Need advice regarding methylprednisolone for fatigue

[Tumbleweed]

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

[leapyrtwins]

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 

[sgerrard]

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

[JulieW4]

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

[mindyandy]

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.

[Mickey]

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

[Tumbleweed]

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

[mk]

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

[jerseygirl]

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

[Tumbleweed]

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

[Tumbleweed]

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

[Tumbleweed]

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

[jerseygirl]

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

[Tumbleweed]

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

[jerseygirl]

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