It is good to know...

[blm]

Just diagnosed with Wegener's in August. Had my 3rd infusion treatment this week. I've always been one of those who pushes through illness...keeps going...and then suddenly I couldn't anymore. I'm a social worker. I was fatigued, depressed, feeling like I wanted to quit. Then the heat came and my body just started burning up, pain from the top of my head to the soles of my feet. My pets (2 dogs, and 2 cats) were visibly concerned about me. As I reclined on my couch they covered me. I felt almost like they were trying to take the sick away.

The drop-in clinic prescribed antibiotics for a sinus and ear infection.
The ENT the clinic referred me to gave me a big steroid shot.
I kept saying I couldn't swallow. I couldn't eat. No one seemed concerned.
I kept trying to work at my job.
Finally my tongue swelled on one side and my speech was slurred. I texted my ENT. She said get to the ER.
They thought my chiropractor had "pinched a nerve".
They did a cat scan. They were about to release me from the ER when a radiologist said they found something in my lungs.
Then they gave me the cancer speech and said they were admitting me, put an IV in my arm and took me off to a room with the promise of a biopsy.
When I got to the room the hospitalist gave me another cancer speech and said I'd have a biopsy the next day.
The next day another hospitalist put on a mask and said it could be TB, but my biopsy had been delayed another day.
Thanks for scaring me. Thanks for being so sensitive to my feelings you grab a mask to protect yourself.
My daughter and I did not believe it was cancer or TB. Never a smoker. No asbestos exposure. No family history. No travel abroad.
And it wasn't.
Eight days later. Two in intensive care with round-the-clock nurses. Finally it was Wegener's.

Thanks to my Pulmonary Doc for testing for Wegener's.
Thanks to my Rheumatologist for setting me up with treatments.
Thanks to my employer who is so far very understanding.

It is good to know...to give it a name.

Feeling so much more like myself than I did just 4 weeks ago. I'm looking forward to getting back work in a few weeks after the infusion is finished.

It is good to know there are others fighting this fight. It's a new way to live for sure. But it's a way to live. And for that I'm grateful.

[Gab122]

Hi blm,

Welcome to this family and forum! I was just diagnosed Aug 1 myself - around the same time as you. I'm sorry you got so much misdiagnosis about cancer and tb! That must have been awful! I'm feeling much better too than i was 5 weeks ago! Are you on prednisone too? Or just getting the ritux infusions?
I'm glad you found us and like you I'm so grateful to know what I'm fighting and that there are meds to fight it with!

Wishing you improvement every day!

Gabrielle

[blm]

Thanks!

Yes I am on Prednisone. 60 mg now, 50 next week, then down by 10 each week till I get to 20. However, my first real visit with my rheumatologist today may change that. He seems to disagree with my pulmonary specialist and wants to move faster to avoid long term effects from the steroids.

Same to you Gabrielle.

Becky

[Gab122]

Since 8/1/16 i'm on pred 60 mg too Becky. 3rd rhuem appt is tomorrow. Hoping we will start taper. I heard it should be done really slowly. I imagined that was slower than one week. Maybe others will chime in their experience w/ tapering. How did your RA meeting go?
Gab

[Alysia]

Welcome to the family Becky and thanks for sharing your story. Thanks God they have found the right diagnosis. And thanks God for our pets (4 cats at home here :) ) The cancer dx was also in the air in my onset.

Gab, tapering down pred is individual. The slower the better. There are many variations. Also depends on how long you were at a certain doze. I would suggest tapering of 5 mg for week or two, always listening to the body to make sure its not too fast.

Becky, docs want us off pred faster then we can, too many times. Listen to your body. If the pred reduction is too fast, you might have some wg symptoms back, or headaches.

I must say that this is me, married forever to my dear 5mg pred. Maybe others are more courageous and easier with saying goodbye to their pred.

[Middlesista]

HI Becky - Glad you found the forums but sorry that you are here. I also had the TB and cancer potential diagnosis until they ran the ANCA and it was positive. Was diagnosed in Novemenber of last year. Had Rituxin infusions and prednisone and now also on MTX trying to get off Prednisone. Like Alyssa said - everyone is different in how they tolerate a taper. I want off the stuff as soon as possible - the long term complications are very problematic I think. I am down to 7.5mg after a few ups and downs. I feel that the doc that increased the prednisone was premature since I later learned that my Rituxin was still active. So we are tapering again and I am so hoping for a more positive response this time.

make sure they monitor your labs and keep an eye on your symptoms.

take care of you and ask any questions - as Gab mentioned, it usually does get better with treatment and time.

[blm]

I appreciate everyone's input on this. It's hard to know who to listen to when so many different specialists are involved in your care. Especially when you only get 3 - 5 minutes with your specialist. Overall the message I get from you all is to be an active member of your care team. My generation was pretty much taught to do as they were told and I sometimes forget that I have a voice.

Thanks for reminding me.

Thoughts and prayers to all of you.

Becky

[Alysia]

Listen to your body and learn how to be your own best dr.

[Girly3800]

Becky - you must be an active participant in your health care. If possible, I also recommend that you have someone you trust accompany you to all appointments and be versed in your symptoms and medications - another set of eyes is always useful. There has been more than one occasion over the past 4 1/2 years that I have gone toe to toe with a physician because that particular physician was not totally versed in his medications and dis not know how they all reacted together. Saved us some unneeded complications. At those times my husband was not able to physically or mentally "fight the fight". It also helps to have someone else observe you and note changes in symptoms or even outward appearances - sometimes those you don't even observe.

Aldena

[blm]

Aldena -

I know you are right. Unfortunately I do not have anyone to go with me. My daughter tries to keep up with me and always has good questions AFTER I tell her what the doc said, but she cannot attend with me always due to her work schedule. There are so many appointments right now. I tell each of my doctors that she may call with questions about my care. I think I will also start writing down her questions so that I can get an answer when I'm there.

I am getting overwhelmed with information right now. So much to read and learn. As well as dealing with the emotional and psychological side of not being as "healthy" as I once thought I was. I am absorbing everything I can from this forum and appreciate you sharing your knowledge with me.

Thanks. Really.

Becky

[MaxD]

Becky,

Johns Hopkins in Baltimore is one of the few Vasculitis specialty centers in the US and has a top-notch reputation. If you need, you could consult with them and/or have your local docs consult with them in deciding your treatment. All the best for your recovery - between fighting the disease and overcoming the side effects of prednisone will take time, so be kind to yourself. But you will recover. Good luck.

[Gab122]

Hi Becky, as a follow up, I had my RA appt Friday. Dr told me to go from 60 to 40 on the pred. Sat I called covering MGH (mass general hosp) Dr as I thought that sounded like

[Gab122]

Oops. Wasn't done.
I thought 60 to 40 seemed like a steep taper. He is doing a trial right now where they taper participants over 2 months instead of 6 months. He said the only symptoms I should watch for are the original presenting problems. He didn't think I'd have any problems with the taper itself because he said our bodies only produce 7.5 MG pred naturally. So 40 wouldn't be "too little". Today is day 2 of my taper to 40. I had slight headache but barely anything. I did have some chest pain but turns out that was indigestion or anxiety or something. (Per ER [emoji849][emoji1327]) my heart is great it turns out. So I can't say that 60-40 is going terribly. Hoping your weekend is going well!
Gab

[blm]

Gab -
Scary. Next Tuesday I go from 60 to 50. I will let you know if I experience anything. I see my rheumy again on 9/21. I'm sticking with what was on my discharge papers at this time. I'm a little concerned already because I'm starting to get some minor pain around my neck and shoulders again - while I'm still on 60. Not much, just a twinge -- trying not to freak. Think it might just be that I overdid it with out of town family visiting me this weekend. Not taking any pain meds at this point, but I have them available (celebrex) if I need it.
Glad ER gave you an okay on your heart. So hard to know when and when not to be worried. Play it safe! Thinking of you.

Becky:glare:

[Girly3800]

Becky - you can also check on drug interactions online. Just look for one drug name with the other. i.e. prednisone with celebrex. Even though there may be undesirable interactions your physician may feel the benefit outweighs the negatives but you should be aware of side effects.

Aldena

[Girly3800]

Becky - I know it isn't always possible to have someone with you all the time at appointments. I believe there are gaping holes in our health care system and having an advocacy mechanism in place is one of those holes. Documentation is also one of the keys for anyone with these kinds of diseases. There are some wonderful suggestions and discussion threads on this forum to manage all that documentation. It becomes volumes quickly. I was glad I had the foresight to start documenting when my husband became ill - made filing for his disability retirement easier (not easy-never is). Also helps when yet another medication is prescribed - we can do our own research and see if it has been taken before and the results. Also helps in keeping track of all the tests - trending if often as or more important that just one time results.

Aldena

[BookNut]

I do not have Wegeners....just an up and down respiratory problem that was once diagnosed as "mild wegeners". No one really seems to know what it is I have and why it came on suddenly at age 65. I have loads of experience with prednisone, so thought I would chime in here. There are so many theories in pred tapers. I was in a cycle of tapering down, going off, and being back on after two or three weeks. Have been on as much as 125 mg while in the hospital. My new pulmy put me on long term pred about a year ago. I tried tapering down to 7.5 several times, but get sick and have to go back up. I am now at 15 mg. My PCP has suggested a REALLY slow taper going forward. I plan to get to ten and stay there for 6 weeks. Then try 9 for six weeks, then 8 and stay there for a long time. After that, I am going to try six weeks alternating between 8 and 7, six more weeks alternating between 7 and 6 etc. Will see how it goes.....

[blm]

Thanks Jacquie -

Let us know how it goes. My ending dose at this point is projected to be 20 mg a day for 6 - 9 months. I don't know whether that'll stick or not. I start tapering tomorrow.
Going from 60 to 50.

See you on the path to health.

Becky

[Girly3800]

Becky - typically when my husband is tapering he drops from 60 to 40 to 20 with two weeks in between. From 20 on down it is excruciatingly slow - reducing by 2.5 every two weeks until he gets to ten. From 10 down it is a reduction of 1 every 3-4 weeks. At one point he made it to 4. At the moment he is at 7.5 and has been for 6 months or better - after 4 1/2 years on prednisone there doesn't appear to be much incentive to go lower. Once we figure out if the Rituxan is helping at all, may start downwards again. When we do it will be by .5 or 1 every couple of weeks.

Unfortunately most of his doctors all want to give him steroids when something goes wrong - from the pulmonologist to the eye surgeon. We have stopped that course of action except in the most extreme of circumstances due to the spinal compression fractures he has developed.

Best wishes with your taper.

Aldena

[annekat]

Since 8/1/16 i'm on pred 60 mg too Becky. 3rd rhuem appt is tomorrow. Hoping we will start taper. I heard it should be done really slowly. I imagined that was slower than one week. Maybe others will chime in their experience w/ tapering. How did your RA meeting go?
Gab Welcome to the forum, Becky. You have found the right place to be if you have to have WG. Especially with such short visits with specialists, you will get more info here than anywhere, and lots of friendship and support.

One thing to keep in mind about tapering pred: think of it in terms of percentages of drop in dose. If you are at 50mg., a drop to 40mg. is a 20% drop. Although that is significant, it becomes more extreme as you get into the lower doses, e.g. a drop from 20 to 10mg. is a 50% drop. By that time, you may have been on high dose pred (20mg. or more) for long enough, say two months or more, that your adrenals have shut down and that kind of a drop could be disastrous to your well-being. So yes, it is important to go slow, but you can go a little faster at the higher doses and lessen the chances of long term high-dose damage to your adrenals. I still say be conservative at the higher doses, too, though, when you are sicker and need to be watched very carefully. I would favor a drop from 60 to 50 over a drop from 60 to 40, and it might only have to be for a couple of weeks before going to 40. (I'm largely paraphrasing what I think I've read from a very smart member who used to be on here a lot, so anyone can correct me if I'm a little off.)

[blm]

Thanks Anne -

You are right. I'm getting lots more info here and some really great advice from folks who know. I started tapering this week, going from 60mg to 50mg. Next week I'm supposed to go from 50mg to 40mg and so on until I get to 20mg. I'll keep a close eye on what my body is telling me and be sure to share that info with my healthcare team. At this time I'm not sure who to tell first, but I'll figure that out too.

Thanks for the encouragement!

Becky

[annekat]

You're welcome. Everyone says something a little different, and that is OK. It's true that everyone is a little different in how we react to the meds and respond to treatment. The more you read on here, the more you'll get a feeling for it all and will be more confident in addressing concerns with your docs. I think you'll do OK with their current treatment plan, and that can always be revised later. It sounds like you were diagnosed relatively soon after having problems, even though there was a delay. For me it was 2.5 years, and even more for some others. This is a point in your favor and will lessen the risk of long term damage to organs and tissues. Good luck, and keep us posted!

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[blm]

Actually, people thought I was crazy, but I have been sick every July - August since 2012. I was looking at my medical records the other day and confirmed this to be true. My first visit to the ER was for crippling back pain in 2012. I've been seeing a chiropractor about twice a month since then for inflammation and got quite a bit of relief. I've seen folks for sinus infections that come and go. It just got so bad this time someone finally figured it out before it killed me.

So, it has been awhile coming. And it is indeed good to know.

[annekat]

Aha. So you may have had what we call "smoldering Wegs" for a few years. This is not uncommon and it may come and go. I had quite a time with ear and sinus infections and hearing loss that were attributed to allergies, which I do have, until my lungs became involved and I got a dx. But even before all that, there may have been signs of smoldering disease.

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[Gab122]

I was diagnosed with pneumonia 2x in 2015 before my ear symptoms started in May 2016 and dx of GPA in Aug 2016. I wonder if that was 'smoldering'?

[annekat]

I was diagnosed with pneumonia 2x in 2015 before my ear symptoms started in May 2016 and dx of GPA in Aug 2016. I wonder if that was 'smoldering'?
It could well have been, especially if pneumonia was uncharacteristic for you. My first big event was a giant antibiotic resistant ear infection in both ears, resulting in hearing loss, when I'd never had an ear infection in my life.

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[blm]

Smoldering WEGs. Sounds kind romantic, right? Not! I believe it though. I knew something was happening at the same time every year. It also happens to be a very busy time for me at work with lots of stress. I'm changing that for July 2017! I'm learning to delegate!

[annekat]

Stress is a big factor in our disease, and probably most others. That makes sense.

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[Gab122]

Anne, I'd never had any ear trouble either!! GPA is sneaky. :sneaky:

[Gab122]

Smoldering WEGs. Sounds kind romantic, right?

LOL - thanks for making me laugh. It does sound romantic when you call it that.... :laugh:

[annekat]

Anne, I'd never had any ear trouble either!! GPA is sneaky. :sneaky: Yes, and ENTs like mine should know by now that when it suddenly happens in a middle aged adult, WG should be suspected! I guess mine knows now. I have heard of many cases on this forum and on Facebook where a big, weird ear infection was the first major sign!

[blm]

Tapering down my prednisone is in process. I've dropped from 50 to 40 today. Feeling exhausted, muscle cramps, and sore throat. Anyone else have these kinds of things happen? I see my rheumy today so I'll ask him too, but I'm not sure what his experience with WEGS is. I know you all know more.

Just want to know if this is normal.

Thanks,
Becky

[BookNut]

I plan to read this thread thoroughly tonight. Becky, I do NOT have Wegs....but I have respiratory symptoms that are similar and were once thought to be Wegs. I stop into the forum now and again when i see posts that are relevant for me, especially if I think i can help. i am having a rough time getting off prednisone, so i will be looking at the various points of view. It struck me that going from 60 to 40 was a rather big drop....and Anne's point about percentage of tapering made sense to me. My latest effort got me to 8 mg, but when i got to 7 i had trouble. I was going down1 mg every three weeks. My PCP is suggesting that I go six weeks before dropping one mg and see if that works. I had to go back up to 15 recently, so it will be a very slow go. I am glad you posted this question. I hope you are/ will be feeling better! And you certainly have found the right place to ask questions. The "brain trust" here is amazing...not to mention the level of kindness, sympathy and concern. A true "band of brothers"are these Weggie Warriors!!

[annekat]

Tapering down my prednisone is in process. I've dropped from 50 to 40 today. Feeling exhausted, muscle cramps, and sore throat. Anyone else have these kinds of things happen? I see my rheumy today so I'll ask him too, but I'm not sure what his experience with WEGS is. I know you all know more.

Just want to know if this is normal.

Thanks,
Becky Based on my experience, it is likely the disease itself and not the pred drop that is making you feel so bad, though I'm not sure about the sore throat, because I don't remember that. You are still pretty early on in treatment, and it will take awhile for the immunosuppressant to work. The symptoms may be increasing in the meantime, although the pred should help with those. You are still at a pretty high dose of that. For the first month and a half, I could barely leave the house, except for small trips to to grocery store or doctors' appointments. Then I was able to go out and engage in public, income-producing activities, but still felt pretty woozy and shaky from the disease and the meds and really had to take it slow. Just remember that every case and every patient is a little different, and things will not be very predictable. When you feel yourself getting better, it will mean the meds are working and you are on the right track. I did not feel any real effect from pred tapering until I was down around 20-15mg, or even lower, but it could be different for you. Best of luck!

[blm]

Thanks Anne -

You said almost exactly what my Rheumy said today at my appointment. See...you guys know your stuff!

- Becky

[annekat]

Awesome!

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[Titus3:2]

Hello,and welcome blm.I saw your post on Mike's thread,and will comment here instead.You do need a good PCP,Mine is my favorite doctor.Rheumatology,Pulmonary,Etc,do not want to be bothered with anything else that might come up.Like high blood pressure.Try finding one in internal medicine.Unfortunately,your misdiagnosis is still all to common.And it is easy to become alienated from your doc's if you don't tip toe around their ego.Wish I had some good advice for you.Take care,Keith.

[Jaha]

Welcome to the best forum ever, you are where you need to be for information on GPA. I am wishing you all the best with getting a good medical team together and yes the PCP is a very important part of that team. All the best to you with your treatments and please keep us inform on your progress. Take care of yourself!