Newly Diagnosed

[sshiveley]

Hi, thanks for accepting me in this support group. Newly diagnosed, frustrated with this whole thing. I am an ER Nurse, I am suppose to take care of others, this is making it difficult. Sherry

[annekat]

Understandable that you'd feel that way. It is overwhelming at first, hard to get the right information on the disease and its treatment. You have come to the right place to find info, support and friendship from all of us who've been through it. Know that things will get better and you'll likely be able to return to something close to the life you had before this reared its ugly head. Ask anything, share anything, I'm looking forward to hearing more.

Anne

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[Masha]

Hi, thanks for accepting me in this support group. Newly diagnosed, frustrated with this whole thing. I am an ER Nurse, I am suppose to take care of others, this is making it difficult. Sherry
Welcome to all the new members who have recently come on board. This is not a fun disease but this is a great site.
I will reiterate what others have already said. You need a doctor highly experienced with Wegeners. For some, because of location and travel, it is not always possible. In the USA, some of us have received great care at Cleveland Clinic, Duke, Mayo and many more.
I was diagnosed and treated for this disease for a year before I came to this site. In my case the docs suspect I had it for years and was misdiagnosed. Others were healthy right up until it hit. That said, I frequently mutter, this is the weirdest disease.
All kinds of emotions will hit, fear, anxiety and yes guilt- what did I do to cause this.
The symptoms and the remission vary widely. Some have it hit are treated and resume normal activities, others have it linger and do not return to work. In my case, I was retired, but busier than ever. I have learned to pace myself and avoid situations where I am exposed to coughs and colds, because I always ended up with bronchitis or pneumonia.
Rituxin infusions have proven very beneficial for many of us. But here again, the treatment depends on the patient and doctor.
No matter how great your doctor, the support and understanding you will get from others in this group is irreplaceable. Once someone came on and said he had itchy feet. Sounded weird. About six months later I had a sleepless night because of itchy feet, then I had a flare.
One of the other things we discuss is the necessary evil of prednisone. Some can get off of it right away, others have to increase their dosage because of infection. In turn, it causes other health problems, such as diabetes, weight gain and pie face. The longer you are on it, the harder it is to get off. I am currently waging that battle and it has taken me 8 weeks to get down one mg. In the past, trying to go faster brought on an infection and an increase in prednisone.
We also must be aware of our diets. Some find special diets, others just say common sense. Exercise is great, but if you are in pain, then don’t beat yourself up.
Lastly, be kind to yourself. Do what you can, when you can. I know this is easier said than done, but try not to stress. If you feel overwhelmed, seek professional help. Don’t be afraid to say you are afraid. Usually objects in window seem bigger than they really are.
We are here for all of you.
Masha

[sshiveley]

Marsha- Thanks for reaching out, yes, I am one of those that question the how/what did I do to get this, I am very discouraged right now, tired of being tired and not feeling like myself, the symptoms are better but still there, frustrates me to no end, I am really blessed to have found this site, but working in the ER subjects me to all kinds of illnesses, ER is all I know. Thus has really thrown me for a loop, as I am sure it has every one here . Thanks again, Sherry

[sshiveley]

Marsha, I guess one of the many questions I have is how do you know you are in remission? I have had a round of Retuximab (weekly doses for 4 weeks) although I do feel a lot better, I am still having issues, my nose continues , I still have double peripheral vision in right eye, constant fatigue, and shortness of breath with exertion. I have a follow up appointments with the rheumatoidologist and pulmonary ( masses from Wegeners ). I have slowly weaned down the prednisone, now taking 15mg daily down from 40 mg until follow up with the Dr.s. With the decreasing doses of prednisone, my joints are starting to ache. Sherry

[Masha]

Marsha, I guess one of the many questions I have is how do you know you are in remission? I have had a round of Retuximab (weekly doses for 4 weeks) although I do feel a lot better, I am still having issues, my nose continues , I still have double peripheral vision in right eye, constant fatigue, and shortness of breath with exertion. I have a follow up appointments with the rheumatoidologist and pulmonary ( masses from Wegeners ). I have slowly weaned down the prednisone, now taking 15mg daily down from 40 mg until follow up with the Dr.s. With the decreasing doses of prednisone, my joints are starting to ache. Sherry

Sherry, remission is hard to determine, since there are many blood tests involved. My C-anca has always come in higher than normal. I think the best way to tell remission is how you feel, doesn’t sound like you are there yet. After my first series of Rituxan, I mistakenly figured I was going back to normal and I really overdid it. What I was really feeling was a jump in energy from prednisone during infusion. I ended up flat on my back.
Here are a few things that helped me. Prescription Fluocinonide on Qtip for nasal crusts. I was directed from people on this site to get a Sinu Pulse machine. It is wonderful, far better than those ridiculous pots to irrigate. My ENT, who diagnosed me suggested I take Mucinix, you can get generic. I take one a day. For leg pain, I take an Epi Epson Salts bath nightly. Fortunately, I have a big deep tub. I only use half of what the bag suggests. When the pain is really bad there is Deep Blue Rub.
My Duke doctor who is a specialist in Wegeners started me on three Bactrim a week. The members going to Cleveland Clinic are also on this. My doctor was on the team that determined 2 day larger infusions are as effective as the 4 day. She has seen everything, even Wegeners of the breast!
I wasn’t on this site very long before I realized I had a hole in my septum. Pure panic! Others who have had theirs turn into saddle back quickly responded and told me how they dealt with it.
Are you currently working or on sick leave? Have you found a Wegeners specialist? I wish I would have done that in the first place instead of wasting time with a non specialist rheumatologist.
Masha

[sshiveley]

The rheumatoidologist specializes in GPA, I really don’t think I am in remission either, don’t feel like myself at all, which is frustrating as I was always active. I was on sick leave for 2 months but now back at work in the ER. Co-workers ask how I am feeling and say I look great, I just smile and say thanks but underneath it all I feel terrible. I really hope I don’t blow my septum, can’t afford another surgery or time off if work. It all could he worse though, I see so many tragedies every day which keeps me in check. Sherry

[sshiveley]

I am also on Bactrim X3 weekly, but only 3 times a week how does this deter bacteria?

[Pete]

I am also on Bactrim X3 weekly, but only 3 times a week how does this deter bacteria?

It’s prophylaxis for PCP pneumonia to which immunosuppressed people are more susceptible.

[sshiveley]

Thanks Pete, for some reason I thought I was taking it for my kidneys, good to know I am somewhat protected, especially with the people I come into contact with at work. Sherry

[seied]

The rheumatoidologist specializes in GPA, I really don’t think I am in remission either, don’t feel like myself at all, which is frustrating as I was always active. I was on sick leave for 2 months but now back at work in the ER. Co-workers ask how I am feeling and say I look great, I just smile and say thanks but underneath it all I feel terrible. I really hope I don’t blow my septum, can’t afford another surgery or time off if work. It all could he worse though, I see so many tragedies every day which keeps me in check. Sherry

Dear Sherry,

Sorry you are also going through this.

I'm about to complete my second year with this and I managed to figure out a few things about how this disease and the treatment interact with each other, which I will share soon. I'm almost in remission and no longer afraid of relapsing. Currently using Mtx weekly and a little Prednisone daily.

Right now, I think a good option for you is to contact HR to determine if you have a short-term disability coverage, and if so, you may want to use it. Your health is of utmost importance, and managing this illness is very difficult and challenging.

In the long term, as you know, the treatment is immunosupression, possibly for the rest of your life. In your line of work, you're exposed to all sorts of pathogens. Our risk of suffering complications of opportunistic, contagious diseases is dangerously high.
Ed.
(I'll follow up later)

[sshiveley]

I did check into disability at work, they only provide 60%, not enough sadly. Sherry

[annekat]

Sherry,
I usually mention, but forgot to, that our archives may be searched, going back to the beginning of the forum, on any WG/GPA related subject you can think of. Just look for the word SEARCH on the Lobby page. This affects everyone differently, and some info in the archives may be out of date, especially in terms of available treatments. But it really helps to get an overview by reading what many others have been through. The other thing that helps a lot is actually observing your own experience with how things are going and eventually seeing patterns that you recognize. For example, you mentioned that when tapering your pred dose, your joints started to hurt. Eventually you will be able to read those signs on a day to day basis so that you will, in some ways, know more than your doctor about what is going on with your body, and be able to help him or her decide on the next course of action. It is a journey that will become more comfortable and familiar over time. Someday you will realize that you feel much better, and will find yourself confidently answering questions asked by newcomers here, and giving them encouragement. Once again, I ask myself, where would we be without the internet and the forum?

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[sshiveley]

Thank you so much for your post, I am trying
here, just trying to grasp all of this. I am so blessed to find this site.

[seied]

The other thing that helps a lot is actually observing your own experience with how things are going and eventually seeing patterns that you recognize. For example, you mentioned that when tapering your pred dose, your joints started to hurt. Eventually you will be able to read those signs on a day to day basis so that you will, in some ways, know more than your doctor about what is going on with your body, and be able to help him or her decide on the next course of action. It is a journey that will become more comfortable and familiar over time.


So true!
I keep Prednisone in 1mg, 5mg and 10mg pills.
I adjust my dose on a daily basis, currently I'm at 3.5mg/day.
If you find that continuing to taper causes symptoms to reappear, then this rate may be too fast.

[annekat]

So true!
I keep Prednisone in 1mg, 5mg and 10mg pills.
I adjust my dose on a daily basis, currently I'm at 3.5mg/day.
If you find that continuing to taper causes symptoms to reappear, then this rate may be too fast.My doctor has been resistant, for some reason, to prescribe me those different denominations of pred pills. So I just have 5mg pills and have to split one of two, to get a 7.5mg dose. Yet he doesn't seem to mind if I take it upon myself to change the dosage. Alternating is another way to taper without further splitting of pills. I tried alternating 7.5mg with 5mg over each two days, so the dose worked out to 6.25mg. I had a little trouble, not with sore joints, but with night sweats and fatigue. So I went back to 7.5mg.This summer my rheumy and my pulmonologist agreed, since I have allergies to grass and other pollens, that I should stay at 7.5mg. But I'm anxious to try that taper again and get it down to 5mg/day. I think when I get to 5mg/day and lower, my doc will prescribe the 1mg pills. Or I could alternate 5mg with 2.5mg for starters, averaging out to 3.5mg/day. But I just get tired of splitting pills!

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[sshiveley]

Thank you!

[sshiveley]

I am not comfortable with changing my doses yet, staying on 15 until I see the Dr. again but I have seen here on this site that many people do this, just don’t trust myself yet to play with the doses. I hope to be able to stop taking Prednisone all together but afraid that won’t be the case. ��

[annekat]

I think you are smart not to change doses at this point, and your doctor might not like it. I've been at this for 8 years and think I was left on most of my meds for too long. That gave me plenty of time to get comfortable with changing prednisone doses. I wouldn't do it with any of my other major meds. Although I have a light case compared to some, it's taking a long time for anyone to think I'm ready to come off the meds. You have gotten down a lot lower on your prednisone than I did in that amount of time. I did not take Rituxin because it was just being approved for WG/GPA. So I took cyclophosphamide (Cytoxan), a very effective drug, but somewhat risky long term, and now I've been on methotrexate around 7 years. I've only had a couple of mild to moderate flares and only one cold, but also had shingles last year, which can be linked to taking an immunosuppressant. Other issues have been bone and tissue damage in ears, sinuses, and lungs, vertigo, double vision, and anemia. I have permanent hearing loss and a saddle nose, and cannot smell. A lot of the damage could have been avoided with an earlier diagnosis. It was 2.5 years too late. But I'm thankful I have no kidney damage so far, and realize I'm doing a lot better than some.

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[seied]

My doctor has been resistant, for some reason, to prescribe me those different denominations of pred pills.
Then next time ask him to prescribe your Prednisone using the 2.5mg instead of 5mg pills.

[seied]

I am not comfortable with changing my doses yet, staying on 15 until I see the Dr. again but I have seen here on this site that many people do this, just don’t trust myself yet to play with the doses. I hope to be able to stop taking Prednisone all together but afraid that won’t be the case. ��

Agreed, you can change your dose later on once you have achieve remission, are taking low doses and gained experience with this.
There are two stages to our treatment: 1)Achieve remission 2)Maintain remission.
If you experience symptoms coming back at this early stage, I'd recommend to let your doctor know right away so he/she can manage your dose.

[sshiveley]

Being new to this will take time to figure out what my body is telling me, thanks for your input, Sherry

[Masha]

Sherry, Regarding your long term disability_ If you qualify for long term disability and you have paid into Social Security for 40 quarters, you are qualified to receive the full amount of SS that you would receive at age 65, in addition to your disability income. Not only that, you would then qualify for Medicare. Health insurance, such as Medicare is paramount to someone with our disease. Your employer is probably taking money out of your paycheck for insurance right now. If you add up the cost of your commute, lunches, insurance etc, you might just be breaking even with this plan. You just might want to make an appointment with a disability attorney to see what steps you need to take.
Masha

[sshiveley]

Marsha, Thank you so much for this information!! I will definitely look into it, Sherry

[Masha]

Sherry, Just had lunch with friends. Their nephew has an autoimmune disease too. He applied for the disability 3 times. He was rejected the first two, but got it on the third try.
Masha

[sshiveley]

What was the breaking point that they approved him? I still have to make appointment with disability person, just don’t know if I can swing it financially. Sherry

[Masha]

Don’t know why they finally approved it. I am guessing there are questions that qualify you. With Wegeners there are days when some of us just can’t move, and at other times it is different. Maybe someone else on this site is on disability SS and can help with information. Also you might try to google SS disability.