Prednisone dosage lowered two days ago, feels like I got hit by a truck this morning.

[SpaceflightAddict]

Good morning everyone,

At my rhumey appointment on this past Tuesday, my doc wanted me to lower my prednisone dosage from 40mg to 30mg starting the next day (Wednesday 10/23). I felt fine at the lowered dosage all day Wednesday and Thursday, but this morning it feels like I got hit by a cold wet truck.

I woke up this morning around 4am with an actual headache (in addition to the usual sinus pain), my body felt stiff, and my back was drenched in sweat.

I am feeling better as of right now, about an hour after taking my morning medicine (prednisone, CTX, Bactrim), but it was a miserable couple of hours this morning.

I suspect that my body is not used to the lower dosage of prednisone yet, as I started feeling better after taking it this morning.

Has anyone else experienced this when tapering from 40mg to 30mg of prednisone? Should I give my doctor a call and let her know what happened this morning?

Thank you all for any input you have.
-Andy

[Dirty Don]

That large of a drop in pred reduction may have caused a minor drug withdrawal. Your reaction sounds like that. I'd tell the doc if for nothing else to let the person know that is too large of a reduction at once. 5mg would have been easier on you...2.5 would have been even easier. The tapering process is a bit different for everyone, but, nevertheless, a large reduction may be too fast for your body. Best of luck.

[pberggren1]

Go back up to 40 right now and call your doc, this is adrenal crisis.

[annekat]

At those higher doses, that doesn't sound like such a big drop, but everyone is different. I think docs are too casual about these tapers and should provide the patient with advice for regulating his own dose if this sort of thing should happen. Good idea to call your doc and let him know what is going on. It certainly will hurt nothing to go back to 40mg in the meantime, and probably will help a lot.

[drz]

I was given a lot leeway but some guidelines and advice on tapering and found for me going slowly seemed the best. I think most doctors will do so if you discuss it with them.

[annekat]

Andy, I'm thinking maybe you haven't been on pred all that long, since you were dx'ed fairly recently.... and maybe your adrenals wouldn't have fully shut down yet, if it's been 2 months or less.... so the doc might not have been as cautious. Or maybe I'm remembering it wrong. I my case, the doc tried to get me to go from 50mg. to 30mg. pretty early in the game.... I still felt lousy and felt it was too much of a drop, and don't remember whether I argued with him or just snuck some extra pred that I happened to have around. Of course, we are not supposed to do that, but I'd had enough previous experience with pred, from being treated for sinus infections and such, that I didn't think it was a big deal. I was already developing a sense of knowing the signs of what my body needed and how WG was reacting to the meds. That's what a lot of us end up having to do. These days, I argue with my doc about dosages and he always backs down, or if I vary from what we talked about, he doesn't get upset. With pred, anyway. Not so much with the immunosuppressant, which is currently MTX. I tend to go with what we agreed on for that and would just call him if I felt it was detrimental, like if I might be flaring.

[mzschaumkell]

Hi ya, my partner feels like that when he drops the pred, the bigger the drop, the larger the truck haha when he dropped from 60 to 40 he slept for two days....the one thing he does now, is when doctor says drop by 10mgs, he does 5 one week and 5 the next, seems to minimise the withdrawals....but doc says it's completely normal...

[Alysia]

I must say that all this issue of "adrenal crisis" scared me :scared:
I found this info helping to understand if it is so...
Acute adrenal crisis: MedlinePlus Medical Encyclopedia (http://www.nlm.nih.gov/medlineplus/ency/article/000357.htm)
and comparing to pred withdrawls symptoms:
http://www.medicinenet.com/steroid_withdrawal/page2.htm

[Rose]

Hi

I remember dropping 10mgs at time when reducing from 60mgs without too many problems. For me the problems came when reducing from 20mgs then I took it more slowly getting from 20 to 10 by dropping 2.5 mgs every few weeks. Should you go back to 40mgs as people have suggested and the symptoms you are experiencing disappear then you'll know the reduction was too fast for you...as others have said, we all respond differently. If the symptoms persist then it is probably not the pred reduction to blame.

I actually flared in the middle of my initial treatment protocol of 6xmonthly IV cyclophosphamide and 50 mgs of pred. My initial symptom of a constant runny nose returned and being Spring the doctor thought, as I was under treatment for the Wegs, it was an allergy ...until I pointed out that I never suffered allergies before so she did an anca and few other tests and sure enough I was flaring. Another round of 3xdays solumedrol and another 20lbs was soon added to 20lbs I already had gained!! This is one sneaky disease.

[annekat]

Those are interesting links, Alysia, especially the one on pred withdrawal where it talks about how alternating days , one with pred and one with no pred, can stimulate the adrenal glands and their related functions. This is what Phil is currently doing, as far as I know. My doc suggested an alternation of 10mg. one day and 5mg. the next, to get me down from 10mg. to 7.5mg., and I thought that was too radical, but in light of this info, there may be some wisdom to that kind of alternating. So I may try this pretty soon, probably not with a whole day off pred yet, but with a less extreme but still significant alternation.

[Kellie613]

Sorry for your bad feelings :( my doctor is decreasing my prednisone now too and she only lowers it 5mgs a month. I have had no problems at all. I agree that it might be too fast and hard on your body by decreasing 10 mgs at a time.

[annekat]

A lot depends on how long we've been on it and what level of dosage we are at. The longer we've been on it, the harder it is to taper because our adrenals have ceased to function after a couple months or so and can't make up for the drop. At the beginning, we are on higher doses, so 5 or 10mg drop is a smaller percentage than later when we are 20mg. or less, and I think many of us can take a drop from 40 to 30 at that stage. When we get down to 20mg and below, and have been on it a long time, a 5mg. drop can be really difficult or impossible. But no matter what the level or stage of treatment, if we are having increased symptoms and fatigue after a drop, it needs to be addressed. Everyone is different.

[SpaceflightAddict]

Sorry it took so long for me to get back to everyone, It has been a rough few days, but I am feeling ok now.


Go back up to 40 right now and call your doc, this is adrenal crisis.

I did call my doctor the morning I noticed the changes. My doctor was out of town for the weekend, but another doctor in the office familiar with my case spoke with me. I already had a full round of blood tests scheduled for that day, so the doc had me run my vitals at home (blood pressure, temperature, blood glucose). This doctor recommended that until my wegs doc was back on Tuesday, I should take the 30mg in the morning and 10mg later in the day. He assured me that I was not in "adrenal crisis" but could be experiencing some withdraw since this was the largest percentage wise drop I have had.


At those higher doses, that doesn't sound like such a big drop, but everyone is different. I think docs are too casual about these tapers and should provide the patient with advice for regulating his own dose if this sort of thing should happen. Good idea to call your doc and let him know what is going on. It certainly will hurt nothing to go back to 40mg in the meantime, and probably will help a lot.

I have been pretty sensitive to the dose of prednisone I am on, and every time I have tapered down I have noticed some changes, but never stiffness. I talked to my doctor, and at first she was reluctant, but finally agreed to take things a little slower with the tapering. I went down to 35mg on Tuesday, and things are going well, so the current plan is to go down to 30 in a couple of weeks, then to 25 after that, and even slower going forward. I am very happy that she was willing to work with me on this, because at this point, prednisone and it's side effects are having more impact on my quality of life than anything else is.

I must say that all this issue of "adrenal crisis" scared me :scared:
I found this info helping to understand if it is so...
Acute adrenal crisis: MedlinePlus Medical Encyclopedia (http://www.nlm.nih.gov/medlineplus/ency/article/000357.htm)
and comparing to pred withdrawls symptoms:
Steroid Drug Withdrawal Symptoms, Causes, Treatment - Withdrawal symptoms - MedicineNet (http://www.medicinenet.com/steroid_withdrawal/page2.htm)

Thank you for those links Alysia, they were a good read.

Hope everyone is doing well!
-Andy

[annekat]

Andy, I'm glad your doc agreed to let you go slower. Regardless of whether anyone, including your doc, thinks it's more usual to go faster, I don't see how it could possibly hurt to go a little slower. And now you know in advance that you will have to be more and more careful about the rate of taper, the lower you go. You still may be able to get off it sooner than some people, who've been on it for years.

[Wheels]

My husband goes down 2.5 a month. Then he 10 mg for 3 months and see doc end of November going to reduce more and reduce azathioprine. Going to try weaning off everything in the next year. He said going to be a rough year. Here's to hoping for the best.

[stephwest]

Hi I was on 80mg pred (day) and 15mg Methotrexate (week) 1 day after diag of GPA 7 days later down to 40mg pred (no effects) 1 month later down to 20mg Methotrexate up to 20mg (no effects) 2 months later down to 10mg pred slight increase in mucus up nose but ok. I want to self taper (next Doc consult is 1 month off) the pred tabs are in 5mg with a score down centre so should I try 7.5 mg by slitting a tab in half or do they make smaller mg size tabs. What are the first signs of taper to fast!. The side effects of Pred are bad I am now in fear of muscle breakdown, already got 2 bulging discs and a torn lower back muscle and in great pain (see my other contributions to the group) Has anybody got muscle breakdown? causing tearing or disc bulging many thanks

[annekat]

Hi I was on 80mg pred (day) and 15mg Methotrexate (week) 1 day after diag of GPA 7 days later down to 40mg pred (no effects) 1 month later down to 20mg Methotrexate up to 20mg (no effects) 2 months later down to 10mg pred slight increase in mucus up nose but ok. I want to self taper (next Doc consult is 1 month off) the pred tabs are in 5mg with a score down centre so should I try 7.5 mg by slitting a tab in half or do they make smaller mg size tabs. What are the first signs of taper to fast!. The side effects of Pred are bad I am now in fear of muscle breakdown, already got 2 bulging discs and a torn lower back muscle and in great pain (see my other contributions to the group) Has anybody got muscle breakdown? causing tearing or disc bulging many thanks Hi, Steph,
Yes they do make 2.5 and 1mg. pills but not all may be available in all places, I've heard. And my pharmacist told me that drug plans can be reluctant to issue too many different prescriptions of the same drug at once. But that is here in the US. People and docs have come up with some creative alternating plans to get the dosage they want. Some may be mentioned on this thread and I know on Phil's thread about his new taper schedule. For example, you could alternate 10mg one day and 5mg the next to get 7.5 mg, which is what my doc wanted me to do, but I felt that was too fast and am going slower. It might not be too fast for you, though. Everyone is different. Just watch your symptoms and how you feel and be prepared to take more if you don't feel right. A little increase of mucus or joint pain at first might not be enough to worry about if it goes away within a few days, or so I've gathered from reading on here. It is tricky stuff, though, so be careful.

[Debbie C]

Yea Anne,I found that part interesting too about alternating the days... The rest of it didn't make me seem to be in too much in a hurry to taper though. I'm still holding at 5mg. Thanks for sharing Alysia !

[annekat]

Yea Anne,I found that part interesting too about alternating the days... The rest of it didn't make me seem to be in too much in a hurry to taper though. I'm still holding at 5mg. Thanks for sharing Alysia ! I'd like to get down to 5mg. and that is supposed to be the plan, but I can't say it's going too well. I've been back up to 10mg. the last few days because I haven't been feeling so well and have some stress. But may start easing my way down again soon. My doc will be disappointed, but this has happened before, and he needs to learn something about Wegs by how I manage this.

[pberggren1]

Alternating days seems to be key to getting off the pred fast. Seems to be working for me. I have been doing it 2 weeks now.

[annekat]

Alternating days seems to be key to getting off the pred fast. Seems to be working for me. I have been doing it 2 weeks now. That is cool, Phil. Maybe I will try it before I see my doc again. Not as radical as yours, with days completely off pred, but alternating a higher and lower amount, like he wanted me to do in the first place. Maybe he knows more than I thought he did. We shall see.

[pberggren1]

Yes, I think it would be worth a shot to try your doc's tapering suggestion Anne.

[annekat]

Thanks, Phil. It was to be alternating 10mg. and 5mg. for an average of 7.5mg. a day, to start. This would be down from 10mg./day. I am giving it some thought. I think there was another forum member who was doing that same taper.

[pberggren1]

My doc said she has most of her patients do the alternating taper. She has over 50 vasci patients.