Vikings fan diagnosed in June 2009

[Purple Bleeder]

Hello to all! I was diagnosed in June of this year and feel pretty lucky compared to a lot of you. I've been affected with WG in the sinus area. A bad headache sent me for a 2 day stay in the hospital in May, and was told at a follow up in June that I have Wegener's. I started out with 20 mg of Prednisone and 15 mg of Mtx. I'm down to 5 mg of Prednisone, but my doctor has increased the Mtx to 17.5 mgs.

I have a question: does anyone here know if it's ok to get a flu shot? I asked my doctor, he hesitated and then said yes. My wife researched Mtx on the net and read that people taking Mtx shouldn't get the shot without a doctor's consent. I'm not that confident in my doctor, so I thought I'd find out what people here have been told.

I feel fortunate to have found this site and to learn from everyone's stories and and advice!

[RCOSSIO]

First welcome to our forum, second shame you were diagnosed with Wg or your new BFF as we call it here. Thirdly...Vikings Fan are u kidding me. Root for a winner like the 0-3 Fins..off to a great start and a loss of a QB who.....by the way is Favre available????

All kidding aside, my Rheumy does not recommend a live vaccine especially since our immune systems are comprimised. Saying that you should definitely consult with a Weg Doc, somebody who specializes in Wegeners...period. My understanding the Mayo Clinic in Rochester should be the place to go, but as you will see you can obtain various info by reading several post.

Good Luck to you and your miserable led Vikings..hahahha...I am a sad Fin Fan 2day!

[Maestra]

Welcome! We're neighbors! I'm in Elk River.

I am currently not on Mtx, so I can't really answer your question. I've been told to get one, though I'm fighting a cold right now and can't. I just recently found this site, and have found it to be quite useful.

Good luck!
Heather

[DuaneHart]

Welcome Purple Bleeder! Another from Minnesota--that makes four of us! I live in Rochester and was diagnosed in May. I just got my flu shot and pnuemonia shot tonight at work ( I work at Mayo and also am seen there). My rhuemy dr said I need to get the seasonal flu shot, pnuemonia shot and the H1N1 shot when it is available. She said just not to get the nasal mist vaccine but the actual injection. I am currently on 15 mg MTX and down to 35mg prednisone, going down by 5mg every 6 weeks. Dr Amin says that slow and steady is the key to the treatment. I am also very fortunate compared to many on this forum. I don't have any sinus or kidney involvement. I have had a couple of lung infections and the huge spots on my legs and torso. Hope you are doing alright!

[jola57]

Hi Purple Beeder, I have been on cyclophosphamide for a year and 60 yo 50 pred and for the past 2 years had both the flu and pneumnia shots and I have not had any problems. Everyone around me gets sick but I'm OK. I am now on methotrexate and will get both the flu and H1N1 when available. As far as I know these are not live vaccines. In your case if you do not have confidence in your doc find a WG specialist in your area or at least have your doc consult regularly with a Wegs specialist. Vasculitis foundation, and Doug is by now and expert on the site:p, is also a good place for information.

[Sangye]

Welcome to the group! I think you should warn your doctors and nurses about your purple blood. Might scare them otherwise.....

I hope you're being treated at Mayo. Even though your case is mild so far, you always need a Wegs specialist looking out for you. Wegs is unpredictable and you can easily be under- or over-treated.

As far as the flu shot, I recommend you ask a Wegs specialist who knows your case well, and also do some research on your own. It isn't something to take lightly. There are risks associated with doing it or not doing it, and each person has to decide for themselves.

While there is a lot of press coverage about the risks of H1N1 and how everyone should get the shot, they aren't giving fair coverage of the risks associated with the shot. The 1976 Swine Flue shot was taken off the market within a few weeks of its use, because of its strong association with Guillain-Barré syndrome (GBS). The CDC website notes this (http://www.cdc.gov/ncidod/eid/vol12no01/05-1007.htm) on their website, though they seem more concerned about how it was handled in the press than about acknowledging or fixing the problem. (Or about compensating the thousands of people who were damaged by it)

No one knows why the vaccine caused GBS, and the current vaccine is configured the same. The package insert of the current shot lists the risk of GBS.

There are long-term risks of vaccines that should be considered. The seasonal flu vaccine contains mercury. The risk of Alzheimer's is 10 times higher in people who have received 5 consecutive shots, than in people who had 1, 2 or no shots. But your risk of catching the flu and having serious complications might be higher than the added risk of Alzheimer's. So again, no one can make this decision but you.

(BTW The nasal spray vaccine is the "live" vaccine. So if you decide to do the vaccination, only do the shot.)

[Doug]

Same for me Purple Bleeder. My doctor always verifies that a given vaccine is killed virus first before recommending it, but definitely recommends I get these two available (or soon as available). Thanks for bringing it up. I've felt pretty good for so long, I'm starting to get sloppy about preventative measures like flu shots!

I also welcome you to the forum! This has been some year, with two deaths, but many more, like you, diagnosed early into the process so major organs weren't involved. What a blessing that is! I hope that means American doctors have become more aware of the symptoms of WG, and are making faster diagnoses in their patients.

Also, it's interesting that so many Minnesotans have shown up on the forum. (There haven't been any from my region, which is a little disappointing as I'd love to make contact with a couple I know are out there, less than an hour's drive away, that I probably never will meet because of privacy laws in the medical community: I don't have names or anything to locate them unless they show up on this forum or in Vasculitis Foundation newsletters.) At least two of recent studies have taken place in areas with mining, something Minnesota has up around Duluth, I believe it is. Is there anything of that nature where the four Minnesotans are that might be a common factor in your WG? Just curious, in a non-scientific way. It might be, too, that there's the Mayo Clinic factor, where access to the doctors there means Minnesotan doctors are more apt to have professional networking ties with Mayo Clinic specialists.

[Sangye]

Also, it's a good idea to take a Vitamin D supplement whether or not you take a flu shot. It's known to prevent flu.

[Jack]

I have always had the flu shots as they become available and have had no short term reactions. As for Alzheimer's, I have none in my family background and I doubt that I'll get to be old enough.

[coffeelover]

Hello Purple Bleeder from another Minnesotan. I enjoy the Vikes, but am now spending my efforts rooting for the Twins! (baseball)
I live in Viking training camp country though and love that we have Favre now!n Awesome catch last Sunday by Lewis and Favre.!
Anyway.....I digress....I have Wegeners that affected my sinus and airway. I ended up with a trach for 7 1/2 months. I am presently on MXT and 10mgs of the dreaded PRED. Today I visited with my ENT's. The one who did the surgery and the one I started with. I seem to have some nose dryness and my ENT suggested saline flushings and gel, along with humidifiers. This is something I will live with forever, but was happy to hear that everything else was OK.
I am back to my regular routine and do not particpate on this site as much as I would like as my schedule is back to full speed ahead.
I truely wish I did not have this disease, but I do remind myself of where I have been and keep an eye out for any possible further WG complications in my future.
Welcome to you and I am glad you found this site. It was a great part of getting me back on track with acceptance of the disease and knowledge shared by all.
Lisa Coffeelover One of the Minnesotans
Hey! Maybe we could al meet for coffee?

[coffeelover]

Oh by the way....I get the Flu shot every year and have had the life time Pnumonia shot. I will get the H1N1 shot when it becomes available
LIsa

[Purple Bleeder]

Thanks to everyone for their quick replies and advice! Sounds like I need the flu, H1N1, and Pneumonia shots. My wife has been needling (pun intended) me to get these and will be happy to hear it's ok.

So far, I've only had sinus problems, eye pain, and fatigue. I'm hoping to get the disease in remission soon. I'll keep everyone posted and am glad to have somewhere to go to for these answers. I wish everyone else the best in battling their Wegener's. I'm happy to see some Minnesota people on the site and look forward to maybe meeting some day!

[RCOSSIO]

would it be wrong to say "Go Packers"

[Purple Bleeder]

Ouch! Richard, I thought you were a Dophins fan? That hurts worse than the WG pain I have!

[RCOSSIO]

UR RIGHT...IT HAS NOT BEEN FUN BEING A FIN FAN FOR THE LAST 18 YEARS (THAT'S HOW LONG i HAVE BEEN A SEASON TICKET HOLDER). I GUESS SAYING "GO PACKS" HELPS ME MITIGATE MY PAIN...AND WE HAVE NO QB NOW....OHHHHH IT WILL BE A LOOOOONNNNGGGGG SEASON!

[Tim Roberts]

More comments from yet another Minnesota Wegener's patient. Strange that there are so many of us right here in Minnesota and it seems a bit odd to me. Anyone else think this is strange?

In any event, I am so thankful I found this opportunity to meet all of you and experience all of your expertise and wisdom with this disease. I was diagnosed at the end of July this year after feeling sick for nearly three months. I also have to consider myself fortunate as I had only lung involvement in my right lung and no kidney or other issues. My treatment has gone well and I am down to 20 mg of prednisone daily and weekly methotrexate treatments.

All of this is still so new to me your input, suppport and thoughts are very valuable not only to teach me more but to realize that there are a number of us out there with this disease. Before this opportunity to talk to all of you, I have never had contact with any other Wegener's folks. Thanks for all your help.

[Sangye]

It's nice to meet you, Tim. What's going on in Minnesota? I do hope you go to Mayo for treatment. I wonder what they'd have to say about so many of you from one state.

[Tim Roberts]

Thanks Sangye for your message. Not sure what is happening in Minnesota but there sure seems to be alot of lately.

I am actually being treated by a rheumatologist here in St. Cloud and she currently has four Wegener's patients. I am fortuante, however, to have a brother in law who is a physician at the Vascular Institute in South Carolina and he sees us Wegener's folks all the time. He is continually viewing my progress and treatment so I feel very fortunate. With that resource, maybe I can be of some assistance to other folks as they ask questions. It seems as though this is such a strange disease as we all seem to have different symptoms and issues.

Thanks for the message and have a wonderful weekend.

[Sangye]

That's a great resource for you. Otherwise, with a rheumy who sees only 4 Weggies, you'd be in deep trouble. At first it seems like a lot--considering how rare Wegs is-- but once you work with the Wegs specialists, you see it's completely inadequate experience. As your BIL knows, you have to see Wegs all the time to really understand it.

[Doug]

Hi, Tim- I'd commented recently myself about the unusual frequency of weggies from Minnesota lately. It's worth bringing up. I think you are fifth ot sixth now from that state. It seems like most of the Minnesotans on the forum now are from the southern end of the state, too.