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View Full Version : Prednisone for ever and evermore?



Kimbangu
03-19-2010, 08:06 PM
Hi, I was diagnosed Nov2009. Mr. Wegener has so far confined his attentions to my right hand, hearing loss and kidney problems.

I have been on regular cyclophosphamide infusions since then. Started off at 60 mg prednisone and presently at 15 mg/day.

On my last visit to hospital there was some discussion about the tapering of prednisolone. They're just following a protocol ( reduce by 2.5 mg every 2 weeks) and I was interested to know what happens when we get to 5 mg/day. I know from reading this forum that this is when the fun starts.

I was a little surprised therefore to learn that when they get me to 5, the idea is to leave me at 5 mg/day for a year. Assuming I am in remission they will keep me at 5 mg for a year. The thinking seems to be that if I am stable and in remission at 5, is it worth ever trying to cut it out completely? When I asked about the long term, I was told that many WG people never manage to get off Pred completely.

Well, I thought the idea WAS to get off prednisone completely. I know that this particular medication has undoubtedly saved my life but I hate the side effects.

Any thoughts on this? - should I count my blessings and accept I'll be on Pred for ever? ( I'm only 56) .... or when the time comes, should I be more insistent that I want off steroids completely? - Because I am already getting the feeling they won't push this decision, and they seem to be quite happy to leave it up to the individual(?)

Jack
03-19-2010, 08:55 PM
The regime they are suggesting sound to be about right although everyone is different. I myself can't get below 10 mg without intolerable problems, but others manage to get off it completely. Unfortunately you are right about the side effects, I've had most of them and they are a real problem, but the alternative is even worse. Welcome to the world of Wegener's! :)

Sticking at 5mg for a year and then perhaps trying to ease it down even further sounds like a reasonable plan to me. You are still at a fairly early stage in treatment and for now I would be far more concerned about getting off the cyclophosphamide and onto something less toxic if your symptoms seem to be under control.

Kimbangu
03-19-2010, 09:32 PM
Thanks Jack, much appreciated. You are my guru in these matters!

elephant
03-19-2010, 10:02 PM
I agree with Jack, I can't get down below 10mg of prednisone either. I got down to 5 mg three months ago and had to increase it to 10mg. My ears and sinuses got worse. They seem better since I increased it to 10 mg.
Being on 5 mg of prednisone for a year is not bad. After my Kidney tranplant in 1989, I was tapered down to 5 mg of prednisone and stayed on that for 10 years. Then I talked to the Transplant team about me getting off. But that all changed in July 2008 ....prednisone, prednisone.....I will be on it for life.

Jack
03-19-2010, 11:14 PM
That's interesting. I used to be able to manage on 5mg after transplant, but can't get away with it anymore.

Sangye
03-20-2010, 12:36 AM
(I love your new avatar Timbo!)

A lot of Weggies can get off pred. I was off it for 2.5 yrs (after starting with 1,000mg IV pred and tapering from there). Our docs are very anxious for us to get to 5mg for sure but really want us off pred altogether if possible. Even at 5mg there are many consequences--short-term and long-term. As long as you don't have a major flare and/or do damage, any time off pred is a good thing. It lets the body repair a bit.

I think the plan to keep you at 5mg for 1 year is looking too far down the road. A Weggie year--especially for newly diagnosed-- is a very long time. Maybe just take it 3 or 4 months at a time and see where you are.

JanW
03-20-2010, 01:01 AM
I agree with Jack and from what I have read, reducing the most toxic immunosuppressant, in your case ctx, is the first concern (many in US are going with a 3 to 6 month timeframe on it if they can get away with it). Listen to what Sangye is saying -- even at 5 mg there are long and short term consequences -- I was never on much more than that with asthma (and not consistently at that) and my bones are shot. I was shocked that even though I last got a one-dose steroid shot in September they gave me extra steroids during my surgery -- surgeon and doc agreeded that my adrenals would be no where near normal. And that was one shot at the allergist for allergic nasal inflammation (sorry, doc, that turned out to be Wegs).

Sangye
03-20-2010, 01:06 AM
I can't even tolerate 5mg pred. I can barely tolerate 4mg. Your bone loss is exactly what I mean, Jan-- pred at any dose is still causing harm. The docs say 5mg is close to what the body makes so it won't cause bone loss, etc... BALONEY. It's a synthetic steroid and the body knows it.

"It's not nice to fool Mother Nature."

JanW
03-20-2010, 01:09 AM
Seriously. I probably took pred less than a dozen times, over five years, at doses no more than 5 mgs a day (several medrol step-down packs in there), and I am an African-American, so starting out with more bone density -- yet my DEXA shows significant pre-menopausal bone loss. My doc's big thing is that doctors prescribe steroids because they are so much more comfortable with them than they are chemo drugs and yet they don't look at the devastating side effects down the road. As little as possible (or none) for as short a period as possible is his motto. My pulmo wrote the script for them all the time, and my allergist loved giving a shot of it every once and a while if you complained of allergies.

DEE
03-20-2010, 01:11 AM
im still on rollercoaster of preds nearly got down to 20 mg !!!!!!!! now on 55mg again coming down 5mg every two weeks untili get to 30mg but glad to say it helped with ear infection DEE X

Sangye
03-20-2010, 01:30 AM
My doc's big thing is that doctors prescribe steroids because they are so much more comfortable with them than they are chemo drugs and yet they don't look at the devastating side effects down the road. As little as possible (or none) for as short a period as possible is his motto.
Yup. This is what Wegs specialists appreciate that non-Wegs specialists don't. Hence all the talk about "pred-sparing" drugs and protocols.

DEE
03-20-2010, 02:37 AM
Sorry did not make myself clear a workmate just came for a cuppa!! im also on increased chemo too as consult had previously lowered both and i found myself with various probs eg nose bleeds back headaches etc and feeling rough in general and inflamation of joints back big style !
it was agreed to stay on these until april then we will review together
having full bloods liver function done monday also seeing gp thursday so hoprfully got things covered unless anyone can think of anything else i should be asking about DEEx

Kimbangu
03-20-2010, 02:44 AM
[QUOTE=Sangye;12754](I love your new avatar Timbo!)

That's not an avatar Sangye- it's an actual photo! that's what cyclophosphamide/prednisolone/amlopidine/perindopril/co-trimoxalzole/atelonol does to a person.....

Jack
03-20-2010, 03:10 AM
You probably should be taking Ramipril in place of or in addition to Amlodipine. It protects the kidneys. There are lots of posters about it on the walls of my renal clinic. They say, "If you are not taking it, ask the doctor why not?" ;)

Kimbangu
03-20-2010, 03:49 AM
Nice one Jack. I'll get into their necks about this on Tuesday when I go in for my next blast of cyclophosphamide. What I am finding is that you really have to drive the process. I'm hoping they will change me to azathioprine soon.

Sangye
03-20-2010, 07:47 AM
Yes, you definitely have to be in the front seat with your docs!

I love your comment about your new photo, Timbo. Pred is sure not giving you extra chins and neck fat, though. And WHERE is your moon face? :D

moyan
03-20-2010, 08:33 AM
[QUOTE=Sangye;12754](I love your new avatar Timbo!)

That's not an avatar Sangye- it's an actual photo! that's what cyclophosphamide/prednisolone/amlopidine/perindopril/co-trimoxalzole/atelonol does to a person.....

Those persons are very popular here. A whole series of programs of wars between 2 groups of them in a desertlike surroundig. Kalahari?
Cute as can be.

Kimbangu
03-20-2010, 09:07 PM
It's even worse over here at present- they are using the little varmints to advertise a car insurance website- they're everywhere!

pberggren1
03-20-2010, 09:17 PM
Meerkat Manor?

Sangye
03-21-2010, 12:21 AM
I saw the promos when it first started--hilarious.

moyan
03-21-2010, 02:29 AM
Phil, yes. I used to reserve Wed night for it, so well produced.

JanW
03-21-2010, 03:17 AM
I know that we've gotten off into talking about Meekrats, but I'm following up on what my doc said previously about pred. He was talking about the discovery of it and how docs at Mayo won the Nobel Prize (and it saved John Kennedy's life because he had Addison's Disease, so changed the course of history), and he said that they showed all of these films of people with RA or lupus essentially on their deathbeds rising up within 24 hours to live "normal" lives. Any of us who have ever been on pred no how wonderful that feels (I felt great in the hospital). What the films didn't show were the devasting side effects that they lived with as a result.

I have severe osteoperosis of the spine, and osteopenia of the hip that may turn into osteoperosis. My advice to any would be to make sure that your doctor explains to you the risks of these drugs. You may have to take them, or you may not depending on your doc's advice. I took them very rarely at fairly small doses, except for my inhaled asthma medication, which the doc assured me was as damaging. I still ended up in this place, and I am 44, premenopausal and an African-American woman, so my bones should be denser than average. I had no idea infrequent use over five years could lead to this, and frankly thought my rheumy was being a bit alarmist about ordering a baseline DEXA and wanting to check if my inhaled asmanex had caused me damage. Turns out his hunch was right. He said to me he has never been burned so badly as a rheumy as went prednisone "went wrong." He called it "very humbling."

Sangye
03-21-2010, 03:36 AM
For the life of me I can't understand why the truth about pred damage has been such a surprise to MDs. Not a single side effect of pred is a surprise to someone who's studied basic biochemistry and physiology. I don't know any holistic doctors who are shocked by what has been "learned" about pred. They've been saying it for decades but have been universally ignored as lunatic fringe making "non-scientific" claims.

I just don't have much sympathy for medical docs who ignored science, thinking they were somehow above it. We have so many members whose doctors continue to think like this, dispensing pred like it's a magical fairy wand and not one of the most powerful and damaging drugs available.

JanW
03-21-2010, 04:18 AM
Well said, Sangye. I told him that almost everyone I 'know' from the internet who has this disease does pred & an immunosuppressat and he said, "It's hard for docs not to prescribe a drug that makes patients feel so much better so quickly, and at the same time they feel as though they have to get the WG inflammation under control asap, no matter the risk or side effects." Food for thought, particularly if you are WG who is minimally symptomatic like me and able/willing to be montiored very frequently for any red flags (even though we know wegs does silent damage, of course).

moyan
03-21-2010, 04:48 AM
I think this is frequent in all aspects of what we consume. 50 years ago we were at a study visit in Stockholm food something. We learned that reused cookingt oil is carcinogenic. Can you imagine the screaming fromn fast food owners if any law was adopted. Every now and then I read a little note in a papper , but...........

Jack
03-21-2010, 05:03 AM
Pred may be an evil little bugger, but it has kept most of us alive. As you know, I've suffered enough of its side effects to hate it. However, before the combination treatment of Steroids and Immuno-suppressants Wegs was almost always fatal. It is a terrible balance we have to strike between over medication and the potential consequences of a flare up. :(

elephant
03-21-2010, 05:06 AM
I know prednisone has done so much damage to my body, but at the same time I would be dead without it. My question is what medicine do you get if you are flaring? Since many of these meds including Cellcept take about 4-8 wks to kick in. That is why they had to put me on 60 mg of prednisone again last March.

Jack
03-21-2010, 05:12 AM
I was always put straight back onto Cyclophosphamide when I had a flare, but they tend to be more cautious with its use these days. Azathiaprine is a less toxic, though less aggressive alternative. Then of course there are all the new drugs that are coming along like Rituximab.

JanW
03-21-2010, 08:46 AM
I could certainly be considered to be flaring right now; my disease is not under control. I will be taking mtx, hoping to increase to a dose that is therapeutic, and that I can tolerate. If not, immuran or cellcept is the next course. On top of that, rtx may be added; my rheumy says new research is showing that the two together may be slightly more effective than rtx alone, because of the possibility that the body can make cells that cause you to reject the rtx (I may not have this exactly correct), and slightly immunosuppressing the body with another chemo drug would stop that. No plans for steroids at the moment. However, I am getting complete bloodwork and urinalysis every other week, and a physical exam (listening to lungs and heart, blood pressure, pulse, temperature, general looking over) every other week. Will see ENT monthly. Have had baseline tests of all functions (except sight) likely to be effected by WG. I am basically asymptomatic except for my saddle nose and my SS, which do not track disease function -- that these things happen is luck of the draw, not severity of disease. My sinus involvement is minimal, I have minimal joint pain, no fatigue, no lung, kidney or CNS involvement, no feeling unwell...my worst symptom by FAR is my swollen ankle, which, even if you connect it to WG hasn't gotten worse, and has in fact improved with time. Therefore, the risk to me to not starting immediately with high dose steroids seems really minimal -- the catastrophe thing that happened to me because of this disease has already been corrected surgically and will continue to be. The worse part is my nose, mainly because it is visible and makes me very self conscious. My doctor says that his SN patients have horrible things said to them by people -- only my hairdresser ever said anything to me unbidden, but it's tough to look in the mirror now -- and I was never one to avoid admiring myself!

My doc really wants to get right on top of this disease -- no question -- but he is taking a cautious approach, and compensating for it with lots of office visits, which I don't mind.

Jack
03-21-2010, 10:00 AM
I could certainly be considered to be flaring right now; my disease is not under control.
Not sure that I understand why you say that. You state that you have no symptoms other than the saddle nose and ankle problem, but these don't sound like the signs of active Wegener's. I don't think I ever achieved a condition much better than that and considered myself to be in remission. It may be that your doc thinks something similar or you would be on Prednisolone by now. The treatment for active Wegener's is a combination of Steroids and Immuno-suppressants, there is no alternative at the moment.

coffeelover
03-21-2010, 01:44 PM
If you read my NEW POST from today....I too discuss the prednisone and immunosuppressant...but am thankful for these drugs. Without them, I would be on a trach again and possbily worse.

JanW
03-21-2010, 11:51 PM
Back to what Jack said for a minute: I can't be considered in remission without ever having been treated medically. I have yet to be treated medically for this disease (only surgically). Neither surgeon nor rheumy consider me in remission (hence no consideration of surgery to correct my nose). I believe that people will mild disease symptoms can achieve spontaneous remission (and I've discussed that here before), I think that the reason that we know that WG will kill you if not treated is because those are the serious rapid onset cases that are reported. However, that's only my belief -- certainly doctors and probably most people on here wouldn't think so. So without ever having been treated medically for WG my physicians consider me in active flare, although that's not nearly as bad for me as it is for many of you. Their goal would be to have me completely asymptomatic -- no ankle problems, no join paints, no crusting, and they believe at this time, in my case, that can be achieved without steroids and with careful monitoring of chemo-type immunosuppressants.

Sangye
03-21-2010, 11:59 PM
It makes sense to me that you could achieve remission without pred, Jan. You don't have wildly active Wegs, which would definitely require it. It's always individual, and this is why we need Wegs specialists to make the call. Even last summer when my lungs were hemorrhaging (considered a severe flare) my doc didn't put me on high-dose pred. There's no absolute protocol for these drugs and there really shouldn't be.

JanW
03-22-2010, 12:57 AM
Those were exactly the words my doctor used, Sangye -- "there is absolutely no protocol for these drugs and if someone tries to tell you there is that isn't accurate." The difference between me and the one patient he has that has known WG from a biopsy that he has never treated medically -- she has one symptom (nosebleeds) and has never had positive c-ANCA or P3. I have positives on both, and have had tissue damage to nose and throat, although my biopsy didn't show WG. My doc believes that the challenge with me, should there be one, is finding a drug that is tolerable in regards to my body chemistry, and will still put the disease into a completely quiescent state. Pred is definitely not that for me. It did a ton of damage to my bones. And my nose collasped and throat closed up anyway!

Sangye
03-22-2010, 01:37 AM
Those were exactly the words my doctor used, Sangye !
Oh God, I'm channeling MDs.... I'll be driven out of my profession for sure! :D

JanW
03-22-2010, 03:30 AM
Ha! Sorry my friend! You've obviously been influenced by this disease!

Jack
03-22-2010, 03:38 AM
Jan, am I reading this right? Your doc has only one other Wegs patient, or do you see someone else as well?

JanW
03-22-2010, 04:28 AM
No, he has only one that he has never medicated (she has been his patient for 10 years). He has many current WG patients in various states of disease and remission. And my ENT one of the leading WG saddle nose and SS guys in the US. He sends people to Mayo or to my guy.

Jack
03-22-2010, 05:11 AM
Oh I see now. I was concerned that you might not be getting the right treatment, but as Sangye says, there are no rules with Wegener's so you are probably getting what is right for you. :)

JanW
03-22-2010, 05:13 AM
Yeah, plus my rheumy knows that the ENT is going to be asking me every month: what's the treatment plan? and he knows I'm going to the VF conference in Long Beach in the summer...lots of incentive to not look like a fool!