Old Girl.....Mew Member

[Marci]

Before I introduce myself, I want to say how glad I am to have found this site. I'm just starting my journey with WG and this site has already been a great help. It has calmed me down and given me so much useful information. What did people do before the internet.

My name is Marcia (AKA- Marci) and I'm 68 years old. I'm married to a great guy who no words could ever tell how I'd make it each day without him. I have three grown children but sadly no grandchildren. I live in the country about 40 miles north of Columbus, Ohio.

To say that 2012 was not a good year for our family would be an understatement. In Feb. my daughter who lives in California was diagnosised with Actue T Cell Lymphoblastic Lymphoma and my oldest son in May was diagnosised with Thyroid cancer. My diagnosis was officially given to me on Dec. 20th. My son is clear of cancer now and my daughter has completed one year of chemo and is doing well. She has to take chemo until she reaches 24 months from date of diagnosis. So you can see that we're all hoping 2013 has no surprises. Greatfully my husband and middle son are in good health.

I got my diagnosis from my local ENT who knew this was something unusual and not the allergy I thought it was. Started with a runny nose back in the fall of 2011 but I didn't go to the ENT until Nov of 2012 when I started having pain. He put me on antibiotics for two weeks, then did a Cat Scan and found it was only located in my nose. Next an endoscopy and tissue samples from both sides of my nose. Then the blood test to confirm for sure. He sent me to an ENT specialist at Ohio State but lest just say that did not turn out well once I started having joint pain and stiffness the day after Christmas. Ended up back at my PCP who has put me on prednisone and has gotten me into see a rheumatologist at the Columbus Arthritis Center but not until April 12th. If the guy doesn't know what he is doing when it comes to WG, I'll move on. I'm hanging in here for now. Well, that's my story. This is not what I had planned for my late 60's and 70's but what's an old girl going to do but take it one day at a time.

[Dirty Don]

Welcome to the 'club' as it were...hehe. Marci, you seem to have a good attitude already and glad you're finding help on here. Good people, lots of experience, and some good medical knowledge abounds here. Sorry about your family in general, a very tough year no doubt. As for seeing that rheumy, April is not soon enough...keep calling and someone will cancel an appointment...that's how I got in...was told I couldn't see anyone for nearly 2 months, kept calling, got in in less than a month...just keep at it...you will need that kind of effort and fortitude with WG. I have mostly sinus damage...it is what it is, but with quick and competent help, I am handling it pretty well...well, OK, so I sound like a frog for the rest of my life...I'll take it! Best of luck to you and yours!

[Pete]

Hi Marci,

I'll echo Don's welcome to "the club". Just to follow-up on his suggestion to try to get an earlier appointment, you may want to try the Cleveland Clinic, and tell them you're newly diagnosed - that may speed things up for you. I switched to there from Ohio State about 9 months ago. Dr. Alexandra Villa Forte is treating me, and I think she's great. She's responsive and really knows her stuff. I've also heard good things about Dr. Carol Langford at Cleveland Clinic.

I didn't really have anything against OSU as they diagnosed me quickly (experience similar to yours but with a shorter time frame) and I got pretty good care. However, at OSU, they may see a couple dozen WG/GPA patients in their practice. Cleveland Clinic sees over 700 of us. I know that several other regular posters to this forum who go there. Long story short - Cleveland Clinic is up to speed on the latest treatment protocols and will watch you carefully. (Yeah, I know it's a longer drive than to c-bus, but it's worth it!)

At the Clinic, they will probably also put you on an immunosuppressant such as cyclophosphamide (aka cytoxan) or rituximab (aka rituxin) for a few months to get you stable and into a medically induced remission. After that, they will probably put you on a milder immunosuppressant such as methotrexate, immuran, or cellcept. You'll probably stay on prednisone for awhile as well. Once you're stable and in a medically induced remission, you may be able to slowly taper off prednisone. (I hope so!!)

At any rate, welcome again to the club. Please drop in from time to time to see what others have to say about treatment, symptoms, and how their living their lives.

Best to you and your family!!

[drz]

I will second what Pete said above including a welcome to our exclusive club. No one wants to be eligible for membership here, but if you are, it is a great place to to get some support and helpful info. Hope this year goes better for you!

[mishb]

Hi Marci
Welcome to the forum. So sorry that you have to be here though :crying:

My GP asked me the other day (I haven't seen this one since before diagnosis) how can I stay so positive and not stress about being given this diagnosis/condition. I told him about this forum......without it I think I would have been a mess. I no longer stress the little things and have more compassion and feelings for others.
He said - I see, so it certainly helps to know that others are in the same boat and you are not the only one going through this.......you are not alone.

Please don't feel alone Marci, we are here to help with whatever question or worry you may have.....big or small.
It doesn't matter what time of the day or night it is, someone will always be on, as we come from all over the world with all different time zones.

Gentle hugs to you Marci and I hope the proper treatment gets started soon

[carriej22]

Welcome to the club you probably wish you weren't a part of! LOL..

I don't think it's what any of us wanted or planned, hit me at 22; am now 23. However I think the best way to deal with it is just take it all in and move along the best we can. Dwell on it too long and it's a sure fire way to get upset.

[annekat]

Welcome, Marci. I'm 60 myself, and have had WG for about 4.5 years, though I was only dx'ed two years ago. You are lucky to live in Ohio, though I don't know how far you are from the Cleveland Clinic. Many of us aren't lucky enough to live anywhere near a specialist center. However, most doctors can figure out what drugs you need to get your treatment started, the ones mentioned above by Pete; immunosuppressants and prednisone together are standard. It seems to me if you aren't on these, you should be, even if you haven't yet hooked up with the right rheumatologist. A rheumy at an arthritis clinic might not be the best fit; it should be someone with experience in vasculitis/Wegener's. I would think you could get by with a lesser qualified person for a short time but that you should try to be seen by the Cleveland Clinic's team of Wegener's specialists as soon as possible.

You'll get a ton of advice and friendship on here, and I agree, what did people do before the internet? This is a top-notch forum. i've learned more about WG here than anywhere else, by far. Feel free to ask or share anything about what you are going through with WG, and anything else in your life! WG can be such a life-changing event, and there are some serious moments on here, but we also like to tell jokes and have fun! So please join in. I look forward to hearing more from you, including that your WG is getting under control.

[pberggren1]

You are close to Cleveland Clinic. I strongly suggest getting set up there with Dr. Langford.

[RudiK]

Hello Marci and welcome to this "club". I echo everything the others have said already. I was your age when I was diagnosed and, since I had never had a serious illness in my live, it hit me hard. All the members/friends on this site helped me through the ups and downs and with great information with the medicine you need to take. Try to get an appointment as soon as possible and have them check your kidneys, you may not notice if they were impacted until it is late/too late. Good luck and all the best.

[Marci]

Thank you everyone for the warm welcome. I think with WG, it is definitely if you haven't walked a mile in my shoes it's hard for people to understand. You all understand!

Had a question. I have two friends that have AI diseases. One was diagnosed this year with Myasthenia gravis and the other has had Gullain -Barre syndrome since 1999 but both say they don't have any pain with theirs. What is it about WG that causes us pain? Is it because it's vasculitis?

Thanks for your great advice. I have decided that come Monday morning I start working on getting an appointment at the Cleveland Clinic. Pete, I will try for one of the doctors you mentioned. My PCP had first mentioned the Cleveland Clinic, but I was thinking I wanted to go closer to home and because I am so familiar with Columbus. I was wrong and now I'll get that corrected. Maybe this Old Girl can be taught new tricks.

[Jaha]

Marci

Glad you found us, we will all be more than happy to help you with any questions. I'm a patient of Dr. Forte's at CC and have been since Sept 2010. I also live in Ohio,southern down by Athens in the country. It takes me and my husband around 4 hours to get to Cleveland and we go there about every 3mos, because I'm not in remission yet. Go to the CC website and look up the rheumy dept it will tell you all the doctors and their specialities. Then call on Monday and they will ask you if you want an appt for today. The pain can be numerous things but it can also be a wegs flare. Good Luck to you.

Jana:biggrin1:

[Debbie C]

Hi Marci..I am sorry to hear about all the illness going on with you and your family. I also live in Ohio ( Youngstown ) I go to Dr. Gary Hoffman at Cleveland Clinic. He is a very good Dr. but seems to be more of a teaching dr either that or he's given up on trying to give me drugs !! I am one of those people that just can not tolerate the drugs so right now fortunately I am in remission and on 5 mg. prednisone. But that is the place to go ,there is also a motel right buy the clinic that gives you a shuttle there and back. If u want the info let me know. I try to make my appt. on Mon. so my boyfriend and I go up on Sunday and make a day of it. There is alot to do there and you don't have to fight a.m. traffic (Bad) Take care and get to see a dr. soon.

[Marci]

It's a good day here. :thumbsup: Can't thank you all enough for strongly suggesting that I contact the Cleveland Clinic. I just got off the phone with them and I've got an appt. on March 13th (this is three weeks earlier than my appt. I had with the doctor in Columbus) with one of the doctors that was suggested here.... Dr. Alexandra Villa-Forte. It would have been June before I could get into Dr. Langford. I have contacted my insurance and both the clinic and her are contracting under my plan. Let my PCP office know and my local ENT (doctor who got me my diagnosis) that I will now be going to the Cleveland Clinic. I now feel like I am on the right road to get to remission. Debra C I will be contacting you about the motel you mentioned in your post since my appt. is at 9:00 A.M. I Mapquested the route and it should take alittle over 2 hours for the trip. I called and cancelled my appt. at the Columbus Arthritis Center.

Thank You, Thank You Everyone

[pberggren1]

Good news for sure Marci. Dr. Villa-Forte is very good. A few members here have her as a doctor.

[drz]

It's a good day here. :thumbsup: Can't thank you all enough for strongly suggesting that I contact the Cleveland Clinic. I just got off the phone with them and I've got an appt. on March 13th (this is three weeks earlier than my appt. I had with the doctor in Columbus) with one of the doctors that was suggested here.... Dr. Alexandra Villa-Forte. It would have been June before I could get into Dr. Langford. I have contacted my insurance and both the clinic and her are contracting under my plan. Let my PCP office know and my local ENT (doctor who got me my diagnosis) that I will now be going to the Cleveland Clinic. I now feel like I am on the right road to get to remission. Debra C I will be contacting you about the motel you mentioned in your post since my appt. is at 9:00 A.M. I Mapquested the route and it should take alittle over 2 hours for the trip. I called and cancelled my appt. at the Columbus Arthritis Center.

Thank You, Thank You Everyone

Glad to hear about your appointment. Have a nice trip and get a good consult from them.

[Jaha]

Marci,

My husband and I stay in Indenpence,Oh in a LaQuinta Inn. They give a CC clinic discount and the room is around $65.00 per night,very clean and have a contenial breakfast (which saves some money). It is about 20 mins to CC even in high traffic. There is alot of stores and resturants around there and seems like a very safe area to stay. Good luck with your appt.I have to go back around that same time, haven't made my appts yet. You will love Dr. Forte's bed side manner.

Jana:thumbsup:

[annekat]

Good news for sure Marci. Dr. Villa-Forte is very good. A few members here have her as a doctor. I'm so glad you went that route, Marci! I would be thrilled with such an early appointment with Dr. Villa-Forte or any of the vasculitis specialists at the Cleveland Clinic. The best I might do here is an appt. with a good rheumy who routinely consults with Dr. Langford. Either that or travel 7-800 miles to Salt Lake City or the SF Bay Area. You are lucky, and I hope it turns out very well for you.

[pberggren1]

That's a good price for a hotel room Jana.

[HopeinTN]

Good luck with your appointment.

[Debbie C]

Jaha ,I mentioned to Marci there is a Comfort Inn right by the clinic that is very nice for $80.00. They have a free shuttle that takes you back and forth to the the hosp. and an awesome breakfast buffet. If you want to check it out I'll give you the info as well. Take care. We should all make appts up there for the same day and have a P.J. party !! I have an appt. July 29th at 10.00 a.m.

[Pete]

Hi Marci,

I'm glad you got an earlier appointment at Cleveland Clinic. You'll be in very good hands with Dr. Villa Forte. My first appointment with her lasted over an hour. We went through my medical history in great detail - especially since onset of GPA. She has an easy bedside manner. She also gives timely responses to questions that might arise between visits.

I generally have my appointment at around 11 AM. I leave Columbus just before 8 AM to get there at around 10:30, and I'm generally home by 3:30.

Good luck. I'm sure you'll have a productive visit.

[annekat]

I wish I could see Dr. Villa-Forte, darn it! I'm glad for those of you who can, though.

[Marci]

Jaha, wanted to let you know I called the Comfort Inn yesterday and made a reservation. That is a really good rate for a downtown hotel. Thanks for the info. Pete, can't thank you enough for suggesting Dr. Villa-Forte. Can't believe she spent that much time with you on your first appt.

When I introduced myself I forgot to mention that both my sister and brother have been diagnosised with an IM disease in the pass year too. My sister's doctor says they tested her for WG and it's not that, but I think it is. She says that her doctor doesn't think it's what they first thought it was but having been able to give her dx. Her's started last Jan. 4th with the joint pain and stiffness. Not quite sure when my brother's started but he has the inflamed eyes and seeing someone at the Univ. of Florida who did not give him a specific dx. but according to my SIL said yes it was an IM disease and put him on drugs. I think it is interesting that I now have all three of these symptoms.

Hope everyone is having a good day.

[Marci]

Just had to drop in to say I think this WG has gotten my brain, even more than being over 65. Just noticed that my thread title is "Old Girl....Mew Member" when it should be "New Member" and I also stated my age as 68 and heavens know why I would do that as a woman since I'm still 67. Could also be the prednisone since it seems to make me very talkie.

[Natalie]

I Marci welcome and good luck at the new doctors , great
site and heaps of help and great people always willing to lend a ear .xx

[Pete]

Hi Marci,

When anything goes wrong with my body(including memory), I just blame it on pred. Hope that excuse will be gone in a few weeks as I finish my taper off pred. I'm at 3 mg/day now and will go to 2 on Friday. I hope to be off completely by April 1 (he said while knocking on wood).

On a more serious note, you may want to prepare some notes regarding your family medical history (especially AI diseases) as well as a timeline outlining the appearance and severity of symptoms related to GPA. (Assuming you haven't done this already)

[annekat]

Just had to drop in to say I think this WG has gotten my brain, even more than being over 65. Just noticed that my thread title is "Old Girl....Mew Member" when it should be "New Member" and I also stated my age as 68 and heavens know why I would do that as a woman since I'm still 67. Could also be the prednisone since it seems to make me very talkie. Well, Marci, Wegener's does affect the functioning of the brain.... in fact, I don't know about anyone else, but I've looked at your thread title several times and did not notice that it said "Mew Member"! As a cat lover, you can count me among the Mew Members. As for age, I'm 60, and I do have trouble telling whether it's the WG or my age that is getting my brain.... a combination of both, I'm sure.

[mishb]

I saw it said Mew but I thought my eyes were playing funny buggers. The lines kind of blend together and could be an N :razz:

Whenever I forget something or just have one of those brain fades - my family call me predhead,
or say, there she goes again, I bet she's going to blame the pred :flapper:

I'm sure it's just another WG symptom - don't be too worried

[Marci]

Thanks for understanding my brain. Does anyone know who the oldest member here is? I must be up there for the running.

You will noticed I changed my Avatar. Saw this pink pig on another site and since I run around alot in my big pink bathrobe I couldn't resist. I like her attitude.

Pete, thanks for the suggestion about my family history and a timeline. Also wanted to tell you my oldest son took flying lessons and has his pilots license now. Hasn't done much this pass year because of his cancer. He took lessons at Delaware and now uses the Marysville airport. He loves it.

[annekat]

That looks like Piglet, one of the great literary characters of the 20th century. Can't argue with Piglet or Pooh, their logic and ways of looking at things was always something to learn from.

I did like your other avatar, too. I'm guessing you are not the oldest person ever on the forum, or even presently. You are an attractive looking person and you remind me of some people I know in my community.

[Pete]

Hi Marci,

Hope your son can get back into the sky soon. I miss it. I haven't flown solo in about five years. I'm not sure I could pass a physical right now. I may scratch the itch by just going up with an instructor. My avatar photo was taken from a sailplane at Harris Hill National Gliderport near Elmira, NY about three years ago. That's the last time I piloted anything.

Be well,

[Psyborg]

Hey Marci,

I wanted to say hi, belatedly. I'm in Delaware so also in Central ohio...and I also see Dr Villa-Forte. She's a good doctor and I think you'll be pleased.

Thanks,
Bob

[Marci]

Hi Bob, I had noticed your postings before and your OSU shirt caught my eye. Big OSU football fan here and my daughter went to graudate school and OSU and is a Huge fan. I didn't realize you that you see Dr. Villa-Forte too. I'm exicted about seeing her, but also nervous about the drugs she might put me on and how I will do on them. I want to ask her if because I'm over 60 will I not respond as well. I know when my daughter got cancer and I looked online it stated that if you were over 60 the outlook for remission wasn't as good. This may not hold true with WG, but I want to know. I am lucky that I was in general good health before this. Makes me mad because I did every preventive thing my PCP wanted me to do. I think I was a bit smug about my health before. Learned my lesson.

[Dirty Don]

[QUOTE=Marci;66345] I'm exicted about seeing her, but also nervous about the drugs she might put me on and how I will do on them. I want to ask her if because I'm over 60 will I not respond as well.QUOTE]

I'm well over 60...yikes...and have responded very well to the drugs...it has more to do with your metabolism of the drugs than your age...although one's age does throw up danger signals to the docs. I happen to respond well to most drugs...go figure! This is NOT cancer, but it's perhaps even more dangerous because the WG actions are just insidious little buggers...so take the drugs, please.

[annekat]

Don't worry about the age thing, Marci. A bunch of us on here are 60 and over and are doing relatively well. The drugs will make you feel a little weird at first, and maybe more fatigued than you already are, but you will get used to them and when you start feeling your symptoms ease up, you will be very glad they are available. And the fact that you were in general good health before should be a strong point in your favor.

[Marci]

[QUOTE=Marci;66345] I'm exicted about seeing her, but also nervous about the drugs she might put me on and how I will do on them. I want to ask her if because I'm over 60 will I not respond as well.QUOTE]

I'm well over 60...yikes...and have responded very well to the drugs...it has more to do with your metabolism of the drugs than your age...although one's age does throw up danger signals to the docs. I happen to respond well to most drugs...go figure! This is NOT cancer, but it's perhaps even more dangerous because the WG actions are just insidious little buggers...so take the drugs, please.

I promise I will take the drugs. I'll picture the drugs chasing those "insidious little buggers" and running them out of town. My goal is to get to a place where I'm able to travel to California to visit my daughter. My biggest fear is that something might happen with her or me and I will never see her again. Sorry for this downer statement. Will start to think positive thoughts right now.

[Psyborg]

Hi Bob, I had noticed your postings before and your OSU shirt caught my eye. Big OSU football fan here and my daughter went to graudate school and OSU and is a Huge fan. I didn't realize you that you see Dr. Villa-Forte too. I'm exicted about seeing her, but also nervous about the drugs she might put me on and how I will do on them. I want to ask her if because I'm over 60 will I not respond as well. I know when my daughter got cancer and I looked online it stated that if you were over 60 the outlook for remission wasn't as good. This may not hold true with WG, but I want to know. I am lucky that I was in general good health before this. Makes me mad because I did every preventive thing my PCP wanted me to do. I think I was a bit smug about my health before. Learned my lesson.

Don't worry about the drugs until you meet with the doctor. I'd guess they'd try RTX with MTX or Immuran to follow, but hard to say. As Don mentioned remission is not an issue of age for Wegs.

And Wegs really appears to affect more healthy than unhealthy people. Many people on this site were very fit before they got ill. I had other issues previously, but was probably in the best shape i'd been in for years when I got sick.