New to Wegener world

[3dottrs]

Hi... I’m Cathy and was just diagnosed with GPA June 15th 2018...after 6 months of bronchoscopies..CT guided bronchoscopies..lung biopsy finally a name was given to my ailment.. My story started upon returning from 10 day Disney vacation ... day after returning home I became very ill... thought it was flu but after 2 X-rays was diagnosed with pneumonia...then CT was performed and I was told the nodules on my right lung were cancer!! ..I was then referred to a pulmonologist who performed 30 biopsies but no cultures and lots of blood work but stated it was not cancer and he didn’t know what I had but they would keep searching..PET scan... more CTs done.. by this time the 3 small masses had taken over right upper lobe of my lung and needless to say I was scared! I sought a second opinion and luckily this pulmonologist performed more blood test right away suspecting wegeners...she was on the right track and immediately got me with a Thoracic surgeon who removed a nodule from my lung and the report confirmed Wegeners!!!
My new pulmonologist once again got me in with the rheumatologist to get started on treatment...
I started on a very high dose of prednisone (60 mg) but had to cut back to 40 as the high dosage caused an AFIB incident...so currently I’m on 40mg daily.. Folic Acid daily and methotrexate weekly..had to hold off on Bactrim as I had a reaction... this also makes me worry as all I’ve read state Bactrim is important..
I will have my one month followup on the 23rd and this will be addressed then.
I feel very fortunate that my kidney and liver functions are normal !!!
I am terrified of this disease and did reach a very very low point the first 2 weeks in.. I have come to grips with it now but there is still so much to learn..
So far things I’ve seen happen are nose bleeds...coughing blood but this has finally stopped.. swelling of left ankle.. Wegener rash on leg..hot flashes .. my voice has been taken to a hoarseness..tiredness (this is improving) vision changing...in the beginning chills and fever ( no longer have this)
I don’t want this disease to control my life therefore I will continue to learn as much as I can.. make changes where change needs to be made but I want to live a life as close to normal as I can!!!

[Pete]

Hi Cathy,

Welcome to the “club”. You’ll find the answers to many of your questions here, so ask away. It’s ok to vent about our dumb disease, meds, side effects, etc.

I hope your local rheumatologist has significant experience treating wegs. If not, a consult with one might be worthwhile. When you see your doc, you may want to have a written list of questions you need answered. Make sure you get the time you need to cover your entire list during your appointments. Ask about meds, when you should be feeling better, side effects, what to do if you feel worse, and next steps in your treatment plan.

The disease is generally pretty treatable. With effective meds, healthy eating, as much exercise as you can handle (start slowly and gradually increase), and living life as fully as you can, it’s possible to return to a near normal life.

Good luck, and keep us posted about how you’re doing.

[3dottrs]

Thanks Pete for your response...
I so needed to vent and to be able to do so with someone who knows how this disease makes you feel.
thanks again for the advice and I have added the questions you suggested to my ever growing list �� for my next appointment..
hope you are doing well

[Masha]

Hi Cathy,
First, listen to everything Pete said. He’s dealt with this culprit longer than I and his advice is on the mark.
Second, and this is from me. The panic, fear and depression you are feeling is normal. As you get answers you will have a better grip on what you are dealing with and how you will deal with it.
What not to do- do NOT believe everything you read on your computer. Many articles are outdated. Some may have information that does not apply to you. Believe me, when I was first diagnosed, before I ever met my Rheumatologist my husband and I lost it reading those articles.
Important questions to your doctor. But the oddball thing you are thinking or feeling in between, ask it here. I see people answering questions about things I would never have thought of. Sinu-Pulse for nose, ice the ankle, cooling pillow for hot flashes- Costco sells them.
Also, if you are just feeling down and need some emotional support give a holler. I am retired and have the time to listen.
By picking up someone else’s spirits, it helps me to feel better too. So have at it, give yourself a little pity party. Then go open your front door and take a deep breath of fresh air and remind yourself you are still alive, just different.
Masha

[3dottrs]

Thank you so much Masha for reading and replying to my post!!! It does help me not to feel so alone.. family is very supportive but unless you have this devil you can not imagine the feelings that are bouncing around inside..
I’m one month in today so everything is still so scary... not being able to do yard work bothers me because as a Taurus I love digging in the dirt... I am thankful for the strength I found this week to clean my house lol..
I’m sure as time goes on I will have more and more questions but for right now... thanks for being there !!!
( and you are right ... I’m staying off internet!!!)
what part of the Carolinas? I was born and raised in NC but now live in VA...

[Masha]

We are in Charlotte, so we have the best of both North and South Carolina. Born and raised in Ohio, lived in Michigan, then married my husband. At that time if you were in corporate, you got transferred. We lived in Naples Fl, LA, the SF Bay Area, then many years in Jupiter FL. I missed the seasons, so we found this the perfect moderate weather place to retire. In the back of our minds, knowing we were aging we felt we needed access to a city with good health care. Wow, how true we find that.
When your Wegeners gets under control you will be digging in the dirt in no time. My things are knitting and mixed media. Last year, when I was so weak I tackled a 24 canvas mixed media project. They all fit together to make one big wall art. Physically, I don’t know how I did it, but it was psychologically the best thing I could have done. My mind was on the project and not myself. For the people out there who work with this disease and must continue to do so for not only the money but also the health insurance, my hat goes off to them. By the time I was diagnosed I was retired and on Medicare. This gives me relief.
What part of Virginia-love Williamsburg.

[3dottrs]

I’m in Chesapeake... about 45 minutes from Williamsburg.....born in Smithfield NC...left when I was 25...husband was military for 30 years so we’ve lived in Charleston SC(beautiful city).. San Diego Ca.. Guantanamo Bay Cuba... then VA!!!

How long have you been dealing with Wegeners? I am so new to this and so confused with all my feelings... some days I feel like nothing is wrong then I have a bout of hard to breathe.. not sure if it is the Wegeners or the result of the lung biopsy... today is a rough day... feeling very tired.. several bouts of hot flashes and just over all moody... guess it’s the meds... can’t wait until next week when I see my rheumatologist to hopefully get some answers..

[Alysia]

Welcome to the family, Cathy.
The beginning is the thoughest, in all ways. In time, it will get easier; the meds will work more and you will become stronger, body and soul. The more you know about WG, the better you can fight it and deal with it. 40mg pred can sure makes one moody.
I was on bactrim for 2 years and then it affected my liver so I couldn't take it anymore. So, not all of us are on it.

Hang in there, write as much as you feel like. We are here for you.

[RiverJoy]

Hi Cathy!
Hang in there! We get it! Good days ahead!!

[vdub]

Can't add much other than what the others have said -- don't believe everything you read on the internet and it gets better and easier over time. Its taken a long time, but I think I've finally turned the corner to feeling half way decent for a "length of time". This forum has helped a lot of people, to include me, and is probably the only place to get current info and help. Best of luck on your wegs journey!

[BenHornsby]

Welcome Cathy,

Yes a very familiar story, it's so daunting the not knowing or understanding. But time does help in getting used to it and seeing the patterns that you have.


There is so much info online and some is great and some is irrelevant, lots of people have other conditions that may have affects along side of GPA and can forget to mention them every time they post or write about it.

Ask all the questions you can in as some odd symptoms have easy answers, but some questions we would not think to ask or make a connection with GPA.

Ben ;-)

Sent from my SM-G930F using Tapatalk

[little jerry]

hi Cathy..
I'm 72 years and I have had WG for 6 years now. I have not been on the forum a couple months now. I also had a little bout with depression. So I got out my crochet hooks and made a few throws and gave them to my friends. I leave some at the cancer center. It makes me feel a little useful when I cant go outside and dig in the dirt. Put a bottle of sanitizer in your pocket and USE IT. Pred makes me go up and down on high doses.
Welcome aboard and keep your head up.

[Marley3562]

Hi...I love that I found this forum and others that are new, and anxious with this disease. I hope my post is finding you feeling better. I do feel that each week I learn more from my drs or others here that help with forging forward.
Marlene

[3dottrs]

Almost 2 months since my diagnosis and I’m still feeling so tired. For those that have been dealing with this longer, when does it get better? I try to force myself to go out shopping etc but within the hour I’m exhausted.. hot flashing like crazy!!

This is my second week of feeling so tired... not sure what to do to make it better...I sit with a little hand held fan beside my chair as the sweating is coming so often... face all red :blushing: then the water pours lol.....I have these purple marks that have just popped up on my arms( as though they’ve been scratched)they usually go away as fast as they came..

The hardest part so far is just being SO tired!!! Disease or meds???!!!

Prednisone has been lowered to 30mg... methotrexate has been increased to 8 pills.. once a week.. divided 4 in morning 4 in evening..leucorvin for the day after and the folic acid pills daily... blood sugars have been high in evening but good in morning.. therefore I’m now taking metformin to help control this result of the prednisone...

just needed to vent and hanging on to statements that “it will get better” (hopefully soon)

Love to all and hope you are feeling well
:thumbsup::thumbsup:

[Pete]

Hi Cathy,

It does get better, but slowly. I was about four months post dx before I felt like expending any energy toward regaining strength. I remember think I’d just take a walk around the block. I was pretty winded by the time I got to the corner (about 50 yards) when I had to turn around and return home. But, I resolved to do a little more each day. In about six weeks, I was comfortable walking a mile at a good pace (about 14 minutes), so I gradually upped the distance over the next few weeks to 2-2.5 miles 4-5x a week. I was dxed in January, and I didn’t feel anywhere close to normal for about six months.

I wonder about your hot flashes. Does your wegs doc think it’s disease related? If so, perhaps a stronger wegs drug is in order. Also, how fast are you tapering off prednisone? For most of us on here, slow tapers seem to go more smoothly.

Good luck. Exercise gently and steadily and increase slowly. You’ll get better.

[Masha]

Hi Cathy,
As your medicine decreases it does get better. High dose prednisone reacts differently on all of us. I think you will feel better once that is lowered. I am currently weaning myself down from high dose due to an infection. It gives me a patch of white corpuscle bumps on my face, that disappear as the medicine amount declines.
I can’t address the amount of Methotrexate you are on. Before I started Rituxan infusions I was only on one a day.
Walking would be good for all of us, but I am not an early riser and by the time I am up and out it is just too darn hot.
You do get tired and cranky from the medicine. Prednisone is denying you your proper sleep and you end up exhausted during the day. Before Wegeners I was extremely active. Now my days are planned, limited and paced.
Good question- the disease or the medicine? Probably both is my guess. Don’t put yourself under pressure. This is new to you. Just try to take one day at a time. Don’t expect to do what you used to do immediately. You will build yourself up slowly. Hang in there. Sending prayers and hope you way.
Masha

[seied]

Hi Cathy,
I can’t address the amount of Methotrexate you are on. Before I started Rituxan infusions I was only on one a day.
Masha
Hi Masha,

I don't think Methotrexate is a daily pill. It's a once-a-week, cytotoxic chemo medication.

Ed.

[Masha]

Thanks Ed,
You are absolutely right about the Methotrexate. I am so glad you caught my error. I don’t want to put the wrong stuff out there. Too many pills, and I can’t keep them all straight. I am currently on high dose prednisone and that screws my mind up too. Today my poor husband got hell for moving my eyeglasses and they were on my head the whole time. Who’s on first, who’s on second.......
Masha

[Alysia]

Hi Masha,

I don't think Methotrexate is a daily pill. It's a once-a-week, cytotoxic chemo medication.

Ed.

Hi Ed.
I was on mtx once a day. My dr. Told me to take the pills everyday instead of all in the same day. Mtx didnt work for me after all. I wonder if it didnt work because of the way I took it although my dr assured me that it is not related.

[seied]

Hi Ed.
I was on mtx once a day. My dr. Told me to take the pills everyday instead of all in the same day. Mtx didnt work for me after all. I wonder if it didnt work because of the way I took it although my dr assured me that it is not related.

Hi Alysa,

Someone please correct me if I'm wrong, but I don't think there's a protocol for daily Mtx.

https://www.pharmacytimes.com/publications/issue/2005/2005-02/2005-02-9297

Another:
http://theconversation.com/weekly-dose-methotrexate-the-anti-inflammatory-drug-that-can-kill-if-taken-daily-60322

Ed.

[Alysia]

Hi Alysa,

Someone please correct me if I'm wrong, but I don't think there's a protocol for daily Mtx.

https://www.pharmacytimes.com/publications/issue/2005/2005-02/2005-02-9297

Another:
http://theconversation.com/weekly-dose-methotrexate-the-anti-inflammatory-drug-that-can-kill-if-taken-daily-60322

Ed.

I guess you are right. (Although my dr. said that daily dose was also ok.)

[seied]

I guess you are right. (Although my dr. said that daily dose was also ok.)

Maybe you'd want to give Mtx in pills another try.
A combination of weekly Mtx and a daily low dose prednisone might put an end to a smoldering GPA.

[Alysia]

Maybe you'd want to give Mtx in pills another try.
A combination of weekly Mtx and a daily low dose prednisone might put an end to a smoldering GPA.

Thank you for being thoughtful. I got the rtx as both maintenance and treatment. I hated the mtx, it caused me hair falling and many UTI's. It worked but not on the wg.

[seied]

Thank you for being thoughtful. I got the rtx as both maintenance and treatment. I hated the mtx, it caused me hair falling and many UTI's. It worked but not on the wg.

Well, keep in mind that when you tried it before it was dispensed wrong, so the negative side effects might not be due to the Mtx itself but the wrong daily dose.

Also, I'm taking folic acid every day to prevent my hair from falling off and reduce side effects of Mtx. With the exception of fatigue, it works for me perfectly. I have not lost my hair. I also didn't catch any infections -including cold/flu in an entire year.

I did suffer a flare up right after my (former) rheumatologist made me taper off prednisone completely and would not change the course of treatment to stop the flare up. I was down to a safe 3mg/day back then and now I'm having a very hard time even at as high as 20mg/day. He's no longer my doctor because of that. I'm down to 10mg/day and still have some roving arthritis. I'm hoping I can get back to 3mg/day again.

I would also say that your daily Rx of Mtx is a medical mistake. I'd be careful with that doctor.

Ed.