Fatigue and Prednisone reduction

[LovinLife]

Hi all,

After I was diagnosed 3 weeks ago in Colorado my husband found your website. He posted my story (Just diagnosed in Colorado - LovinLife) and you were all very encouraging and helpful as we were scared to death of what impact having Wegener's would have on the rest of my life. Thank you for your kind words. I was still dealing with the diagnosis and not really ready to face all the specifics. Now after reading many of your stories and posts I feel that I am starting to get a realization of what I have to "look forward to" so to speak. It has been very helpful to me.

Now Im ready to ask a few more questions on my own. I went to my Dr. last week for the first time since leaving the hospital on Dec. 5th. I guess now is a good time to say my WG involves lungs and sinuses. I was very fortunate that the pulmonologist immediately suspected WG in the hospital and had actually seen it before and treated it. He started me on prednisone and cytoxin. As of the dec 19 the Dr started decreasing my prednisone from 60mg to 40 mg on alternative days. My question is that on the 40 mg days I seem to be completely wiped out with fatigue. I don't know if this is because of the medication decrease, or if its just part of the unpredictable nature of WG but I can almost set a clock to it at this point. Next week I'm to reduce to 30mg alternating with 60mg. I don't know if I can expect the fatigue to increase even more. Any answers from your experiences would be helpful.

So glad I have a fantastic husband who found your website for me. I don't feel so overwhelmed after reading all your stories.

Thanks,
LovinLifesWife

[Debbie C]

First I what to say welcome to you amd your husband and unfortunately that you had to find us. But what a good man you have to take the time to search for answers. And you will find alot of them here. There are so many knowledgable,caring people here and it is open 24-7 since there are people all around the world on here at all times. So any time you feel the need to vent ( which I am sure you will ! ) or just want to talk or have guestions ,we are here. As far as the fatigue,unfortunately that is one thing that never seems to go away. It won't be as bad on some days but you will need to manage your energy level. There is a thread on here about " saving your spoons " that you might find interesting. It basically is about knowing how much you need to do and how much energy you have to do it and sometimes you just run out of spoons ( energy. ) Sounds like you have good drs. ( and a good hubby ) and things will get better. Its just a different kind of life now but you can still keep on loving it. Happy holidays to you and your family.

[vdub]

I think all of us have good days and bad days, some days with pain and fatigue, others with just fatigue, and some days are just spectacular. You never know what you're going to draw when you wake up in the morning. Planning or making any future commitment is kind of difficult. I've had many days where I woke up and just wanted to go back to bed, so I did. Sometimes I would sleep for 12 or 16 hours after a nights sleep. I don't know what happens, but I think your body just needs to reset sometimes.

You don't want to be on the pred any longer than necessary. Eventually, you will be tapered down to 10mg or less. Some people are off it entirely. I was totally off pred for a couple years and it was difficult to be pred-free. I'm currently on 5mg/day and it seems to be a nice balance.

Life continues, tho. Good luck!

[Alias]

I think feeling tired, wiped out, overwhelmed in general is to be expected in the first phases of treatment. I was not on Cytoxin, but I had a full month of prednisone at 60 mg. before tapering to 40 mg. I was simultaneously exhausted (from being so debilitated by illness) and energized by the prednisone, which is very stimulating, so not a lot of sleep was had during those first weeks of treatment. Maybe the "see saw" effect you are experiencing is due to the alternating doses you are taking. I can only guess that this will subside as you taper further and your body gets used to the meds. Hang in there - things will get better!

[Pete]

Hi Mrs LovinLife,

I'll add my two cents worth about prednisone tapering...

I think part of your problem is the up and down between 60 mg and significantly lower doses. My rheumy agreed that getting off prednisone is a good thing for a lot of reasons. However, her approach was a slower taper. On my current taper, I was at 60 mg and reduced 10 mg/month down to 20 mg. From 20 mg, I reduced 1 mg every two weeks down to 10 mg. From 10 mg, I reduced 1 mg/month down to 3 mg. at that point, my creatinine began rising, so I've held at 3 mg while increasing methotrexate from 15 to 20 mg/week. My creatinine has returned to normal. Last month, I dropped from 20 mg of methotrexate back to 15mg/week. I'm still holding at 3 mg of prednisone.

At the moment, I'm able to live a normal lifestyle. I'm going to discuss with my rheumy the pros and cons of either getting off methotrexate or of getting off prednisone. If I had my 'druthers, I'd rather be off methotrexate and continue holding at 3 mg of prednisone while we see how I do with no immunosuppressant. If I stay stable, then I'll ask to finish the prednisone taper and get into a full remission.

It's taken me 14 months to get here, but I haven't had a bad day during this time. Please discuss your symptoms with your wegs doctor. Good luck.

[KathyB]

Welcome and best wishes as you begin understanding more about WG and how to best deal with the disease. You'll glean a lot of information here, but it's important to realize WG effects each of us differently. My prednisone tapers were much as Pete described and it's my maintenance drug (5mg) after Rituxan infusions. Like so many others, I "manage" the side effects and am thankful for each day!

[Jaha]

Welcome and I too was amazed by your husband finding this site and getting actively involved. Having him aboard will be very helpful, to doing research when you don't feel like it. I am so glad that you got a dx and tx so quickly, that is really important in getting to remission sooner. I agree with others here about the quick taper, maybe talk with your doctor and see if their might be another way for you, a bit slower. You could also still be tired and run down from the CTX treatments. Wishing you all the best and like was said everyone reacts differently to our treatments. Take care of yourself and get as much rest as you need right now.

[me2]

Welcome LLWife,
Alternating doses is not the only way to reduce prednisone. I wouldn't second guess your doctor but I would suggest that you could talk to your doctor about trying simple reductions like Pete is talking about.

Myself, I find that the alternating reductions puts me in a seemingly never ending state of being jerked around. I prefer to do a simple reduction and get my fatigue over with in a few days and then level off again in how I feel. Of course this is just me.

Sometimes my doctor will suggest the alternate reductions to me and I'll say "I don't like to do reductions that way , what is a different plan that lets me drop at a consistent dose?" . He always listens to me and comes up with a different plan.

WG does cause fatigue but the clockwork nature of your experience suggests that your reduction plan might be involved.
It's not like your plan is ever set in stone either. As you gain experience with what works for you and what doesn't you can help your doctor to make decisions that work best.

[annekat]

Speaking from my own experience, I also had lung and sinus involvement and was started on CTX and 60mg. pred. The doc lowered the pred to 40mg. after 2 or 3 weeks, no alternation, and I might have preferred going to 50mg for a time, and don't remember whether I talked him into that; I think I just stuck with the 40mg. BUT, I really think a lot of my fatigue was due to the CTX, as well as the disease itself, and the toll it had taken on my body. CTX does have that side effect for many and it takes some time to get used to. I did get used to it gradually. Three weeks is not very long; I think it took more like 5 or 6 weeks for me to stop noticing its side effects so much. I can't really comment on the alternating method of pred reduction at that level, but would suspect that the days of higher pred are helping combat some of the fatigue you are feeling from the CTX.

[LovinLife]

Thanks everyone. I am still learning about the roller coaster of all this. I am definitely going to have to learn to take it a day at a time. I'm so very glad that I now have a place to go and talk to others it certainly helps not feel so alone.
LovinLifes Wife

[mrtmeo]

I would think that alternating pred doses would make determining a flare difficult.
A straight slow taper makes more sense, but that is just my opinion.

[annekat]

I would think that alternating pred doses would make determining a flare difficult.
A straight slow taper makes more sense, but that is just my opinion. I think the idea is that over the two days of alternating, it averages out to a solid amount, and that having a day of reduced dosage, or in some cases no dosage, would sort of "kick start" the adrenals. But that would mainly apply at the lower dosages, when a person had actually been on the medium to higher doses for long enough for the adrenals to have shut down. At the initial higher doses like 40-60mg., I don't really see the point, or that alternating 40 and 60 would be much different overall than just going to a straight 50mg. At that point, the person would still be too sick to think about flaring, since they are already flaring. As for the alternating at the lower doses like 15mg or lower, I think some people on here have successfully gotten off pred that way. I'm a little afraid to try it myself, because I know my adrenals are toast, and I'd be worried about how I'd feel on the low or no dose day. But I might try a moderated version of it and have seen some interesting taper schedules of this kind on here in the past.

[mrtmeo]

I think the idea is that over the two days of alternating, it averages out to a solid amount, and that having a day of reduced dosage, or in some cases no dosage, would sort of "kick start" the adrenals. But that would mainly apply at the lower dosages, when a person had actually been on the medium to higher doses for long enough for the adrenals to have shut down. At the initial higher doses like 40-60mg., I don't really see the point, or that alternating 40 and 60 would be much different overall than just going to a straight 50mg. At that point, the person would still be too sick to think about flaring, since they are already flaring. As for the alternating at the lower doses like 15mg or lower, I think some people on here have successfully gotten off pred that way. I'm a little afraid to try it myself, because I know my adrenals are toast, and I'd be worried about how I'd feel on the low or no dose day. But I might try a moderated version of it and have seen some interesting taper schedules of this kind on here in the past.

I would think an alternating taper would only confuse the adrenals.
The body likes a gradual reduction in dose when tapering off benzodiazepines, for example, so that it can gradually upregulate the missing item in the body.
I don't know what the half life of pred is, but I would guess it is not that much different to other drugs.

Titration works very well with tapering many drugs because the body gets used to the slow lowering of the drug and upregulates the necessary receptors and chemicals.
The body is always trying to reach homeostasis (balance).

[ozterry]

Like many of the others, I reduced slowly from 50mg down to the 20mg I am on now, but I tend to blame the cyclophosphamide for the tiredness and lethargy. Some days are good and I make the most of them, when tiredI rest as there is little choice. However I am retired and have few obligations that I can't postpone, so not so demanding on me. Yes "spoons" are a great reminder in balancing our activities whatever they may be.

Terry

[MikeG-2012]

I would think that alternating pred doses would make determining a flare difficult.
A straight slow taper makes more sense, but that is just my opinion.

It is a pretty standard rheumatological practice to alternate days when tapering down prednisone. I did it from 5 for a month and then to 5 every other day for a a month. I was told all major studies have proven that taper just as effective as the 2.5 every day.