Always a fight

[LisaMarie]

Ok Mayo has a plan I will be down to 10 mg a day by May 19th...sooner if I can tolerate their plan....10 mg by april 3rd...so wish me luck...Dr Specks asked me to deal with the side effects of withdrawal and hopefully my adrenals kick in...then back up to Mayo for more test..Lucky Me..
Hey has any one had their CRP increase from 8 - 21 in 1 week on 40 mg of pred ...just wondering?

[pberggren1]

I had my CRP jump from about 20 to 120 in a week or less, but I think I was on 10 or 20mg of Pred.

There are some of us on here that will never get off pred.

[Sangye]

Malin, not everyone can get off pred. Dr Seo said people with bad sinus involvement have the hardest time getting below 10mg and many cannot get off pred completely. Having said that, everyone should definitely try with careful supervision by a doc who REALLY knows both pred and Wegs. Dr Seo has taught me a lot about what to look for and how important it is to go extremely slowly. And I've also learned a lot about my body's signs for "You're going too fast" as well as "You're going too slow."

Dr Seo also stresses that if you have Wegs that is not completely under control, you should not continue tapering off pred when you get to a certain point. That point is different for us all. The past few months I've been stuck at 2.5 mg because the Wegs was starting to wake up. He told me not to lower it any further until the rtx is fully kicking in.

[coffeelover]

I agree with Sangye. Getting off pred has to be very gradual. I made the mistake of getting off, but it was only a matter of a few days and I was back up to 10 mgs. Now, I do not see an end in sight. I think I am one of those who will be on 10 or around there for a very long time.
LIsa

[freakyschizogirl]

Saw my Rheumy today, what a waste of time.
30 mins after my appointment time i get called in by one of his lackies, who says hows this going and points to his nose. I ask him why am i seeing him i thought i'd be seeing my Rheumy. He says no, now that i'm stable and having routine check ups i'll be seeing him from now on. I say sorry and no offence but i want to see the Consultant. He lets me back into the waiting room and i wait another 30 mins.
I get called in by my Rheumy. I tell him about the sinus pains i've been having but i'm pretty sure its sinusitis. He tells me that in my blood tests shows some signs of "grumbling" wegs activity but not a flare. I said i know i'm not flaring i think its sinusitis. He then asks to have my blood pressure taken, although my blood pressure is ALWAYS normal. He then listens to my lungs and presses my face. Following this i got a 20 min lecture about how Methotrexate is a drug that maintains remission and if that wasnt working more aggressive therapies will be introduced, like Cyclophosphamide. And talks about upping the pred back to 10mg, something i say i dont wanna do unless completely necessary.
After this i asked him would my nose still have collapsed if i had been under observation. And he back paddles for all his worth and basically blamed it on the ENT. Saying that if the ENT had seen any disease activity he should've sent me back to him. I said there wasnt any obvious disease activity until my nose perforated and collapsed.
I see the ENT in 2 weeks, i will be asking him the same questions. I guess i am still at the "why me?" phase. And i'm on a quest for answers.

Anways i walk outta there with a perscription in my hand to go back up to 10mg of pred and up the Methotrexate from 15mg to 17.5 then 20mg. I'm still pretty sure the sinus pains are being caused by sinusitis. And i'm relectuant to go back up on the pred if its unnecessary. What do you guys think? I value your opinions.

[Sangye]

I think if your labs are showing grumbling Wegs you have to go with that. I had that for 2.5 years and couldn't make any progress. I lost a lot of time and strength. A smoldering fire still burns the forest down, you know?

He is right about mtx. It isn't strong enough to get Wegs under control unless you have pretty mild involvement. Many times with grumbling Wegs you need to induce remission with ctx or rtx and then mtx will be strong enough to maintain control. Increasing the mtx dosage is good. If it's still not able to contain the Wegs, then you know you have to use something stronger.

I sense you are very frustrated with your rheumy. I can understand why, if you think he mistreated you and that resulted in a collapsed nose. It might be good to step back and assess whether you should stay with him or not. If you feel he has the skills to treat you, then you'll need to find a way to clean up your relationship with him. (I had to do that recently with Dr Seo, as we had gotten into a weird loop.) Sometimes our docs get frustrated with us when they give us their best advice and we give them a million reasons why they're wrong. LOL I've sure done that. Hang in there, Sam.

[malin]

I can't say much about MTX, I've pretty much always been on 20-25 mg a week but as for going back up on preds... I know you really don't want to but if you do and then your sinuses gets better, then I think that might be a sign Wegs is poking around in there again?

As for your test results and what your Rheumy said about them, you should ask him more specifically about them. My Rheumy always shows me my results on her computer and she shows me how they have gone up and down over the year as well. If your ANCA, CRP and ESR tests are high, that could very well indicate Wegs "rumbling" or even a flare.

I've always been on MTX but my Rheumy is always vary about it, she monitors me very very closely so that if something did show up that is Wegs related, I would be put on ctx or something similar straight away.

My Rheumy explained that MTX doesn't really provide enough "cover" if wegs would spread to other organs, like kidneys etc, but for sinus/ears it is ok.

[malin]

Haha just realised I started my message saying "I can't say much about MTX" and then about half my bloody message is about MTX anyway! LOL

[Sangye]

ROTFL

[freakyschizogirl]

Cant i start by saying you two crack me up!!

I sense you are very frustrated with your rheumy. I can understand why, if you think he mistreated you and that resulted in a collapsed nose. It might be good to step back and assess whether you should stay with him or not. If you feel he has the skills to treat you, then you'll need to find a way to clean up your relationship with him. (I had to do that recently with Dr Seo, as we had gotten into a weird loop.) Sometimes our docs get frustrated with us when they give us their best advice and we give them a million reasons why they're wrong. LOL I've sure done that. Hang in there, Sam.

Your sense are strong Obi Wan-Sangye. lol. I am debating whether or not to discharge myself, now that i'm with Addenbrookes. Funny how you can have a love-hate relationship with your doctor. I dont think he has the skills to treat Wegs, he deals with an awful lot of Arthritis patients and has seen several Wegs partients, i've no doubt he's a competent doctor, but just not the one for me.
I think its good to challenge your Doctors, just because they THINK they're right doesnt meant someone with a different perspective is wrong.

I cant say much at MTX either Malin. lol. My Rheumy is never very forthcoming about test results as he thinks i wont understand them, i had to ask him for my PR3 results at my last consultation and he looked shocked that i knew what it was.
I'd rather take the chance and see if its sinusitis, i've had it numerous times and thats what it feels like. I've had mucus on my chest for a while now and was getting concerned, but that would make sense if it was sinusitis. Rheumy listened to my chest today and couldnt hear anything sinister.
I see Addenbrooks in 2 weeks....i'll see what they suggest.