How Fast Is Too Fast?

[misskay]

I've been on high dose Pred since April. Started at 80mg daily, then in June we backed it down to 60 mg. 4 weeks ago we dropped to 40mg, then 2 weeks ago to 30mg. Talked to the doc today and he wants me to drop it starting tomorrow to 25mg, then in 2 weeks drop it to 20mg.

With the last drop (to 30mg) I noticed the joint pain returning, but slight. The vasc in my fingers improved though so to me it was worth the trade-off. Now I'm worried that the next drop in dose is going to make the joints flare up badly again...

So my question to you experienced WG, is it normal to drop the Pred this fast? How fast did your dosages drop, and how did you do? Pretty nervous...

btw- he also said that the loss of taste (unless it's really sweet or really salty everything tastes like sawdust) is most likely from the Pred, and dropping the dosage may help that also... thoughts?

[jola57]

We are all individual in how we drop pred. the rule is tho to go faster at higher doses and then from 15 on go very very slow.I came down from 60 to 30 in 10mg per month, then 5 per month to 15 then by 2 to 10, from 10 I have been doing 1mg per 1 1/2 to 2 months. I am down to 4mg but presently upped to 5 for a couple of days. The reason I am going so slow is because last year I tried going down as my doc suggested, fast, by dropping like you and then 2 mg every 2 weeks, and as soon as I got to 5 1/2mg I flared badly and was put on cyclo for a year. good luck, my suggestion would be to go very slow. Talk it over with your doc.

[Jack]

There are two dangers in reducing Pred.

The first is Pred withdrawal caused by your own adrenal glands failing to restart. This problem usually occurs when the dose gets below 10 mg and more usually 5 mg.

The other problem is waking up the Wegener's dog. This can occur at any time and is usually signalled by signs of returning symptoms. If this happens, you should consult with your doctor. He may well advise increasing the dose a little and then trying to reduce again a little later.

Reducing in quite big steps when on high dose is fairly regular, but as said, everyone is different and the whole process needs careful monitoring.

[JanW]

Maybe Sangye and Jack can explain this to me because I don't get it.

I always thought that pred was to get the inflammation down quickly, and once the main engine (immunosuppressant) gets the disease under control, you could drop the pred and the disease would by default, remain in control, because you had good immunosuppressant coverage by then (assuming let's say a month for the drug, or an increase in the dose of the drug). I say, by default, because of course you could always just flare, too, for reasons not completely understood.

I guess I don't understand why, if the immunosuppressant is as effective as you need it to be and fully suppressing your immune system, things start to get out of control again just by lowering pred. Wouldn't this indicate that your immuno isn't at the full treatment dose. I'm not talking about people here who have to remain on token amounts for general wellbeing...but I see a lot of people seemingly getting symptoms in the 20-30 mg range.

[Jack]

It is not fully understood why the combination of steroids and immuno-suppressants keeps Wegener's under control, but it took many years to discover this (disease first discovered in the 30s but not successfully treated until the 70s). Early treatment used immuno-suppressant only and some tests were also made using only steroids, but both were ultimately unsuccessful even if they managed to slow the progress. Today's treatment uses the combination of the two to get the disease into remission (with any luck!) and then attempts are made to reduce the potency of the drugs used and finally withdraw them if possible. I'm not sure whether many people stay in remission by taking only one of the components on a long term basis, I think this is only a transitional phase.

[Sangye]

Misskay, I'm just shocked that they kept you on such high doses for that long.... They usually only put someone on 80mg for a few days, maybe a week before dropping to 60mg. And they don't keep you at 60 for long, either. Those doses are very damaging. It looks like they were using pred as the main way to control your Wegs-- typical mistake. You can't redo the past, but please make sure a Wegs specialist okays such a thing if you ever face those high doses again.

Having been at such high doses for so long, you will inevitably have a more difficult time tapering the pred. Your body has become used to having all its ordinary inflammation completely masked, so you're likely to feel more pain as that is withdrawn.

On top of that, most people get joint pain when tapering pred. The trick is to be able to tell if it's "pred-tapering" pain or Wegs pain. For me, they feel totally different, no way to confuse them. But I was surprised at how painful the pred pain could be! A clue that it's pred pain is that it goes away after a few days of the new dose. If you are sure it's Wegs pain, don't let your doc tell you it's pred pain. That happened to me when I was first tapering off pred and the Wegs was never under control for the next 3.5 yrs.

If your vasculitis improved but you got joint pain, it's likely that the joint pain was pred pain and not Wegs. It doesn't necessarily happen every time you drop the dosage, and it isn't necessarily as bad each time. It seems random.

I suggest you keep a daily symptom journal with AM/PM notes. Include the pred dosage and any other drug changes. I find this the most useful tool in helping me figure out what's going on.

[JanW]

OK, I think that Sangye's explanation makes sense to me, that some of the joint pain is actually pred tapering pain.

I was just wondering how the gold standard was going to be only six months with any pred whatsoever for a WG patient at remission induction (as was remarked upon repeatedly at the conference) if people started experiencing symptoms again lowering past 20 mg. However, it's you're talking about the body becoming much more responsive to ordinary inflammation that makes perfect sense. It's not that the pain is caused by the WG coming back.

[Sangye]

I agree that we see a lot of people having trouble once they drop to about 20 mg pred. Sometimes I think the main immunosuppressant might not be working optimally, and that 20+ mg pred was helping keep the Wegs controlled. That was the case for me when undergoing initial ctx treatment. The ctx wasn't working, but the pred masked that a bit. Once I got below 20 mg, it revealed how poorly the ctx was working. (Too bad the doc didn't care!)

[JanW]

So exactly back to what I had said upthread. My rheumy said to me, based on what he thought was the 'tempo' of my disease (many years of stenosis, no other symptoms/damage) that the progression was slow enough that pred never had to be used at all. We can only assume that the mtx worked (and who knows what will happen if I try to wean) because I have no symptoms and bloods have returned to normal levels.

I was thinking that people's symptoms are returning because their immuno levels are too low, and that they are likely too low because they are seeing people who aren't treating aggressively because they really aren't familiar with this disease.

[misskay]

Thanks everyone for the input... I guess I won't worry too much about the returning joint pain unless it lasts a while. Other stuff sinus issues, vasc in fingertips, etc are getting better, so he's also changed my Bactrim dosage to every Mon Wed and Fri instead of everyday.

I am a little concerned though because I'm feeling more fatigued than I have been (poss the lower Pred dose not keeping me hyped up?), with a constant nagging headache (not horrible, just enough to bug the crap out of me) and some eye pressure/pain. Eyes feel dry and gritty, but water constantly, especially the right one. No vision changes though... guess I'll talk to him about that on Oct 5 when I see him again unless it gets worse.