methylprednisolone, the same 6 down to 1 six day treatment you are describing. It was back in March of 2007, three months before I was diagnosed. At that time, the theory was I had a plugged up ear, and that the steroids might open it up again.
There was certainly no lasting effect, negative or otherwise. I do remember being a little "elevated", or wired up, and hearing some odd sounds in my ears. I continued going to work, and sleeping at night, so it was not disruptive. I wasn't experiencing fatigue, so I can't say for sure if it would help that.
I agree with Jan, it is quite possible to take steroids, especially short treatments, without much side effect. I also later had prednisone for two weeks, and found it a little more disruptive, mostly a funny feeling inside. Even then, I could function just fine, but I was happy to stop them when I finally got the MRI result.
I hope it all works out, I know you have been worried about this trip.
Steve
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I also agree that steroids are given a bad rap. I think you need to weigh which you would feel worse about, missing your business trip or taking steroids. I know that the steroids should help with the fatigue and it will be a tapered dose so that by the time your are done with your trip you should almost me done with them.
I am sorry to hear about your fatigue and I hope it does get better soon. But I agree with Jan on this one. I would take the steroids so I could fulfill work obligations.
Julie
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I've never taken that but I am taking dexamethasone.....no noticable side effects so far. Just more hungry....LOL. It is a tough decision and some people take well to them and some dont. Some people REALLY enjoy them. I'm taking it for swelling since I'm 6months post CK.
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I`ve taken them for a clogged ear with drop in hearing. Helped me very much. There is an adjustment at least with me. I got an enourmus amount of energy with not much sleep for a while untill I cut PM dose. All said and done the benifits outwayed the adversities. Good Luck, Mickey
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Thanks to everyone for your replies. It is so very helpful and much appreciated. Anyone else care to relay their experiences and opinions? I'd love to hear them.
thanks,
Tumbleweed
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I was also afraid of steroids and didn't want to hear about them. But taking prednisone was my only option after a sudden bout of hearing loss back in December. Mind you this was a VERY high dose (50 mg) with a very long taper.
Well, I actually didn't experience any adverse side effects, other than having night sweats and being a bit dehydrated (the opposite from what everyone is saying, that usually steroids cause water retention). I was feeling more energetic than usual (but still able to sleep well). I actually lost weight (probably not because of the steroid, but because of the stress I had back then). It did work miracles for me, in that I regained all my hearing.
From reading about all the experiences that people had with steroids, everybody reacts differently to them. I think that in our condition, where we might end up having to take steroids for one reason or another, it is good to know how our bodies react to them. Given the low dose that Dr. Chang is suggesting, I wouldn't hesitate too much trying them. As a bonus, it might have alleviate some early swelling that you might experience after CK.
By the way, Tumbleweed, I did have a question for you. I read quite a few things about curcumine, being a natural antiinflammatory. I even read somewhere that it may be stimulating natural steroid production, and this is why it has antiinflammatory properties. I know you have done a lot of research on this stuff, do you have any comments or opinions about curcumine?
Marianna
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Tumbleweed,
Steroids, as everybody mentioned, generally don't go down too well and create other problems. For instance, they can cause insomnia and a feeling of jitterness, irritability and restlessness. This is hardly good during a business meeting as it can affect the results such as negotiation, perception of you by another person, etc. Naturally, you probably won't know how you react to them until you take them. I had a terrible experience with Medrol (another name for methylprednisone) but I was taking larger doses of it after my first surgery 20 years ago, so I won't mention it because it is relatively rare.
I take a herb to get rid of my fatigue- Rhodiola Rosea. It is a stimulant and adaptogen like Ginseng but it does not affect your blood pressure and works for a few hours. I take in the midafternoon to get a pick up, avoid a midafternoon slump and get rid of a nap. It also allows me to stay calm and alert - a must when you are dealing with people (steroids do just the oposite for me). It also happens to be a mild antidepressant and it does not thin your blood like St. John's Wort and some others. I recommended it on this forum, somebody started taking it and that person's experience has been like mine, in other words, if I take late in the day, I cannot sleep but read instead. Just like steroids, you won't know how you will react to it until you take it. Just for your information, I take New Chapter Rhodiola Force 300 mg. Be careful of any imitations on the market and I am sure you will do your own research. This herb works for me. It got rid of the incredible fatigue and eliminated daily naps. Thanks to it, I can get through the day. My only regret is not taking it sooner after the second surgery.
Good luck with your business meeting.
Eve
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By the way, Tumbleweed, I did have a question for you. I read quite a few things about curcumine, being a natural antiinflammatory. I even read somewhere that it may be stimulating natural steroid production, and this is why it has antiinflammatory properties. I know you have done a lot of research on this stuff, do you have any comments or opinions about curcumine?
Marianna
I'm currently taking 665 mg of curcumin 2x/day as a prophylactic measure against both tumor inflammation and recurrence. Before I had CK, I was taking it 3x/day to stop the tumor from growing (curcumin has been shown in medical research studies to stop angiogenesis, or the sprouting of new blood vessels necessary for tumor growth). Unfortunately, it didn't work; my tumor grew anyway, and faster than normal, prompting me to get CK treatment. Perhaps it would've grown even faster if not for the curcumin. Who knows?
Anyway, when in the past I doubled my dosage, it gave me stomach cramps. So 665 mg was my personal limit for each dose. I might consider taking it 3x/day while I am fatigued, but I don't know if the fatigue is due to inflammation or something else. Does anyone on this board know?
Best,
Tumbleweed
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Tumbleweed,
Steroids, as everybody mentioned, generally don't go down too well and create other problems. For instance, they can cause insomnia and a feeling of jitterness, irritability and restlessness. This is hardly good during a business meeting as it can affect the results such as negotiation, perception of you by another person, etc...
I take a herb to get rid of my fatigue- Rhodiola Rosea.
Eve
Eve, thanks so much for this great info. I'm not familiar with Rhodiola Rosea but will try to get some today at my local natural-foods store. I've avoided taking ginseng since summer arrived because it can slightly increase one's susceptibility to becoming overheated.
Decadron made me very jittery, so your warnings hit home. I tend to get tense during these kinds of business trips to begin with, so hopefully I can try the Rhodiola first (if I can find it before leaving on my trip). If I can't find the Rhodiola before I leave, however, I'm afraid I'll have to take the steroids to make it through this trip.
Thanks again,
Tumbleweed
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Eve, I found this herbal extract at my local store. :) It's great that I can start taking it today. It's not New Chapter brand but is produced by a reputable local grower of organic herbs. It's a solid extract (powder) in capsules.
The dose is 450 mg per capsule (higher than what you take).
Have you ever taken your 300mg dose twice in one day? If so, how'd you do on that? I get exhausted about two hours after awakening, so I might need to take the herb twice daily during this business trip. I generally tolerate high doses of herbs well.
Thanks,
Tumbleweed
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Tumbleweed,
You also asked about exercise and rest during AN- related fatigue. Exercise really works but the key here is not doing too much of it and doing it on a regular basis (perhaps twice a day). For instance, you are used to running a lot and you are just too tired. Take a walk instead of running. If weight training is too hard now, do less weights for less time. I should also mention that poor balance contributes to fatigue, so you might want to do yoga regularly because that is an excellent way to improve it. In other words, a complete lack of exercise (resting all day) contributes to fatigue by generally deconditioning the body and worsening its balance whille too much of exercise robs you of the precious energy that you hope to use somewhere else. Unfortunately, fatigue has been my middle name all my life ( that is how long I had AN) and I do use exercise to manage this incredible tiredeness. I always use the analogy that I am like a bad car that needs a tune-up daily. Whenever I am on periods of forced bed rest for some reason, it takes me some time to get into the previous routine.
Fatigue, like Phyl mentioned, goes along with AN and its treatments for most people. Those lucky few that don't have the fatigue, are really lucky! I found that a good night's sleep is a must for my daily functioning. Without it my balance is poor, I cannot concentrate and cannot even complete my exercise routine. I NEVER skimp on sleep. I need my 7 hours daily. I also found that daily naps are very useful but they became a nuisance because I could not get through the day. I eliminated them with Rhodiola. Hope it helps.
Eve
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Thanks, Eve. You've made some good recommendations.
Here's some useful info on Rhodiola I found online:
http://en.wikipedia.org/wiki/Rhodiola_rosea
Based on that info, I can probably take Rhodiola 2x/day if needed. I'll start with one dose today and see how it goes.
Thanks again,
Tumbleweed
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Tumbleweed,
You need to be really careful with the local growers of the herbs because you might not get the effect from their herb you are looking for despite their best efforts. The reason is that the real Rhodiola has the second name rosea and comes from Siberia. It was given for years to the Soviet athletes and aging Soviet politicians to increase their physical and mental stamina so there is solid research about its effects. It only recently came to the US but it has been popular in Europe for much longer, definitely since the Soviet Union fell apart. Moreover, different formulations on the market have different ratios of Rhodiola's constituents (rosavins and salidrosides). The optimum one for energising effect is at least 3:1.
I have not been taking more than 300 mg because while doing my research, I read that lower doses of Rhodiola Rosea (below 300 mg) have stimulating effect while higher doses (greater than 300 mg) have sedating effect. I am after stimulating effect, in fact, everything sedates me, even non-sedating antihistamines. I am also a small person, absorb everything I ingest and need smaller doses of just about everything (drugs, vitamins and herbs) to be effective. I was looking to get rid of my daily naps and 300 mg did it. There is no way from my experience I can have a very long day with no sleep but you might very well be different just because you did not have a huge tumor. You might have to experiment with dosages and brands of Rhodiola Rosea as well as ratios of its active constituents. More is not necessarily better. Let me know how it works out and actually what dose and brand is the best for you.
One more thing I should mention about steroids. They give you an increased energy while you take it. After you stop taking them, they can actually cause extreme fatigue and depression. I always say that I am elated while on steroids (impatient and irritable also but energetic) but crash and burn afterwards.
Eve
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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
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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
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Thanks, Eve, for your additonal insight.
Francesco, I'll be sure to post my experiences with the herb.
Best,
Tumbleweed
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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
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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!
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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
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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
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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.
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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
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Safe successful travels, TW. Keep us posted.
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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
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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
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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
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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
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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
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K, are you still fatigued after your AN was removed so many years ago? Maybe, it's the mother thing? I can relate to both! I hope you get the effect you are looking for.
Tumbleweed, I prefer the analogy of a lifeless flower rather than dead horse when I am exausted! It sounds a little better to me. Regardless, vitality was in short supply after AN removal, for sure.
Eve