Pain Management?

[margaret]

Since his Dx, my brother has had excruciating pain in his joints that comes & goes but is attributed to his WG. He's on pred (60mg while on ritux), cytox failed for him and he's getting ritux, but still in lots of pain. He just texted me that in addition to his usual dilaudid, he needed to use all the options available to him to function this morning: 2 percocets; 160mg of oxycontin; 30mg of oxycodone; and 4mg of dilauded every 2hrs. And now he's barely able to function. He says the percocets helped the most, but he's still in pain.

My heart is breaking for him... I'm just wondering if there is anything else he can try that might help? Has anything different worked for any of you?

PS - at least hes still in the hospital and is being watched carefully - he does get his chest tube out today and gets his ritux today too.

[margaret]

I just wanted to add:

We're not very concerned about addiction at this point, because when it comes to being able to go home vs. be in the hospital, my brother is always eager to wean himself off the IV dilauded and other meds. Ironically, those are the meds that offer him the best relief.

[Sangye]

Wow, Margaret, that is just not okay. Until about 4 months pre-diagnosis, my only symptom of Wegs was severe joint pain for about 8 months. I really know that pain well. Something is wrong if he's needing that kind of pain medication with Wegs treatment. The Wegs drugs should be working much better than that. 60 mg pred is usually enough to stop the pain within a day! The pain sometimes comes back as you lower the dose down the road, but usually not until you get below 20 mg or so.

I know he began on ctx and pred. What was his initial pred dose? I started on 1,000 mg IV solumedrol for 3 days, then dropped to 60 mg and down from there over the course of about 8 mos. Sometimes that initial IV pred (or at least 80 mg) is necessary to put the fire out while the other drug kicks in and controls the Wegs over time.

Are they still consulting with JHU, CC and Mayo Rochester? Mayo AZ just does not have the experience to handle Wegs themselves. I know that from personal experience.

Also, I'm sure your parents as physicians are on top of this, but just in case, double check that he's not getting overdosed with acetaminophen (Tylenol), which is in drugs like percoset.

And yeah, becoming addicted is his least concern.

[Sangye]

I thought of something else. Wegs make one 23% more likely to develop blood clots, particularly when it's active. Don't let anyone tell you the pred will protect him (ie, because it's an anti-inflammatory). If he's in pain like that, his inflammation is off the chart. I got a ton of leg and lung clots while on the 1,000 mg pred, and I was actually ambulatory.

Since he's in so much pain, he's probably not getting up and moving around often. Your parents should request anti-thrombosis inflators (whatever they're called) on his feet. Tell them to look up the WECLOT study--famous study about the prevalence of clots in Weggies.

[margaret]

Sangye - we are all too aware about blood clots. Early on he had several PE's and has not 1, but 2, umbrella filters in his vena cava (the second due to clots forming above the first). He is being monitored for those (I believe hes got one in an arm right now) and is on heparin or something similar...

As for his steroid dosing - I know while he was here at the Mayo, he was on a gram of solumedrol (sp?)... his does of pred is so high right now because he's doing the ritux. He has one more infusion of ritux and then will follow up with Mayo afterwards. I'm not sure if they've been consulted on this pain thing since its always been something that comes and goes for him. I just didn't know how hard it was for him to manage until today.

The pain has always been an issue for him and was one of the clues (other than the worsening kidneys, etc) that the cytox treatment was failing him.

He did get the chest tube out today and will be getting some PT tomorrow. Hopefully moving about will help with the pain.

[Sangye]

I'm just so sad to hear this-- he's only 18 and going through all this!

I'm sorry to hear he's had clots. You know, I don't even usually mention that right away, but it just leapt in my head.

Worsening joint pain is my first sign of Wegs activity, too. Movement actually worsens or causes mine, but I do hope that isn't the case for him. It'll be good to get the chest tube out at least. I hear they're very painful while in.

Please emphasize the pain with his docs, not just to get better pain control. My doc at Mayo AZ always used to offer me something for my pain, but I knew the pain was due to the Wegs not being controlled. He just wouldn't listen. My JH doc knows severe pain means active Wegs.

[margaret]

I just spoke with my mother and I didn't realize that the first PEs my brother got were while he was on Lovenox... as soon as he got the WG Dx, he was put on the Lovenox because of the prevalence of clots in WG patients. Then he was on coumadin and had clots in his legs as well as hemmoraging in his lungs. He's on a coumadin now and still got a clot in his arm. Its a balancing act with him and blood thinners/anti-coagulants.

As far as the pain goes - the patients that fail on cytox/pred generally have more pain than those who do well on it. The pred will help about 80% of patients with pain - looks like he's one of the 20% that fail to respond to it. We're hoping the ritux treatment eventually helps..

Some Weggies are have more granulomas and others are more vasculitis... the vasculitis prone patients are more inflammatory and have a harder time with pain... thats my brother.

[Sangye]

I had the same thing-- massive lung hemorrhaging at the same time as uncountable leg and lung clots. It was terrifying. I didn't have Wegs docs (or even Mayo AZ) then-- just my local docs in Flagstaff. They didn't even know about the Wegs and clot risk.

Until they get his inflammation levels under control, they may have to keep him on Lovenox instead of coumadin, because there's no difficulty maintaining proper anticoagulation. I wound up being on Lovenox for 2.5 yrs--it ain't no picnic. I'm back on coumadin now.

I haven't heard the granuloma vs vasculitis thing. Wegs is a vasculitis, it just doesn't always cause large granulomas early on, and in some people the disease is controlled before granulomas have a chance to form. I'm like that-- my lungs are a mess, but didn't form any granulomas until about 1.5 yrs into it. Even so, I just have a small one.

At any rate, I just hope this guy gets better soon. Fall in Arizona is beautiful. He should be enjoying it, you know?

[margaret]

I guess some Weggies are more prone to granuloma end of the disease (ocular tumors, etc) and others are more prone to the vasculitis end of the disease... hard to explain.

I wish he was here in AZ - he's actually in TX, I'm the one here in AZ. And fall? Its still 100+ here in Phoenix... I'd love to be in Flag or somewhere up north about now!

[Sangye]

Oh, I thought he was still in Mayo hospital and that you were all out there.