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JanieLynn
12-10-2010, 07:48 AM
I recently tapered off prednisone. My doctor gave me mobic for the joint pain, it worked from 5mg until 2mg. 2 days after i got to 2mg i have had increasing pain. Does anyone else have this problem and what do you take for it?

Sangye
12-10-2010, 02:03 PM
If you're having joint pain it's likely that the Wegs is not adequately controlled. What immunosuppressant are you on?

I went 2.5 yrs with joint pain that my docs said was something I'd have to live with. I knew it was active Wegs and recently we proved it.

JanW
12-11-2010, 03:27 AM
I agree with Sangye and would say that this is disease activity.

flana
12-11-2010, 07:37 AM
Ouch! I've been having this pain since quite a while as well. It was severe when it began a year ago (Dx'd a year and a half ago). and then went away. But the pains came back again about 6 mos ago. These are terible pains in the limbs, especially during the night.

My ANCA Serine Protease 3 levels have risen as well.

What do you suppose you make of that?

elephant
12-11-2010, 09:50 AM
Sounds like Wegeners is active.

JanW
12-11-2010, 10:32 AM
ANCA rising in conjunction with P3 rising pain, I would say your wegs is active. Haven't you been on ctx for about a year -- if that treatment was working for you, you should be getting better by now. You may need to try rituximab.

Sangye
12-11-2010, 12:29 PM
Yup, I agree.

flana
12-12-2010, 05:34 PM
So I saw my Rhumi last week and he said the same. But how do you know if the pain in the limbs is a Weg activity?

Sangye, how did you prove that in your case?

Sangye
12-13-2010, 01:08 AM
Joint pain is such a common symptom of active Wegs, that it should be assumed it's coming from Wegs unless it's proven otherwise. Raj, I'm really worried that you've been on ctx all this time and are having signs of active Wegs. I know I've voiced my concern about how long you've been on ctx before. But if it isn't even controlling the Wegs, it should be addressed.

My case.... When I was first treated with ctx/ pred, as soon as I tapered the pred below 20mg the original jt pain came back. Not as severe, but pretty bad. It continued during the 2.5 years on cellcept, even though my docs thought the Wegs was controlled most of that time. I knew it wasn't. Excuses were made about the joint pain--arthritis, being out of shape, you name it. But I knew it had the same quality as the original Wegs pain, which for me is a very distinctive pain. As a result of last year's severe flare, we used rituximab (2 month-long rounds) and the pain was pretty much gone for the first time in 4 years. It's creeping back lately, and I suspect I'll be needing more rtx soon.

I should note that the entire time I had joint pain my inflammatory markers were completely normal. This is why the docs told me it wasn't Wegs. Well for some of us, those markers are just not accurate.

JanW
12-13-2010, 03:22 AM
If nothing else, a doc could bump the pred to see if that makes a difference in the joint pain. If it does, then you know the pain is inflammatory. If the pain is inflammatory, assume it is WG regardless of markers.

My case, inflammatory markers were normal (ANCA and P3 abnormal but they could stay there, always), yet I was still having significant pain and mobility issues in my left ankle. Doctor decided to try to pred (medrol) pack on me to see if that made any difference in the pain (I am not on pred as part of my WG treatment). Within 24 hours I had significant lessening of the pain. Completely the pack, upped mtx by one tab, and saw pain reduce probably 90 percent within a month. And my rheumy didn't initially think that the ankle had anything to do with the WG at all.

Most WG experts will say that you can't go wrong assuming that anything that's wrong with you is based in WG.

flana
12-13-2010, 05:31 PM
Thanks for the concern Sangye and sharing your experience... you are such a good hearted person... Let me address this with my pri. Rheumi 2moro... in addition make sure to get the long standing appt. with Sharon by EOM.

Jan, thanks for sharing as well... When I was at Stanford, the rheumi did mention to up the pred to 10mg for a week and see if that makes any difference (I am also going to try this starting today). By medrol pack you mean you were pulsed by IV?

JanW
12-14-2010, 12:55 AM
Medrol pack is just standard step-down dosing for pred. You get a pack with maybe 8 pills on the first day, 7 on the second, etc., for about a week I think. Docs routinely give them for all kinds of issues -- not just AI diseases. Point was that when I took the first day's worth of pills (the largest dose), I could immediately feel the difference in my ankle, which was all it took to convince my doc that it truly was an inflammatory issue.

Sangye
12-14-2010, 01:19 AM
Raj, the highest dose in a Medrol pack is about 40 mg. Pulsed steroids means 3 IVs of 1,000mg pred. Big difference! They only use pulse steroids in emergency situations, where you have severe and life-threatening involvement. I had pulse steroids when I was first diagnosed, as my lungs were hemorrhaging quite severely.

drz
12-14-2010, 04:21 AM
Raj, the highest dose in a Medrol pack is about 40 mg. Pulsed steroids means 3 IVs of 1,000mg pred. Big difference! They only use pulse steroids in emergency situations, where you have severe and life-threatening involvement. I had pulse steroids when I was first diagnosed, as my lungs were hemorrhaging quite severely.

Did you get real high or manic from those high doses? It was a nice feeling but made me real grandiose, but as you said it saved my life.

Sangye
12-14-2010, 08:21 AM
I couldn't sleep at all on it-- not one wink. And my mind just raced and raced. Totally manic. No one told me pred would do that. I thought I was losing my mind due to the stress of the diagnosis, etc....

ScreaminMeanie
12-14-2010, 08:37 AM
I couldn't sleep at all on it-- not one wink. And my mind just raced and raced. Totally manic. No one told me pred would do that. I thought I was losing my mind due to the stress of the diagnosis, etc....

I'm laughing because it only took 60 mg/day of tablets to have that effect on me. Likewise, no one told me that would happen, and I totally did NOT remember that from my first time around. I didn't sleep at all for a week, then went back to the doc for a checkup. She gave me some Lunesta and Xanax, and I was finally able to sleep again.

drz
12-14-2010, 08:51 AM
I couldn't sleep at all on it-- not one wink. And my mind just raced and raced. Totally manic. No one told me pred would do that. I thought I was losing my mind due to the stress of the diagnosis, etc....

The first time I didn't know it happen till I recovered from it in about month. Most of the time I was happy drunk but there were some scary moments when i was convinced my life was in danger from delusion I had. The worst night was when they gave me some Ambien to help me sleep. That is wicked stuff and I didn't sleep a wink cause i knew the terrorists were going to kill me in the morning. Having a Pakistani aide sit with me all night didn't help either.

The last time I was in hospital and they started to ramp up the Solomedrol to those mega doses to treat a "flare up" i felt myself getting high and knew what was going to happen. I was relieved when they found other causes than Wegener's to explain my symptoms and could cut back the dosage. Like my rheumatologist told me on last visit, steroids are wicked drugs but without the large dosages I would be dead by now, so we take it and stay awake half the night and then nap half the day. What a life, right?

I wish I had half the millions I gave away when I was grandiose. The staff found me entertaining and very generous. They said it happens a lot to people on high dosages of steroids.

JanW
12-14-2010, 09:10 AM
I'm so bad that just on the medrol pack (what's the high first day dose, Sangye, 40 mg) my mind was racing -- to the point that I could feel myself talking really, really quickly. My son had red eyes (not even an eye infection or pink eye) and I got him in to the eye doc, convinced that he was going blind. It was crazy because I knew what I was doing yet couldn't stop myself at.all.

Funny, too because I'm really not particularly reactive to the chemo drugs or fosamax the way that some others here are.

Sangye
12-14-2010, 09:17 AM
Jan, that got me laughing. I can just picture it.

drz, Ambien is bad stuff all by itself. I took it twice when I was first on high dose pred and had terrible hallucinations. It was a new drug at the time. Now they warn people about hallucinations and "activity while you're asleep" like driving, eating, etc.... It really should be taken off the market.

For those who have never had it, it's impossible to describe what 1,000 mg IV solumedrol is like. It's the equivalent of 1,560 mg pred! I can't even believe I was on that kind of a dose.

drz
12-14-2010, 09:34 AM
Jan, that got me laughing. I can just picture it.

drz, Ambien is bad stuff all by itself. I took it twice when I was first on high dose pred and had terrible hallucinations. It was a new drug at the time. Now they warn people about hallucinations and "activity while you're asleep" like driving, eating, etc.... It really should be taken off the market.

For those who have never had it, it's impossible to describe what 1,000 mg IV solumedrol is like. It's the equivalent of 1,560 mg pred! I can't even believe I was on that kind of a dose.

The ironic thing is my family asked for Ambien thinking it would milder than the Seroquel they were going to give me. Next night I got the Seroquel with no trouble.

The 1000 mg of Solumedrol was something I hope we don't have to do again, but it did save our lives so I am thankful they had it available. Same for Rituxan and Cytoxan. It is dangerous stuff but without it we wouldn't be here.

me2
12-14-2010, 03:10 PM
Wow, I can relate to so much here. The 1000 mg solumedrol is a unique experience. I've had it (three day course) twice and I will say that in my limited experience it was very helpful and very effective at halting what seemed like a raging firestorm of WG.
Hey, I try and have as much fun with these pred experiences as I can now. We pay such a heavy price why not just try and enjoy it as much as possible. I could use a manic faze right now actually to catch up on house work. It looks like a healthy lazy person lives here.

flana
12-14-2010, 04:28 PM
Raj, the highest dose in a Medrol pack is about 40 mg. Pulsed steroids means 3 IVs of 1,000mg pred. Big difference! They only use pulse steroids in emergency situations, where you have severe and life-threatening involvement. I had pulse steroids when I was first diagnosed, as my lungs were hemorrhaging quite severely.

You might get surprised once again, but after I came back from the hospital, I was pulsed with solumedrol for about six months... I have been on the ride since then :)

... and every time I would get pulsed i would just sulk deep in depression for at least a couple days... as opposed to the other side of the spectrum...

Sangye
12-15-2010, 01:13 AM
Pulsed with solumedrol for 6 months??!! I think yours qualifies for the most mismanaged case I've ever heard of. Even the worst docs don't use pred like that. Those levels of pred will cause severe damage to your bones if used like that.

High dose pred can induce mania, depression or bipolar syndrome, so it doesn't surprise me that it caused depression for you. In many people the imbalances can continue even after they go off pred, and in some it becomes a permanent imbalance.

JanW
12-15-2010, 06:07 AM
Why would one even be pulsed like that for six months? Did you end up going to an infusion center? Isn't that reserved for extreme (life or death) situations?

Sangye
12-15-2010, 09:32 AM
Yes, it's only used for life or death situations. It's egregious that any physician would order it otherwise.

I was on pulse steroids for 3 days at dx, which is the maximum treatment. On the fourth day I was put on oral pred at 60 mg and tapered off over 8 months.

elephant
12-15-2010, 12:48 PM
At age 15 I have multiple pulses of prednisone IV for a couple months at least. It was a life/death situation at that time.

flana
12-21-2010, 01:49 PM
According to my rheumi... after every pulse (once every month) it would allow my rheumi to drop my oral intake by 5mg...

On the lighter side... my wife needs to know this "High dose pred can induce mania, depression or bipolar syndrome, so it doesn't surprise me that it caused depression for you. In many people the imbalances can continue even after they go off pred, and in some it becomes a permanent imbalance." :)

flana
12-21-2010, 01:51 PM
Oh and good news! I am seeing Dr. Sharon Chung this Thursday...

Sangye
12-21-2010, 03:26 PM
Thank goodness. She'll set your rheumy straight about the pred. Is he seriously doing 1,000 mg IV solumedrol once a month just to drop pred by 5mg a month?

Minneapolismark
12-22-2010, 10:06 AM
I take Vicodin if the pain becomes severe.

ScreaminMeanie
12-22-2010, 10:17 AM
Somebody correct me if I'm wrong, but I would think taking anything with acetominophin together with MTX would not be good for your liver.

Sangye
12-22-2010, 12:50 PM
That's true. A recent study showed that taking acetominophen on anything approaching a regular basis can damage the liver. It's a very hepatotoxic drug.

ScreaminMeanie
12-22-2010, 02:28 PM
IIRC, most fatalities linked to narcotic pain meds are not from OD'ing on the narcotic component, but from OD'ing on acetominophen and resulting liver failure.

pberggren1
12-22-2010, 04:23 PM
Isn't Vicoden fairly potent? I actually know nothing about it. I have only needed T1s and morphine in the past, along with a couple of rounds of whiskey with ibuprofen. I know better now not to take any pain meds unless the pain keeps me awake for long periods of time.

jola57
12-22-2010, 05:15 PM
I used to give my kids Tylenol when they had a fever then i traveled to Poland for a vacation and tried to get some at a pharmacy when one of my kids got sick. It was then that I found out that Tylenol is not allowed in Europe because it is hepatotoxic. I still use it once in a while for fever but for akes I take Advil.

Minneapolismark
12-22-2010, 05:26 PM
Swell. I can't have ibuprofin or advil. Aspirin is out. Now no tylenol. I think it is a hoot that the problem with Vicodin is the tylenol and not the narcotic.

flana
12-22-2010, 06:15 PM
Is he seriously doing 1,000 mg IV solumedrol once a month just to drop pred by 5mg a month? Yes he did do it for the 1st half of the 1st year. He said that is how he treated a lot of his Lupus patients. My Rheumy at Stanford too was surprised just as you are. But I was at the tail end when he came to know of it.

I am sure Dr. Sharon will set him straight not just on pred. but on ctx as well.

-raj

JanW
12-23-2010, 12:34 AM
Flana, dosing like that is just bizarre.

May I ask, does he have any concern about the toxicity of pred at all with even moderate, medium term use (says the 45 year old woman whose bones turned to chalk over maybe 5 or 6 medrol packs over a three year period).

I used to think that doctors were overreacting about pred (my daughter had to take it from about 5 to 8 for asthma), always telling us to not exceed the daily dose or stop in exactly 10 days. But it made everything better, I thought. No big deal to take a few mgs per day for a month or so. If you saw my bone scan, you would know why I have changed my mind on that!

Jack
12-23-2010, 01:52 AM
Multiple steroid side effects are my No1 problem and I would urge everyone to minimise their use. Used long term they can cripple you, but of course sometimes there is no alternative.

Minneapolismark
12-23-2010, 03:24 AM
With regard to Wegener's Pain, here is an article on the topic that includes an interview with Dr. Seo.

In summary,

1. A significant proportion of Wegener's patients have neurological involvement as a part of the progress of the disease.
2. Doctors who are not bona-fide Wegener's experts tend to ignore or overlook neurological involvement and just focus on the traditional effects to respiratory and kidneys.
3. The treatment protocol is geared at halting the progress of the disease but can't reverse the damage.
4. Neurological damage may include pain, numbness, foot drop or wrist drop, cold hands and feet, etc.

http://www.medconnect.com.au/tabid/84/s27/General-Medicine/ct1/c339606/CNS-Involvement-in-Wegener-s-Granulomatosis/Default.aspx

ScreaminMeanie
12-23-2010, 06:00 AM
That was a very reassuring article. I had foot drop, but it went away almost immediately after I started MTX. I am still bothered by pain, tingling, numbness, and hot and cold sensations in my feet. Overall, there seems to be a trend towards improvement, but it is VERY slow. I'm looking forward to week after next, when I go for a nerve study. Well, looking forward to hearing the results from that, anyway. ;)

drz
12-23-2010, 09:35 AM
With regard to Wegener's Pain, here is an article on the topic that includes an interview with Dr. Seo.

In summary,

1. A significant proportion of Wegener's patients have neurological involvement as a part of the progress of the disease.
2. Doctors who are not bona-fide Wegener's experts tend to ignore or overlook neurological involvement and just focus on the traditional effects to respiratory and kidneys.
3. The treatment protocol is geared at halting the progress of the disease but can't reverse the damage.
4. Neurological damage may include pain, numbness, foot drop or wrist drop, cold hands and feet, etc.

http://www.medconnect.com.au/tabid/84/s27/General-Medicine/ct1/c339606/CNS-Involvement-in-Wegener-s-Granulomatosis/Default.aspx

Nice article. thanks for sharing this!

Sangye
12-23-2010, 10:51 AM
Cool article, thanks Mark!

flana
12-23-2010, 02:16 PM
Neurological involvement concerns me.

jola57
12-23-2010, 05:17 PM
ScreaminMeanie wow I thought I was the only one in the bunch that had the droped foot. isn't that something? It took about 3 months before it got "better", now I can't move it from sided to side and its just plain buggered. It has been like this for over 3 and 1/2 years so I don't forsee it ever getting better. at least I can walk comfortably on it without it giving out.
Thank you Mark for the excellent article. How true about not taking care of the neurological side of weg's even though in my case it was the neurologist who said Vasculitis and sent me off for ANCA test. It has been 4 years and I have not been to see him even once and my rheumy or my family doc have not even suggested it. I will be doing that in the new year even thou I know there is nothing that can be done, at least I will hear it from someone who knows.

elephant
12-23-2010, 11:15 PM
I am getting sick and tired of some docs that just sit and nod their heads and then send them home with a prescription!