Hello from Shawny

I am in the process of being “diagnosed” and feel very confused. It started in February with what my PC thought was an upper respiratory infection. After antibiotics, prednisone, x-rays and a CT scan I was referred to a pulmonologist. She did a lot more bloodwork and a second CT scan. I had enlarged lymph nodes in my lungs that had grown. Needle biopsy showed no lymphoma but no lung tissue taken at the time. More bloodwork shows elevated protein marker but ANCA negative. Same with repeated bloodwork. My pulmonologist thought it might be Wegeners. I went to a rheumatologist who said she agrees it sounds like Wegeners. Her plan was to start high prednisone treatment instead of an invasive lung biopsy. My pulmonologist agreed. I’m not sure what to do. They aren’t sure what I have, so is it smart to just throw high doses of prednisone at it? I have bipolar disorder with severe anxiety and am very concerned about the emotional effects of the prednisone as well as the possible drug interactions with all of the psychotropic meds. I feel so much less alone since finding this forum.

Hey Shawny! Welcome to club Weg.

The Pred is a good choice as it will help with inflammatory disease in general, not just specifically the WG. Others have been ANCA negative at diagnosis as well. Both docs will have reviewed your current meds and any interactions but I reckon it would do you good to ask directly "How will Prednisone affect my other medications?". That ensures they've thought about it and ticks a box for you so you don't have to stress as much about it.

The Pred is both a blessing and a curse. It's helped pretty much everyone and it'll more than likely help you too - with the aid of ongoing blood tests to track progress. If it's high dose then I'm assuming the intent is to hit the inflammation with a sledgehammer then gradually taper you off. Did they talk about immunosuppressants as well? These are normally coupled with Pred in the initial period after diagnosis. The issue with high-dose pred is that it may turn you into a food vacuum. It can make you really ... really hungry. Consequently there could be some weight gain at least while you're on it. Someone will hopefully chime in about their experiences on Pred and how they managed food. I was hopeless! :)

The anxiety angle ads a complication but staying as informed as you can will help as will this forum and your docs for any questions you have. I don't have experience with the BiPolar issue but staying on those meds will be a big thing. Do you have a psychologist/psychiatrist as well? If not , it may help at least in the initial stages. At the very least check your head stuff with your GP on a regular basis. Having BiPolar and Anxiety is a big thing and you're managing it every day. You'll do the same with this. You'll rock at it.

Again, welcome and ask any questions you like!

Cheers
Andrew

Thank you Andrew! I needed that encouragement. This is really scary and is happening so quickly that I feel totally out of control. The thought that I’ll rock this brings a smile:)

Hi Shawny, good place to be with what you're going thru. Please ask any & all questions you have as there are years of experience on this blog. I have GAD (general anxiety) and take meds for it. Lexapro with a Xanax back up are my tools...they haven't interfered with the WG drugs the least bit. Altho, pred made me a bit argumentative over the stupidest things for a while! I did the therapy bit for the anxiety...nice efforts, but mostly it's a lack of serotonin, so therapy only goes so far in 'handling' the panic...the rest is chemical. One anecdote I've found is that the panic acts as a warning to my body that I'm not feeling well...it's been very consistent with my flares...sheesh. Hope the best for you, follow docs' orders, and stay on your regimen no matter what...you'll start to feel better soon.

High doses of pred will most likely affect your emotions and may require some adjustments to your other meds to compensate for this influence but good follow up care should help you navigate this OK. Untreated Wegs (GPA) would have a much worse effect upon you.

Food could be a big issue; I’ve been diagnosed with a binge eating disorder and am already terribly overweight. Where do I go on this forum for specific questions and issues?

Pretty much can go anywhere you like but here is a good start: https://www.wegeners-granulomatosis....eneral-WG-Chat

Hi, Shawny,
I just jumped over here from the other thread you started about the situation with your marriage. That is a subject in itself, and I can only say that it's unfortunate that you won't get much family support in dealing with this disease. Maybe you will feel less anxious when things have been brought into the open with your daughters and possibly others such as siblings. I wish I could say more to help with that.

As far as WG goes, you have been given a wealth of good input from those above. I hope you can get a definitive answer soon about a diagnosis. I understand avoiding a lung biopsy. Since you mentioned upper respiratory issues, the docs might consider a nasal biopsy, or they might have rejected it due to low reliability, but in my case it worked and I got my dx that way. It is much less invasive than a lung biopsy and was done for me on short notice right in my ENT's examination chair. And I also had negative anca, or only negligibly positive, at dx, so Andrew is right about that. The pred concerns are real in regard to food. I just made sure to only have rice and veggies around, and maybe some fish or lean meat, knowing that just about anything would taste good under pred's influence. If you have WG, once they start you on an immunosuppressant, they'll probably start tapering the pred fairly soon. I'm still on a low dose after 8 years, because the longer you've been on 20mg or more per day, the harder it is to stop, which may result in a flare. This is because your adrenals have gotten used to not having to produce cortisol, which you need to survive, because pred is doing it in their place. So they may have considerable trouble coming back on board. But I get the feeling that docs today are more savvy about this and are making sure, if possible, to get people off of it soon enough that they won't be on it for years. Every case is a little different, though.

I certainly hope you will keep us updated about your possible dx and how it is affecting your life. We all know more than maybe even our doctors about dealing with WG on a day to day basis. Best wishes and best of luck to you.

Anne




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Thanks for sharing your story, Shawni and I hope you get the right dx and be back well soon. I am going through similar period of unknown-ness and it feels important to get as many tests done to get to the bottom of it. Good luck and keep updating!

Welcome Shawny, I do totally understand that feeling as well. I am almost 2 years on from my diagnosis and I remember it being quite a trip. I imagine it being more difficult with the involvement of anxiety, but just trust your body, do what you feel is best, and keep up on your meds. I was on Prednisone for a while and it helped quite a bit. I drank a *ton* of water (about 2 gallons a day) while on it and it helped mitigate my food consumption.

I've heard Pred described as the devil's tic tacs. I couldn't agree more. They will certainly mess with your emotions, and as Andrew stated, the weight gain is unavoidable (I put on 35 pounds from my weight before being sick). They make me very paranoid, even at the 5mg I am currently taking. However, I can function and live my life so it is just a side effect I've learned to deal with.

A word about prednisone: People's reactions to it seem to vary widely. Some can't tolerate it, period. Others actually enjoy it, as it gives them more energy for various household projects, etc., and they like how it can quickly clear up symptoms.
I know that pred, as a steroid, is NOT the same as the anabolic steroids athletes use to improve performance. I just searched and found that kind is actually synthetic testosterone! We don't want or need that! Prednisone is a corticosteroid, also synthetic, I believe, and designed to supply extra cortisol beyond what our bodies make, for the purpose of clearing up the inflammation caused by our disease. It is used along with an immunosuppressant, once we have been dx'd. There are other corticosteroids, and one I remember someone using instead of pred was hydrocortisone, not sure if injected or in pills. I'm thinking it was less problematic in some way due to a longer half life. I could be wrong about that, but perhaps worth a search of the archives. It could possibly be an alternative for someone who can't tolerate prednisone. And could be easier to withdraw from?
That's all I can say without my lack of complete understanding becoming obvious! So do some research if you want.

Anne

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Thanks for the responses. I saw my pulmonologist yesterday and she went over the high resolution CT scan that I had this week. It was great news in that no new nodules and the ones there have gotten smaller. However, my labs are still crazy; she said to wait to go over them with my rheumatologist next week. Trying to enjoy the good news of the CT results, but I know something is definitely wrong. I’m on prednisone right now due to severe respiratory difficulties last Friday. She started me on 40mg and I’m tapering off now. Thankfully I’m not having many side effects on this. I’m not sure what the dose is for WG. Anybody able to give me a general idea?

@Shawny

At disease onset, you may get very high doses of pred. I started at 60 mg. I think there are people on here who have been as high as 80.

Just a word of caution. Don't taper too fast. Your disease symptoms may return, and you may experience pred withdrawal. Neither is fun.

Welcome to the family, Shawny.

Sorry about your disease and about your divorce (you wrote about on another thread). I hope you can find a way to reduce the stress and get enough support. We are here for you.

What are your labs ? You wrote that they are crazy.. ?

I didn't gain any weight on the pred ever. Not even on 60mg. I was on 60mg for 5 months when wg strated and one of my wg symptoms was loosing weight. I didn't gain it back. Also I suffer from Colitis and have lots of nausea and diarrhea so it might also explain why I didnt gain weight on the pred. Anyway, I think the secret is to eat carefully, fixed 5 small meals a day. No junk food, no sugary drinks - only water, no oily food, no snacks, etc. No food after 18-19:00 in the evening.

Pred can make us more emotional, even more raging. I had also a nice side effect of the pred: on high doses I cook better. No idea how it works. So whenever I cook something especially good, my older son asks how much pred I am taking :tongue1: