Preds not helping this time

[Lila]

Last week I took my sis to her 3 month follow up at JHU. She has had some difficult breathing. She was only on Methotrexate and Enbrel and was weened off Pred a few months back. She saw her ENT who put the camera down up her nose as took a picture of some 'tissue'. He said it could be from her trache or she could be having another flare. We went and saw the Rheumy right after and he put my sis back on 40 mg of Pred a day. She has been on it since Thursday and has had no improvement :(
The ENT said he could go in a 'dialate' her and if that doesn't work she may need to be fitted for a 'T-Tube' (a more permanent trache).
I'm not sure if I should send the doc a message, as I know he's on vacation. It's nearly impossible to speak to his receptionist. Should we give the Pred a couple more days to 'kick-in'?

[Sangye]

What did her rheumy say when discussing the options? Did he think the 40mg would be enough or that it might have to be raised? Did he talk about doing a stronger drug than mtx?

[Lila]

Yes, he said that if it's tissue build up from the trache or a Weg's flare that the Pred would help. He didn't mention anything about changing her mtx. You know it's impossible to call the Vasculitis center to speak with Kim, and I really don't want to email the doc while he's on vacation. Shouldn't the Pred have helped by now?

[Psyborg]

Is 40 enough to start trying to take down a flare? I kind of had the impression that it took more like 60 mg, though I'm a newbie here so I could be wrong.

[Sangye]

It might be a little early for the pred to be working well. When I had to go back on it for acute hearing loss in July, they tried a week at 40mg before raising it to 60mg.

It's not impossible to call Kim, you've just got to be patient with her. She's caught up in her own drama all the time, so you just have to play along to get what you need. If you expect her to be sympathetic, it won't happen. It'll frustrate you and her! Via Kim, I emailed Dr Seo a couple times during his vacation a few weeks ago. I was sad to do it, but I was in bad shape and no one else knew what to do.

I assume your sister sees Dr Kim as her ENT? When Dr Seo was on vacation, I asked Dr Kim to help me figure out what was going on. It was not in his area of expertise and he kept asking, "When is Dr Seo coming back?" LOL

On another note, why isn't your sister taking care of all this?

[Lila]

Yes Psyborg, I was thinking the same thing. I believe that's how much she was on when she first found out she had Weg's.

[Lila]

I think you right, the dose may prob need to be higher, or she may need to give it a couple more days.

Kim is nearly impossible to talk to Sangye. I have given her all the patience I can. Dr. Levine forgot to give my sis the scripts and when my sis called the next day and spoke with Kim, she refused to call it into the pharmacy. She said had already mailed it. However, my sis just got the script yesterday and it was postmarked for TWO days AFTER my sis talked to her!

I remember you were in the hospital a few months ago for hearing loss. How are you now?

She sees another ENT...I can't hink of his name but it start's with an 'M' and he's at the next building over. My sis doesn't have a computer/internet so that's why I'm asking. She's still stuck in the 'Ice Age"! lol

[Sangye]

Is 40 enough to start trying to take down a flare? I kind of had the impression that it took more like 60 mg, though I'm a newbie here so I could be wrong.
It depends. If you catch it early enough and the symptoms are not severe, it might be enough. For other situations, it's more important to switch to a stronger immunosuppressan right away, rather than use pred.

[Sangye]

I think you right, the dose may prob need to be higher, or she may need to give it a couple more days.

Kim is nearly impossible to talk to Sangye. I have given her all the patience I can. Dr. Levine forgot to give my sis the scripts and when my sis called the next day and spoke with Kim, she refused to call it into the pharmacy. She said had already mailed it. However, my sis just got the script yesterday and it was postmarked for TWO days AFTER my sis talked to her!

I remember you were in the hospital a few months ago for hearing loss. How are you now?

She sees another ENT...I can't hink of his name but it start's with an 'M' and he's at the next building over. My sis doesn't have a computer/internet so that's why I'm asking. She's still stuck in the 'Ice Age"! lol
You need to get Kim's email. She prefers to be contacted that way versus phone calls. She really hates phone calls. Just ask her for it. I got it by telling her I wish there was a way to contact her without bugging her via phone calls all the time..... It works great. I don't have Dr Seo's direct email, but I can email a note to her and she sends it on exactly as written to him, and then sends me his response. Also, it took me awhile to realize that she usually is just frustrated and angry, but not at me. When we go back and forth about something ("I need the scrip" "I already gave it to you" "No, you didn't" "I know I did...") I make a joke like "Don't throw your socks at me!" She always laughs and says she's just angry, but not at me.

Awhile back I got really frustrated with her. Then I realized she's my only way to connect there so I better figure out how to get what I need.

As far as your sister asking, I meant why isn't she contacting JHU?

[Lila]

I'll have to try to get the email address from Kim. When were were there last week Dr. Levine asked my sis "why didn't you call me to tell me you were having problems?". I guess she feels like she's a bother and so that's why he gave his email to me, and told me to email him with any questions or concerns. I don't know why she doesn't call there...but I don't mind doing it for her. Sometimes, dealing with Kim is enough stress for her.

I think we will give this a couple more days and if there's not much improvement I'll send him a message.
I hope your doing better..thanks so much for the advice :)

[me2]

Is she using Enbrel for WG or for something else? I thought Enbrel was found to be ineffective for the treatment of WG. I was on put on Enbrel when it was first available and then taken off of it, I thought based on a study. Maybe someone else knows the whole story here. I tried a quick search for a definative answer to my Enbrel question but didn't find one.
I have had dialation and it worked very well for me. My breathing was very restricted and no amount of pred will open up scar tissue. Lucky for me it happened quite slowly over a period of months. The bad new is that my ENT said that with the level of restriction I had anyone else would be in the Emergency Room. He said that because it closed slowly I was able to adapt to such a severe closure.
I hope your sis starts to feel better soon.

[JanW]

Hey, Lila: what's going on with your sister's trachea at this point? Does she still have a trach in or was there some kind of repair? I remember reading about her when I first started on this site. If it hasn't been repaired, can it be? (if you've already gone over this, just point me to the right thread.

I've never been told that any meds could help with my stenosis, but perhaps mine is in a different place that your sisters, or your sister's is much more severe than mine. I was down to 2 mm at my worst point, but with surgery I'm still at a 7 (fully open for me is about a 9).

[Lila]

Is she using Enbrel for WG or for something else? I thought Enbrel was found to be ineffective for the treatment of WG. I was on put on Enbrel when it was first available and then taken off of it, I thought based on a study. Maybe someone else knows the whole story here. I tried a quick search for a definative answer to my Enbrel question but didn't find one.
I have had dialation and it worked very well for me. My breathing was very restricted and no amount of pred will open up scar tissue. Lucky for me it happened quite slowly over a period of months. The bad new is that my ENT said that with the level of restriction I had anyone else would be in the Emergency Room. He said that because it closed slowly I was able to adapt to such a severe closure.
I hope your sis starts to feel better soon.

She's using the En

[Lila]

She's taking the Enbrel for her RA. She's been taking it for many years. She did have dialation 1 time about a year ago, and that's when the doc's discovered she has Weg's. I wasn't aware that Pred will not open up scar tissue! Somehow I thought that the Pred would open up the scar tissue (if that's what it is)...
Thank you

[Lila]

Hi Jan!

Right now she has the trache still. The doc's at JHU felt that she would be able to get it out by the end of this year. She's been off the Pred for a few months now and was doing GREAT! She had nose surgery just a couple months ago, and so far that is going well also. However, just a few weeks ago she had a hard time breathing. Her ENT said that he's not sure if the 'tissue' is from the trache or if it's a flare. He said that if she's still having difficulties she may need to be dialated or possibly be fitted for a T-tube? trache.
I'm not sure how many mm her trachea is. I don't know that has ever been discussed.
Thanks for your concern Jan...

[drz]

Is 40 enough to start trying to take down a flare? I kind of had the impression that it took more like 60 mg, though I'm a newbie here so I could be wrong.

Every case is different and people need to be evaluated for their symptoms, treatment history, past response etc to determine proper treatment. When I went back to hosptial for in patient treatment of flareup they started me on 125 mg every Solemedrol every six hours or 500 mg day. I was on 60 at time of admission. My history suggested very aggressive treatment was needed and appropriate for me.

[Lila]

the more I'm thinking and talking with different people, the more I feel like she needs a stronger immunosuppressant. I was with her earlier and her coughing is pretty bad, along with the breathing. I think we'll give it till Thurday and if no improvement, I will send a message to the doc.

[JanW]

What is she on now, Lila.

You're at JHU so obviously being treated by some of the best, but yeah, the pred's not going to take down scarring...maybe have it not get worse? (and I think that line of reasoning is even a little suspect). As my ENT says, with all due respect to my rheumy, it's the surgeon's job to deal with stenosis -- we just don't know enough about the effects of meds to really say that they make much of a difference at all.

So she had a dilation but not actual surgery to cut into the scar tissue? Sorry for all the questions -- SS is my little sub-area of WG expertise!

(and how great is that that she had her nose done -- no such luck for me, yet!)

[Lila]

Hi Jan!
Right now she is on Methotrexate, Pred, Enbrel and Plaquinel (I'm not sure about the spelling).
I'm definately sending an email to her doc 1st thing in the morning. I was with her today and the 40mgs is def not helping.
Yes, she went to Jefferson to get laser removal of scar tissue (so she thought). Within a few days she could hardly breathe and my brother rushed her back up there. The doc says he never did the laser, that he only dialated her. Anyway, when she was there they had to do an emergency tracheotomy on her. That was back in November. She is so depressed. I don't know what to say/do for her. I know she really had her hopes up of getting it out very soon.
Why aren't you able to get your nose done yet? I think I remember you saying a while back that you see Dr. Levobics...I read up on him and it seems that he is a good doc.
Take care...hope to hear from you soon!

[JanW]

How did she think she got a laser but she didn't get a laser. Her scar tissue must be very serious (I know I'm stating the obvious here) for them to do a laser, and in any case, I don't think I'd like to get that done by someone who is not experienced in WG (and I'm assuming the person at Jefferson in Philly is not). Laser used to be relatively standard (perhaps more overseas than here in the states) and pretty much caused more problems than it solved (horrible additional scarring, mainly), that required doing it again and again, and, you can't keep doing it because it does too much damage, so it becomes a catch-22.

Dr. Lebovics doesn't do noses until you are six months drug-free remission (bending the rules slightly, but certainly not for a fully drug maintained remission such as mine). The thought is that is that for a lot of people, while it's deforming (which mine certainly is), it's doesn't always affect the patient physically (which mine doesn't -- I have no hole in my septum or nasal problems in addition), and without a "true" (however you wish to term it) remission, you stand a great chance of complications and the nose collapsing completely again. I never knew (just never thought about it), that it could saddle again, but it can and does, if you have a bad flare, and there's not much you can do about that. Since it's also a somewhat painful procedure (he only uses your own tissue so a piece of your scalp, rib, elbow, etc.), and an overnight hospital stay plus, I guess the beat up look you have when you have your nose done, he'd prefer to do it once.

People get them done by plastic surgeons using filler and stuff like that, but he doesn't touch that stuff at all. Too risky with a vasculitis patient, he says, putting foreign things into the body.

[Sangye]

Lila, she should get the surgical report to know what was done,

[LisaMarie]

my trach specialust puts me on flovent inhaler for up to weeks when i look like i am flaring as it is a topical steroids that hits the actual tissue i can not use it too often though