Newly diagnosed and scared

[Yogasloth]

Hey everyone,

Just three weeks ago I got diagnosed with Wegener’s. I live in the Silicon Valley.I think initially it started with my first ear infection ever this May. Symptoms like fatigue came to, but sometimes went away again. In July i got diagnosed with tendinitis as my knees where hurting super bad and I thought i was floxed by Cipro. The night sweats started, but I was under a lot of stress at that time and google said, it can happen. After flying home to my family in September I got a sinus infection I couldn’t get rid off and then the all over body ache started and the night sweats came back. I sent a message to my gp and she ordered me immediately in, took my blood, urin and sent me too get a chest x day done. In the afternoon I also had to do a cut scan. I basically had my diagnose the next day and she referred me to a rheumatologist with experience of this disease. A week later a good a lung biopsy done just to confirm everything. I have nodules in the lower part of my lungs and some cavities as well. What I don’t have is a problem to breath or shortness of breath. I started with 60mg prednisone which got lowered 4 days ago to 40mg after my new blood and Urin Test came back normal. I initially had a little amount of blood in my Urin, but the kidneys where still working good. Today I have a heart ultrasound as my heart rate is a little jumpy right now. Tomorrow I will have my third Rituxan infusion. I also take Atovaquone, as I can’t have sulfur drugs. My body is doing fine right now, I don’t have any pain and the tests gets redone I think in 3 weeks. All my doctors work together and have a positive attitude towards my chances, but I can’t see that right now. I’m so scared that I will cough up blood, as I haven’t done this yet. Not even after the biopsy. Mentally this diagnose hit me so hard that since yesterday I got a prescription for anti anxiety medicine. My doctors think it’s the steroids amping this all up. I also see a therapist right now. I’m still in shock and super overwhelmed by all this information. Seeing you posting here after been diagnosed for several years gives me some hope and I think people who are doing really well with this disease might not be posting here all the time. I know that with spotting a flare early and get treatment one is able to live a fairly normal life, but I am afraid I won’t spot it. I just don’t want to die so early. I want to have a family. My husband is doing great and he is positive that we can manage this. I am not sure how often I will look into this forum at the moment as I am not sure how I can handle all this information. I will go on vacation next week and I am still working. I hope this will keep the bad thoughts away. I just don’t want to get my life ruined by this disease!

[Pete]

Hello Yogasloth!!

Relax. Breathe. Ok, I see you’re doing some of that.

Your initial experience sounds like mine from nearly eight years ago. It sounds like you’re getting good care. It’s good that hubby is supportive. The good news is that you will probably return to something close to your pre GPA life at some point. It took me about 18 months to get there.

Just pay attention to how you feel. If you have some sort of odd symptom (roaming joint pain, rash, eye or ear pain) — call your GPA doc ASAP. Better that it’s a false alarm or symptomatic of something else than active GPA.

The steroids can cause anxiety. Be careful as you taper. You can generally go faster at higher doses, but you’ll probably need to be more gradual once you get to smaller doses.

Enjoy your vacation. That’s good medicine.

[Yogasloth]

Hi Pete, thanks for your answer. Do you mean I have to look out for those signs right now or when I think I have a flare up? I understood it so that currently I’m “safe” with the steroids and I’ll need to wait till the Rituxan works. I am also nervous that I’ll get my fourth Rituxan infusion four days later, because of my vacation, but my doctor said it’s fine.
I will keep in mind that the steroids have to be tapered slowly. Do you know at what amount? Unfortunately I don’t have the side effect of being hungry from the steroids, the anxiety caused loss of appetite, but I force myself to eat.

[Pete]

Just become more aware of how you feel. Once the disease is under control, you’ll know how “normal” feels. If you have something abnormal come up, that’s your clue to pay closer attention. If you’re no better (or you feel worse) after a couple days, call your doctor.

As for prednisone tapers, I can only share my experience. From 60 to 40, it was -10 mg every two weeks. From 40 to 20, I dropped 5 mg every two weeks. From 20 to 10, I dropped 2 mg every two weeks. It got interesting below 10. I dropped 1 mg/month down to 5 with no problem. When I continued toward zero at that rate, I did get to zero for a few weeks before I started having roaming joint pains. This was a mild flare. (I got my first round of rituximab then — four weekly doses.)I went back to 10 for afew weeks and tapered down to five. I stayed at five for most of three years and then tapered to zero at -0.5 mg/month. I’ve been pred free since June 21, 2018, with no ill effects.

Also, most people tolerate rituximab pretty well. You’ll get a big dose of steroids, some benadryl, and some tylenol to prevent allergic reaction. The flow rate is very slow. (My last dose — #13 — started at 33 ml/hour. It ‘s a 300 ml infusion of which one gram or less is rituximab.) They increase the flow rate every hour. The infusion generally lasts about four hours. I generally don’t sleep well the night of the infusion, but I’m back to normal in 36 hours. You should be fine on vacation. ENJOY!!!

[whatthewhat]

Well, to start "Yogasloth" is such a brilliant username that I can't help but cheer you on :thumbsup: And you also nailed that phenomenon that any forum like this or FB group is going to have a preponderance of problems - people don't post all yippee skippee very much because they are out there yippee-ing and skipping. :thumbup: And one more attaboy/girl for realizing that it can be beneficial self-care to take a break from knowledge-stuffing. I myself had to take a break or at least strictly ration my forum time about two months after my daughter's diagnosis because I was getting stressed out rather than just informed and maybe even encouraged. so way to go on that also!

I totally get how scared you are, and I think in a way you are right to be. This disease is no joke and should not be taken lightly. And it can be very disorienting to have your identity and life-dreams questioned all of a sudden. I am not minimizing your shock. But I will say, from my perspective from over five years in Weggie-Land, that you have every reason to feel confident (when the shock and horror have died down.) You were diagnosed before major organ damage occurred. You are young. You live in a part of the world that has top-notch doctors. You have a support system, including mental health support, and honestly, stress plays such a big role in the disease that having a therapist on board your team is really excellent! And you are responding to treatment. I feel really good about your future.

My daughter is living a great life - it hasn't ruined her life at all. It has changed it, I believe, but hasn't ruined it. WG took one sport from her, but she gained a better one. It took one hairstyle, but she gained a different one. And she is chasing dreams, exploring new vistas, making friends, etc etc etc. You have as good a chance as anyone for children and joy and even relaxation in your future. I hope even in your near-future, on your vacation. :smile1:

[Masha]

Hey Yogasloth,
The replies you already received are right on.
It is so normal to be frightened at diagnosis. I was OK when I heard it, but once I googled it, I was walking into walls.
Don’t worry about spotting a flare. In my case, they have been loud and clear. I get a sinus infection, have gum problems and my legs really hurt.
Last year I totally overdid Christmas. The day after giving a big party for the neighborhood I couldn’t get out of bed.
But the most important thing to remember is Wegeners hits us all differently. You will know when something isn’t right. Time is of the essence, so don’t hesitate to call your doctor.
Yes, the steroids have weird effects on us. But again, everyone reacts differently to this drug. I have learned a great deal from others on this site. Things doctors don’t think to tell you are talked about. Use this site as you feel comfortable. Just saying I find it to be a great source of support and information.
As far as wanting a family, we have had others not only report the birth of their babies, but they post the beautiful pictures of their offsprings.
You sound like you are on top of it, good doctors, tests, medicine and you are going on vacation. Good for you.
Be well.
Masha

[carolynamu]

I remember when I first started down this road it was the Fall of 2013. Came down with a sinus infection, then my mother fell and was hospitalized. I had to fly down to be with her and my dad as they shift living arrangements. I honestly think flying with a sinus infection kicked off the whole problem. Unlike you I didn't get a confirmed diagnose until this year. In between there were all the well it could be GPA (wenger's) or EGPA (Chunge Struss) or Poly something arthritis. I always knew when I was having a flare. Once the initial symptoms are controlled, you will recognize them also. I was scared and super stressed. Yet in the last 4 years I continued to work full time. I just recently retired and started my own business. Yes it's slowed me down and the most recent flare has forced a temporary pause. But my new treatment plan is working and I will be getting out of pause shortly. Talking to a consular really helps. The one who helped the most was the hospice lady who was working with my mom. Because she helped people face the death of a parent she was able help me to really gain a perspective on my health.

[NatriceRomeo]

Hi Yogasloth!
I can understand how you can feel overwhelmed & think “why me”? But to help put this in perspective... I was diagnosed at 17 & am now 40. I think I have lived an outstanding life. Like every life I have had ups and downs. My life isn’t over. I am a person that has Wegeners. But there is so much more to me than this disease. It does not define me. That being said-of course there are times I am exhausted & sometimes you need a break. I hope these words from everyone else gives you hope & you now know you are not alone
Natty


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[NatriceRomeo]

Hi Yogasloth!
I can understand how you can feel overwhelmed & think “why me”? But to help put this in perspective... I was diagnosed at 17 & am now 40. I think I have lived an outstanding life. Like every life I have had ups and downs. My life isn’t over. I am a person that has Wegeners. But there is so much more to me than this disease. It does not define me. That being said-of course there are times I am exhausted & sometimes you need a break. I hope these words from everyone else gives you hope & you now know you are not alone
Natty


Sent from my iPhone using Tapatalk

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I feel your pain, Yogasloth!
Both my Son and myself have had Wegener’s/PAN for over 20 years. Although we both have our health challenges essentially we have both triumphed over such a diagnosis.
Since we were both so sick and untreated at the beginning I was relieved to get a diagnosis. My advice would be to see how much better you will likely feel once the Rituxan has worked and has put you in remission. Rituxan has worked well for both of us and had been the best treatment so far, with no side effects.
I’ve found that worrying about what could happen with this disease is a waste of time and that using a proactive approach to overcome the challenges works best. There is a great deal of information and support available today to better cope with this, so all in all it’s a great time to become diagnosed.
Please let me know if I can be of help.

[Yogasloth]

Hi everyone,

I wanted to give you a quick update. My shitty year keeps on giving me more to battle. When I was on vacation my house got burglarized and last week someone rear ended my husband and me while we were standing at a red light. It pushed us in the car in front of us. But you know what? We are fine and it is just stuff. Everything will be covered by the insurance and we now have a security system. Over the past weeks I learned to give any “what if” and bad thoughts a one way ticket back to where they came from. My body feels fine and most of the time my mind too. I have positive stress at work and besides the one day I got my echocardiogram and a panic attack, I only missed work for my infusions. I had my last infusion the Monday after Thanksgiving and haven’t noticed any side effects yet. My blood and urin tests so far came back normal. Since Tuesday I am now on 50mg Imuran as maintenance medication. We will see next week how my body reacts to it, but so far no weird side effects. After testing we will go to 100mg if everything is fine. I am now down to 30mg prednisone and we will taper it down slowly to hopefully 0mg, but everything with time. I am also still taking the Mepron. Good news is that I am finally not vitamin D deficient anymore. It was really important to my Rheumy (and me) to get me out of it. So far the only thing that Wegener’s took from me is a little bit of hearing, but I can still manage without a hearing aid.

I was following some people on Instagram who have Wegener’s, but I unfollowed most of them again as it I don’t want to be reminded all the time. I only have two in my list, who actually also do some different content :).

I wanted to thank you all so much for your kind replies. I also got several private messages from people who are also doing fine with the disease. I wish you all good health, happy holidays and sooner or later they’re will be a cure for all of us! I’ll gonna keep you posted from time to time, but as I said, I don’t want to be reminded all the time. I take my meds, do my regular testing and keep on living my live.

[[email protected]]

Well, now it’s 2019 (hard to believe- Belated Happy New Year everyone!) and I have become far more ill. Developed Malignant Hypertension (195/123) and couldn’t get my Rituxan infusion last week. Had to see cardiologist who put me on Beta Blockers which have sent the BP down to normal. Still must get a CT Angiogram on Wednesday. Hopefully the Rituxan will be rescheduled soon. Have very severe polyneuropathy, CNS Vasculitis but kidney function appears to be normal. Thankfully my doctors are agreeing to treating me as an outpatient!

[Alysia]

Well, now it’s 2019 (hard to believe- Belated Happy New Year everyone!) and I have become far more ill. Developed Malignant Hypertension (195/123) and couldn’t get my Rituxan infusion last week. Had to see cardiologist who put me on Beta Blockers which have sent the BP down to normal. Still must get a CT Angiogram on Wednesday. Hopefully the Rituxan will be rescheduled soon. Have very severe polyneuropathy, CNS Vasculitis but kidney function appears to be normal. Thankfully my doctors are agreeing to treating me as an outpatient!

Thank you for sharing. Sorry you became more sick. Why do they delay the rtx for so long ? Can pred help you in the meantime ?

[Yogasloth]

I was surprised yesterday to have an email in my inbox that someone replied to my thread.
Kwnorton: I am so sorry that you are currently doing not that well. I hope you will soon be able to get the Rtx infusion and be better again.

I was yesterday at the Vasculitis Foundation conference in Seattle and I learned a lot. Also met some really nice people there. Also, tonight I got my ANCA test results back. I had sky high numbers when I got diagnosed 3 month ago and today they are negative. I know that they don’t mean that much, but it made me smile.

[Alysia]

Also, tonight I got my ANCA test results back. I had sky high numbers when I got diagnosed 3 month ago and today they are negative. I know that they don’t mean that much, but it made me smile.

Anca results, for some of us, might mean A LOT: negative after high positive anca might mean a remission for you. High anca might mean wg activity. Negative anca won't necessary rule out wg activity.

[Yogasloth]

Alysia, you are right. For me this all is still new and my doctor told me not to focus too much on it. She told me it’s more important to listen what the body says. Obviously i would love to use the ANCA results as an indicator, but I think in my case we need more data as I am just at the beginning of my journey. My body feels really good right now, but I am also still on 25mg of Prednisone. Next taper to 20mg is in 2 weeks.

[[email protected]]

Thanks for the reply.
Wish I could have attended the Vasculitis conference!
To answer your question, the Rituxan got delayed due to bureaucracy. Also can no longer take Prednisone as it worsens my Malignant Hypertension and causes a host of other issues.
Actually your ANCA numbers do mean something to me, as a patient who has had various lab tests all over the place since diagnosis. And pre-diagnosis, since I had symptoms for about 10 years before someone took it seriously enough.

[Yogasloth]

It makes me so angry when I hear that patients not get taken seriously. And it makes me even more angry when I hear you didn’t get your infusion because of bureaucracy. It shouldn’t be that way.
I do feel really fortunate that for me everything went so fast and that I have a good team of caretakers.

And of course, I hope no one of you got that wrong impression that I don’t care about my ANCAs. I really do and as I said it made me happy this morning to see the result.

[[email protected]]

Yes, it’s pretty upsetting to wait for Rituxan infusions until the relapse becomes so bad I have to face all of these drastic symptoms. I flew to California to see my Rhematologist on December 4 and it took until January 9th to schedule the infusion (which has now been postponed). I don’t know when my doctor’s going to phone the infusion center Pharmacist to
OK it. This is all my fault for thinking we could live in Nashville where there is no good care for Vasculitis patients (at least who have it like myself and my son). Except for my cardiologist at Vanderbilt nobody there understands a thing. They won’t let us switch rheumatologists there! I wouldn’t submit myself to a hospitalization here if my life depended on it!

[richard052018]

Back in November it looks like Vanderbilt opened a new vasculitis center. My apologies if you have already gone down this road, but even my cardiologist mentioned when he was at Vandy as a resident in the 90s they had a good rhematology department back then.

http://news.vumc.org/2018/11/08/new-clinic-focused-on-caring-for-vasculitis-patients/

[[email protected]]

Thank you so much for the 2018 information on Vanderbilt’s Vasculitis Clinic. Hopefully my son and I may seek out an appt. with Dr. Byram. A major problem so far is that Vanderbilt Rheumatology will not allow us to see another Rheumatologist other than the one we have originally seen there. It is a policy from the dark ages and the person we’ve seen has had zero ability to diagnose relapses even when they are severe, life-threatening and clearly diagnosed and treated by other (non-Vanderbilt) Rheumatologists. Any advice any of you have for this situation would be appreciated.

[toolmanmatt]

Hey-
If you can get to the John Hopkins Foundation in Cleveland, Ohio that might be better than flying to California. You will find in Cleveland they "KNOW" the disease and have top notch doctors. Im in Indiana and my Rheumatologist suggested if I feel I need to go anywhere that would be the place to go. But I have some good doctors in Indianapolis. My fiancé is a nurse and helps a lot with "coordinating" all the doctors and tests and ensuring all doctors are on the same page. I was told in the beginning 11/2018 I was a "severe" case and I had multi organ attack.....it is a life adjustment and a challenge in the beginning and one day at a time and focus on how you feel.....you know your body. Im currently receiving dialysis and just this week I was told by my Nephrologist I could skip a day and see how my body does/feels. Im not in remission and have 2 more Cytoxan infusions to complete before I go on a maintenance dose. I could go on........ I love this forum as it helps me to realize I am not alone and share a lot of what others feel. My Pulmonologist said Weggies is totally under diagnosed- When I seen my Rheumatologist on Monday and told her about this forum she wanted to know all I learned and we work together as a team, but as I mentioned she told me to ONLY read from John Hopkins site about the disease so that I get accurate information. Wish you well and post your journey as you never know who it might help and thats a goal of mine to educate others about this disease and maybe the doctors and (insurance companies) will someday have a cure or get better at "approving" the darn drugs that save a persons LIFE.

[Pete]

@Matt: Small correction here—Johns Hopkins is in Baltimore. They have good expertise with vasculitis. Cleveland Clinic is probably #2 at treating vasculitis after Mayo Clinic.