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jeriorleans
09-08-2009, 11:07 AM
My son, 13 years old has recently been diagnose with Wegener's. After always being a very healthy child, in Feb, 2009 he got the flu. We went to the pediatrician and he was diagnosed as viral, with fluid behind the ears, it will go away. After two more visits to the pediatrician we went to the ENT because he was losing his hearing. The ENT put tubes in his office (didn't take him into surgery). AFter four or five more visits with the same complaint (he can't hear) we changed ENTs. In June we went back to the pediatrician with pain while urination. Urinalysis was done, no infection, trace of blood. In July the new ENT put him in surgery and found granulation in his ears and nose. He had chronic sinus pain since FEbruary. THey biopsied his ears and nose and found it suspicious for Wegener's. Positive for c-ANCA put very low 1/35. Sed rate of 28. We ended up at Childrens Hospital in New Orleans where the rheumatoligist confirmed the diagnosis and put him on 60 mg Predisone and 400 mg of Plaquenil. I cannot find any research whatsoever for using Plaquenil for treatment. It does not appear that his kidneys or lungs are involved. Lung x-ray clear and no granulation in his kidneys. Any insight is appreciated.

Doug
09-08-2009, 11:41 AM
My son, 13 years old has recently been diagnose with Wegener's. After always being a very healthy child, in Feb, 2009 he got the flu. We went to the pediatrician and he was diagnosed as viral, with fluid behind the ears, it will go away. After two more visits to the pediatrician we went to the ENT because he was losing his hearing. The ENT put tubes in his office (didn't take him into surgery). AFter four or five more visits with the same complaint (he can't hear) we changed ENTs. In June we went back to the pediatrician with pain while urination. Urinalysis was done, no infection, trace of blood. In July the new ENT put him in surgery and found granulation in his ears and nose. He had chronic sinus pain since FEbruary. THey biopsied his ears and nose and found it suspicious for Wegener's. Positive for c-ANCA put very low 1/35. Sed rate of 28. We ended up at Childrens Hospital in New Orleans where the rheumatoligist confirmed the diagnosis and put him on 60 mg Predisone
and 400 mg of Plaquenil. I cannot find any research whatsoever for using Plaquenil for treatment. It does not appear that his kidneys or lungs are involved. Lung x-ray clear and no granulation in his kidneys. Any insight is appreciated.

This is an odd one. The use of Prednisone with this one for juvenile rheumatoid arthritis apparently is typical, which makes me wonder if the rheumatologist actually is questioning the diagnosis in his/her mind, and trying what works for the JRA. In 12 weeks, I understand from reading the information on Plaquenil, the rheumatologist will evaluate your son's flexibility and pain. Makes no sense.

The problem with the scenario as I see it is that WG can take years to manifest itself or tear through your body like a tornado in a trailer court.
Where your son's symptoms seem not that severe, perhaps 8 in 100 people who develop WG die from it. It's good to keep that perspective, even though 92 in 100 survive, and return to reasonably to very active "new normal" lives.

Armor yourself with knowledge.

Start by contacting http://vasculitisfoundation.com/ (http://vasculitisfoundation.com/) the main support and vasculitis research-funding group in North America. They can recommend specialists in your area. "Your area" may be hundreds of miles away, but other members contacting Vasculitis Foundation have had positive results talking with the doctors listed in their website. They can guide you (then your son's doctors when you share what you learn) on the matter of the odd medication routine your son's on. It could be, too, that Cytoxan, the usual drug paired with Prednisone to bring WG into control is unsuitable for who's 13.

http://www.rxlist.com/cytoxan-drug.htm (http://www.rxlist.com/cytoxan-drug.htm)

The second website, above, is information on Cytoxan. Study it as it is possible your son will be put on this drug at some point, and this drug is pretty aggressive. You need to be prepared and informed, just in case.

The one below is on Methotrexate, another drug the doctors might use since Cytoxan generally is used now only for instances of severe WG (kidney involvement- but all cases of WG are serious, something that "severe" terminology tends to negate in many peoples' minds!).


http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html (http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html)


Here's one on Prednisone:

http://vasculitis.med.jhu.edu/treatments/prednisone.html (http://vasculitis.med.jhu.edu/treatments/prednisone.html)

You get a bonus with the Prednisone site because it is a Johns Hopkins website. JH is one of America's top centers for treatment and study of Vasculitis, and this attachment includes an excellent section on the forms of Vasculitis, including, of course, WG.

jeriorleans
09-08-2009, 11:46 AM
actually, he appeared to be "GOD LIKE" with my question of what else could it be beside Wegeners. He said "What else could it be"?" He goes back in 6 weeks but in the meantime I am going to try to get an appointment at John Hopkins
'

Sangye
09-08-2009, 11:48 AM
Welcome to the group!

In the past few weeks it seems like every few days we have a new member under 25. It's unbelievably sad.

I'm very glad your son got diagnosed quickly, though I bet it doesn't feel quickly to him or you. But if his lungs and kidneys are okay, then it's quickly.

Plaquenil is an anti-malarial drug. To be honest, I've never heard of it being used to treat Wegs once the diagnosis has been made. It's sometimes been used to treat an undiagnosed autoimmune disease. I have no idea if it's even effective in those cases.

You need to get him to a doctor who specializes in Wegs. Regular rheumys are just not skilled enough to handle it, and to understand the nuances of it. A member who goes by the screen name "Dumpy" lives in Baton Rouge, and a couple days ago posted that he'll be going to see a Wegs doc at UAB in a few weeks. I had suggested he contact the Vasculitis Foundation to find the closest specialist.

Due to the unpredictable nature of Wegs and its ability to go from not-so-bad to horrific almost overnight, it's important to get your son under the best care ASAP. It might spare him the more heavy-duty treatment, such as cytoxan, and certainly more extensive involvement/damage.

Also, the ANCA is famously unreliable. It correlates well with disease activity and response to treatment in very few people, but in the beginning of treatment, you can't tell if you're one of them. Most Wegs specialists don't rely on it at all after diagnosis, but use patient symptoms, lab findings and diagnostic test results to monitor the activity of the disease. Take-home message for you is that a low ANCA right now might mean his case is currently mild, or it might not be at all accurate.

Sangye
09-08-2009, 11:51 AM
Just saw your post about going to JHU. That's where I go and I'm thrilled to hear you're checking them out. The process of getting in takes a bit, so start now.

Doug
09-08-2009, 12:25 PM
Just saw your post about going to JHU. That's where I go and I'm thrilled to hear you're checking them out. The process of getting in takes a bit, so start now.

I can only add my "hosannahs" to that! Jeriorleans, you get Good Parent of the Month, maybe year, for jumping so fast into the correct lane to do what's best for your son! I award you 5 smilies, or would if we were allowed: :):):):) + 1 (p.s. please go back up to my first note: it took forever to get the links located and pasted in, and everyone continued to post around me!)

Sangye
09-08-2009, 12:31 PM
I'll add in my smilies,too. Way to go! :):):):)

jeriorleans
09-08-2009, 12:36 PM
I guess the hardest thing is he doesn't look sick at all anymore. He had several lesions purple in color on his ear and his face but the research I did on Wegener's mentions lesions on the lower extremities. His MRI of the brain was normal except for the ear problems. His hearing is mixed loss, mainly in the left ear. It happened within weeks. This doctor has treated Wegener's on three occassions but being that he is a pediatric rheumatologist, it hasn't shown up much. I am so frightened that they either misdiagnosed or that they are not treating it aggresively enough. I am getting much insight reading your posts however and appreciate all help. I have him on a low carb, low sugar, anti inflammatory food diet because I know how hard it can be on a teenager to gain so much weight. ANy insight on how not to blow up on Predisone?

Sangye
09-08-2009, 12:47 PM
I can hear everyone's sighs when they read that first line.... It's the land we all live in. Even my Wegs doc sighed when another JHU rheumy (a great doc, just not a Wegs doc) recently told me I looked "too healthy" to be having a flare. It's part of Wegs-- unless you're super anemic, you usually look pretty good. Very frustrating and hard for others to take you seriously.

The lesions on the face are unusual. I have no idea if that rules out Wegs, though.

Three Wegs patients is definitely insufficient experience. You want the docs who only see Wegs all day every day. That's what you'll get at JHU for sure. You're right to be concerned. A Wegs dx is nothing to take lightly, and you're right to be concerned about it treated aggressively enough.

Pred and wt gain...again, you must hear the sighs. It's devastating. All I can say is for him to try his best not to eat fattier foods. The brain goes wild with cravings. You're on the right track with such a diet.

Doug
09-08-2009, 12:51 PM
ANy insight on how not to blow up on Predisone?

That, Jeriorleans, is THE question! I'd hope a teenager's normal high energy needs to keep growing might stifle the normal response to this drug. That might be a good question to ask his pediatrician. Also, you get more "hosannahs" and smiley faces for the low carb, low sugar, anti-inflammatory diet you have him on. It's a good one for life, and certainly a good one for a weggie. I can't believe how together your response to his illness has been! :):):):) +1

Your comment about how well he looks is classic: we weggies don't always look sick, but we have this disease for life. Seventy-five percent of use go into remission, but most of us can expect a flare (re-occurrence of symptoms and an active case of WG) once or many times the rest of our lives.

jeriorleans
09-08-2009, 01:03 PM
Well your wrong about me having it all together. I actually feel quite lost and just want to climb in a corner and cry. But, alas, as a mom I can't do that. I can only try to get the best treatment possible and minimize his pain as much as I can. So hard when its your only child and he is such a good kid. So hard when this is the year he has been looking forward to. 13! But as you all have, I just have to remain strong, hope for the best and never lose faith.

Doug
09-08-2009, 01:20 PM
When you look back, you will realize how strong you were. Remember, as a caregiver, a mom, you are allowed all the emotions and fears you express. We speak of the "new normal" in this forum. It's that happy place where we are stable at some level, and hold that place for an extended period of time. In that time, people often think we don't look ill because we are thriving again, not fighting for life, ashen, plumped out with horrible drugs, dealing with IVs, hospitals, you name it. Enjoy those times with your son. He's going to have the normal growing up pains, the attitude (no doubt!), yet he still will have drugs to take, will have a level of maturity his peers may not achieve until they are in their late twenties or thirties! Someone else in this forum was described as a 60 year old woman in a 13 year old's body. Or maybe it was 16 year old's body. I'm trying to remember who it was. While your son didn't go through the ravaging effects some weggies have, he has had a pretty big burden put to him: hearing issues that aren't resolved. I lost hearing in my right ear to shingles, and understand how hearing loss isolates and changes your world. While I accept the loss and the limits medicine puts on ever improving hearing in that ear, surgically, because I am a weggie, I still wonder how many ENT doctors does it take to change a light bulb, because (of all specialists) I've had to work on getting over my sense that no number of ENT doctors is big enough to get the job done. But the sun comes up each day. There is lots of joy in living a life that came out of serious illness! And terrible things happen to us that aren't insurmountable, especially when we have the support of family and friends! (p.s. There are great ENT doctors out there, they just can't tell me what I want to hear. Also, great moms don't have to be Joan of Arc. You need to find your own support group, a task this forum is chartered to do! Weggies and their families, welcome here! For that matter, support group people who want to understand weggie issues better so they are better help for friends dealing with weggie issues are welcome, too.)

Sangye
09-09-2009, 12:51 AM
Doug said it perfectly! We know you must be struggling with the emotional aspects of this. We're just impressed that you're able to seek out better doctors, question the diagnosis and treatment, etc... at the same time! You'll look back on this time and wonder where and how you had the strength to get through it. So will your son.

Hang in there. Ask us for any help you need. Know that things will get better. :)

Dumpy
09-09-2009, 12:19 PM
Jeriorleans,

Sangye is really stong on the issue of getting to a WG Specialist and I wish I would have heard and listened to what she was saying a lot earlier. I have had 2 great doctors working with me but without being specalist they can only go so far with this BFF. I finally talked to my Docs about 2 weeks ago and they have been very helpful in calling the WG specialist in Birmingham and getting a referal so I can get to see the Specialist and the very earliest I could get a appointment was Oct. 7th.
If I can be of any help please let me know. I called the VF and I understand the closiest a WG Specialist to us (I live in Baton Rouge) is either Birmingham, Ala. are Jacksonville, Fla.
My heart goes out to your son and hopefully you can get this thing under control soon. It really seems to go extremely slow when you are begining the fight but don't be discouraged and always know that everyone here is behind you and always ready to help.

Sangye
09-09-2009, 12:44 PM
I really learned the hard way about how it is not to have a Wegs specialist. I didn't know any better--didn't know they existed, didn't have a support group or even regular internet access. I just relied on my local rheumy and pulmonologist to refer me if necessary. BIG mistake. With a Wegs specialist at least consulting with them, I would be in far better shape, and probably would have avoided a lot of the complications and damage. So I'm determined to make sure every Weggie knows about Wegs specialists. Then at least they can make an informed decision.

Dumpy
09-09-2009, 01:15 PM
Sangye some people like me are hard headed and as I thought everything was under control until it started flaring up in other places. My lungs,
sinuses and ears were the only things involved for 18 months. It seems now that the tear ducts in my eyes are being effected and I really can't get any answers if it is my BFF are something else. I really feel that it is the WG's because the tear ducts are swollen and throbing. This has been going on very mildly for awhile but for the last 2 months it has gotten worse. I'm sure if I were seeing a specialist there would have already been some answers. I have gone to the eye doctor but he just seems to be lost and has just about let me diagnois (sp.) myself.
Thanks for the ragging.

Sangye
09-10-2009, 12:45 AM
Sangye some people like me are hard headed
My head has been compared to concrete, so I get what you're saying....:o


Thanks for the ragging.You betcha. Thanks for not throwing your socks at me. I can't duck very fast these days... :D

Doug
09-10-2009, 05:18 AM
Sangye some people like me are hard headed and as I thought everything was under control until it started flaring up in other places. My lungs,
sinuses and ears were the only things involved for 18 months. It seems now that the tear ducts in my eyes are being effected and I really can't get any answers if it is my BFF are something else. I really feel that it is the WG's because the tear ducts are swollen and throbing. This has been going on very mildly for awhile but for the last 2 months it has gotten worse. I'm sure if I were seeing a specialist there would have already been some answers. I have gone to the eye doctor but he just seems to be lost and has just about let me diagnois (sp.) myself.
Thanks for the ragging.

Phil Berggquist had the same problem, if you recall. Unfortunately, he doesn't have internet at home anymore, and has to rely on his library for internet use. Yes, WG can affect the tear ducts and anything else. My doctor told me he starts from WG and works out from there, since I am a weggie, when dealing with issues I have. He establishes first it isn't WG before he looks at other possibilities, I guess, is a clearer way of writing it.

Sangye
09-10-2009, 05:42 AM
Whenever I see my Wegs doc at JHU, I bring a list of all my current symptoms. He takes the list, and goes down it one by one out loud, all at once. It's so funny, because he says, "Mine, mine, mine, not mine--ENT, not mine--hematology, mine, mine, I have no idea, mine, not mine--neurology, etc...." All my specialists regard everything as "Wegs first" then rule that out. It has to be that way with a disease that is so far-reaching and has such unclear symptoms.

I think that's the main way non-Wegs docs make mistakes. They view everything as non-Wegs unless it's a textbook Wegs symptom-- eg, hemorrhaging lungs.

Jack
09-10-2009, 06:30 AM
One of the things I suffer from is Bronchiectasis which is often caused by a severe lung infection. This sounds very much like something that could be the result of Wegener's, but the Specialists say that it is not. Personaly, I think that it probably is although there are very few links that I can find. Perhaps I'm just very unlucky and have two severe illnesses.

I'm not sure that this post is relevant to the thread. I'm tired out and need to go to bed! :rolleyes:

Doug
09-10-2009, 08:02 AM
WG has weakened your immune system, making you more vulnerable to infections. You assert an infection is related to your WG. Your comment Jack, to me, seems dead on. You have taken position A. So have your doctors, but they think their position is B. They can't see that you are stating the same thing as they, just from a different shade of wording. If it didn't cause the infection, it sure contributed to the body's failure to fight it off.

If I thought you meant WG caused the infection, then I'd call you Hitler and trample your garden, the usual American response to things we don't agree with! Ha!

Sangye
09-10-2009, 08:17 AM
You crack me up, Doug. :D

Jack, I hope you feel better soon. I can tell you're still not up to speed. :)

Doug
09-10-2009, 08:23 AM
Jack, I hope you feel better soon. I can tell you're still not up to speed. :)

Me too, Jack. I still think there's more to what you were saying than what I got.

I'll try again: An effect of having WG or a certain infection is Bronchiectasis (a chronic dialation of bronchi or bronchioles, according to my dictionary. Whew, Jack!). You claim WG is the causal agent, because it is the root of all evil once you get it; your doctors claim it was the infection, perhaps because they detected the infectious agent in your (spit/urine/blood/?). Back to the earlier entry. The infectious agent "shot the bullet", but WG "made and handed over the gun".

(Go wake up Jack, somebody! Help!)

jola57
09-10-2009, 08:34 AM
Sorry to hear your 13 year old son being aflicted with this BFF. Plaquenil was given to me at the very beginning before Wegs diagnosis, they thought I had polymyalgia rheumatica. Once Wegs was diagnosed I was immediately taken of plaquenil and put on a higher dose of prednisone and cylophosphamide. The best news is that he seems to have only limited involvement (although it may not seem that way to you at this time) seeing a good specialist on the outset is important. I lost hearing partially last year and just muddle thru, I adjusted and function quite normally without hearing aids for now.

Jack
09-10-2009, 01:34 PM
(Go wake up Jack, somebody! Help!)
No need for the wake up call. :(

It is now 4:30 in the morning and I've been up since 1:00 with ear ache due to the fluid build up in my left ear. I suspect that this could be an effect of reducing my steroids. Perhaps I'll try a one off dose of 15mg. I've already tried the usual antibiotics.

Wegener's is such fun! :rolleyes:

Doug
09-10-2009, 02:12 PM
Ow! I went through that with shingles and post shingles: This was the start of my disenchantment with the ENT breed as months went by without any reasonable result (i.e. reduction of pressure). I hope you get relief soon as it does mess up sleep and cause stress :mad:

No answer needed now for ear ache because of fluid build-up behind the ear drum. The ear concerned (totally deaf) is good for nothing but the pirate hoop earring necessary to offset the herpes zoster lip scarring that necessitates a parrot permanently attached to the opposite shoulder to give me the appropriate gestaltlichkeit (no doubt a coined word, so I shall rush to the copyright office) to pull off the look. Of a pirate, that is. Yar! Arrgh! And ahoy me maties! :rolleyes:

That is how I turn that bushel of lemons into lemonaide:)

Sangye
09-11-2009, 12:44 AM
Aw, Jack... I know you must be completely frustrated. It's that feel-a-little-hopeful then get-smacked-down thing that can happen with Wegs. That's the land I've lived in, too, so I sure understand. :(

What pred dose were you down to? I know you slowed your descent recently. When you get it stable again, can you drop it by 0.5 mg or even 0.25 mg? Doctors might laugh (no, they WILL laugh) but your adrenals won't. You might need to take months just to drop from 6 mg to 4.

Jack
09-11-2009, 01:59 AM
Thanks for all your thoughts folks! :)

I'm sticking at 8mg at the moment (reduced from my normal 10) and think that I have slightly more strength in my legs. I can get up stairs with the help of only one hand now instead of two. However, I think the ear thing has got worse. It used to be just a feeling of pressure, but it is often painful now. I'll stick with it for a while longer to see if it settles down and try not to resort to the increased pred again. :rolleyes:

Sangye
09-11-2009, 02:37 AM
That's good to hear (no pun intended). You know all too well that often things calm down on their own once you adapt to a new dosage or drug, etc.... Wegs likes to be the one making changes, you know? It can't stand it when WE do it. :D

Doug
09-11-2009, 01:04 PM
Take care on the stairs. It's good to hear you are able to go up with one hand helping now, though! If you aren't the poster boy for Wegener's granulomatosis, I don't know who is. I've come to respect you a lot for how you handle an astonishing load of vicissitudes, among which are my smart remarks! Ha! Jack, we need a t-shirt with your avatar photo on it!:)

Jack
09-11-2009, 04:57 PM
I do seem to have experienced most of the spectrum over the years, but there are still people on here with things that I have not had. I'm not sure that I want to collect the full set! :eek:

As for your remarks - I try to make allowances for people stuck out in the colonies. :rolleyes:

Sangye
09-12-2009, 12:12 AM
I agree that with Wegs, it's better to collect one piece at a time. Sure, getting a full set all at once might be less expensive-- one giant hospital stay vs many shorter ones-- but it's nice to spend a little time with each new piece and really enjoy it. The great thing about Wegs is that you can add pieces in any order or combination.

Being an experienced collector, Jack has also become skilled at trading pieces of his collection. He once made an excellent kidney trade and got a great deal. Really enhanced his collection. :)

Jack
09-12-2009, 01:17 AM
The Kidney deal was the best ever! :)

Before that, I was on the type of dialysis called CAPD (you might like to Google it). That was good because it interfered less with my daily life and I was able to continue to work. However, I was not exactly thriving on it. I was becoming weaker, feeling ill much of the time and would sometimes faint. :eek:
Not too sure how much longer I had left if I had to continue.

The usual wait for cadaver transplant in this country is between 2 and 3 years if you are Caucasian, but much longer if you are Black or Asian. I had to wait for 18 months so consider myself lucky.

There is a long standing debate here over the transplant system. Currently doctors need to obtain the permission from next-of-kin, but I think that it is often difficult for them to raise the subject. An alternative would be an opt out system that would assume agreement unless an objection was made.

What are the rules for cadaver transplants in other countries?

Sangye
09-12-2009, 01:29 AM
In the US, you can put a sticker on your driver's license that says you want to donate your organs in the event of your death. You can specify particular organs, tissues or all. Otherwise, unless someone has indicated it in a personal will, it comes down to the same difficult conversation from doctors.

Jack
09-12-2009, 01:52 AM
We have a similar system for registering your personal wishes, but it cannot be used to give the go ahead to donate. This still requires next of kin consent no matter what your wishes were. I think that the only reason for registering is that it puts pressure on the doctor to ask the question.

I doubt that anyone would want any bits of me once I've finished with them, but they are welcome if they can find anything still working!

Doug
09-12-2009, 05:07 AM
As for your remarks - I try to make allowances for people stuck out in the colonies. :rolleyes:

You know what we say here: "Give them an inch, and they'll take a mile." But that's only because we resist metrification to any significant degree because of some idiot notion that the rest of the world should follow out lead. What?!:rolleyes::confused:;)

Doug
09-12-2009, 05:22 AM
As for transplants, best bet is a live volunteer donor. Availability isn't much better than cadaver donors, I'm sure, and there never are enough.

That business of growing parts from stem cells strikes me as a great avenue for the future, if it can bring about organs created from stem cells created from cells taken from the recipient. I am am bit concerned that there will need to be another way of growing them other than on the backs of mice, in the way an ear has been, say!

Gad! I think donors by a check mark on their driver's license is a great idea except for these things: 1. Who determines suitability for donorship? No one. 2. How are people with HIV, AIDS, Hepatitis in its various stripes, etc. weeded out of the donor organ system? They aren't.

I'd think controls at least as stringent for blood donors would apply to organ donors.

jola57
09-14-2009, 05:50 PM
I have heard of people advertising for kidneys on eBay and craigslist. As long as no money changes hands it seems to be Ok. I would assume that all the necessary test would be done. When I worked in transplants eons ago, we only did the donor and receipient typing, we didn't worry about HIV, in those days we didn't even use gloves to process the blood. How the world has changed.

Jack
11-10-2009, 03:34 AM
An update on my pred reduction regime -

Well, I've reduced from 10mg to 7mg over the past 3 months or so and have now taken stock of the effects.
My walking and leg strength has improved by a fraction, but on the down side my hearing and eustation tube problems are worse and my cough is also worse. On top of that, I had a bit of crusting in my nose this morning and a nose bleed! This is the first time for many years and used to always be my indicator of Wegener's activity so I'm running scared and have reverted to 10mg. I feel safer at this level in spite of the problems it brings.

Sangye
11-10-2009, 03:55 AM
I'm sorry that you had to go back up, but glad you know how to catch the early signs and prevent a flare.

After losing a month in the pool, I just got back in last week. I felt so much better moving again. Don't know if I can get in this week--it's a busy one, and I need to conserve my strength to get through it.

I hope you can find a way to get stronger, Jack. There must be something that would work for you.

Doug
11-10-2009, 06:51 AM
The frustrations of seeing or experiencing old symptoms, wondering if there's been a change one should take to a doctor, is one we all experience. I hope you get yours in control with you Prednisone change, Jack. Bleeding always is more alarming than most symptoms. To me anyway.:(

elephant
11-10-2009, 09:18 AM
The Rheum has me reducing me prednisone 1mg every two weeks. I am down to 7mg and have felt more sinus pressure on the left (maxillary) and left Eustachian tube clogging up too. It's frustrating because this has been a issue for the last 18 months ( infection? WG? reduction in pred? virus?). So I been thinking mabey I need to increase my pred to 10 mg. I see a really good ENT in Charleston, SC on Friday. He will take a look and mabey give me some insight. I had four maxillary surgeries in the last 18 months. I guess this disease keeps us on our toes.:eek:

Sangye
11-10-2009, 01:55 PM
Elephant, many people find that reducing the pred on alternating days helps them taper below 10 mg without triggering a flare. Please check with your doc, of course.

So let's say you're at 10 mg and want to start lowering it. Instead of dropping it to 9 mg, you'd take 10mg one day and 9mg the next, alternating 10-9-10-9, etc.... Do that for a week or two, then stay at 9mg daily for a week or two. (You may have to stay at one level for longer or you may have to drop it by 0.5 mg.)

Please don't do this yourself and let your doc know what you're doing. Also, pay attention to your symptoms. If your reliable indicators start popping up, tell your doctor right away.

Jack
11-10-2009, 05:58 PM
elephant - see my previous post. I can't get below 10mg without experiencing problems so that is the level I'm sticking with.

elephant
11-10-2009, 11:54 PM
Thanks Sangye and Jack for the input. Jack did going up on the prednisone 10 mg stop the full feeling in the ear? I was told by my rheumy at Cleveland clinic that the sinuses don't like it when we drop the prednisone below 5mg. The ENT will take a look with his scope ( up my nose and max) and hopefully the maxillary has stayed open. I will call my Rheumy the one in town Monday and let her know about my visit with the ENT. :D

Jack
11-11-2009, 12:00 AM
Not sure of the effect yet, it's only been a couple of days. I live in hope. :)

Doug
11-11-2009, 02:31 AM
Best wishes to you all.

coffeelover
11-11-2009, 02:40 PM
Jack I am wishing you well. That crusting of the nose is something I have never been rid of.
Lisa