What the Newly-Diagnosed Need to Know

[Sangye]

I thought I'd start this thread specifically to help the newly diagnosed. I find myself repeating a lot of things and would prefer to direct people back to this thread at least for some of it.

I'm requesting that we keep the thread free from other topics. We all remember what it's like to be newly dx'ed--how hard it is to wade through info, especially when sick! :)

[Sangye]

According to the Wegs specialists, the most important thing is to get a Wegs specialist right away. That's a rheumatologist who sees hundreds of Weggies and does Wegs research. There are very few in the world.

Here are the different ways to make this happen:

1) Best Scenario-- Establish yourself as a patient at a major Vasculitis Center
The Wegs doc is your own doc and s/he oversees all your care. You have direct contact with them. Many people travel to a center a few times a year for ongoing care and have their local docs and facilities follow instructions accordingly. It works great. Major centers in the US: Johns Hopkins (Baltimore), Cleveland Clinic, Boston University, Mayo (Rochester).

2) Next Best-- Have your local doc consult with a VF doc (http://www.vasculitisfoundation.org/node/44)on an ongoing basis
The Vasculitis Foundation docs offer this for free. Your doc has to initiate it. You have no direct contact with the Wegs doc, no way to ask questions. You're subject to your local doc's interpretation of the advice, his/her ego, wilingness to call and ask for help, etc.... Works fine for some people, but under the best circumstances you're still missing out. However, it is much better than not having a Wegs specialist on your case. If you're unable to travel to a center or have other issues (eg insurance), please consider doing this. If you're in the US, there is no reason not to have a VF consultant. If you're outside the US, check with the VF. Some of the docs in the US will consult internationally and there are also VF docs in other countries.

3) Have only your local doc(s) on your team
Many newly dx'ed members are so pleased that their local doc finally dx'ed them and maybe even saved their life, that they think it'll be okay. Even if you're at a famous hospital, and even if you're surrounded by a large team of doctors on your case, they don't have the skill to handle Wegs.

[Jack]

To get the ball rolling, in no particular order, I offer the following -

Prepare yourself for a long haul - Wegener's is a life long condition and the journey will be full of ups and downs. With a little luck, this could include some very long periods of remission with few symptoms, but prepare to be disappointed by relapse should this occur. It can be treated and is just a setback, not a disaster.

You may well find yourself taking a cocktail of drugs, many of which will have their own side effects and it becomes difficult to tell the difference between these and a Wegener's relapse. So if you find that you are having symptoms similar to those you experienced at the onset of your disease, act quickly to get it checked out. Wegener's can cause permanent and serious harm if not treated.

It is normal to go through periods of feeling down about having this disease - you have every right to because you have been dealt a bad hand! However, it is not good to feel down all the time. If you feel like this, please seek help. You may well be suffering from an imbalance due to the drugs or disease which can be treated, or perhaps you just need someone to help you come to terms with the new situation you find yourself in. If nothing else then post your feelings on the Forum and you will at least get a surge of support.

[pberggren1]

According to the top Wegs Docs at the Vasculitis Centers at least 75% or Wegs Patients relapse.

[pberggren1]

Also while on Cyclophosphamide (Cytoxan - ctx) one has to drink lots of water to flush out the cytoxan out of the bladder to help prevent bladder cancer which ctx can cause. I would recommend at least 2.5 litres a day. It would be best to take the ctx early in the morning and drink lots of water through the day so that you don't have the ctx sitting in your bladder over night.

[pberggren1]

Merkel from Boston says hearing problems are severely unappreciated by clinicians as a devastating effect of wg and other vasculitides. Says more research should be done. It is clear at the conference that hearing impairment is fairly routine - no one can hear anyone very well it seems and there are more hearing aids than canes (and there are several canes).

JanW posted this on another thread.

[JanW]

Posting and running from the conference. New centers are being established as those who trained with one of the major centers spread far afield from their mentors. Univ of Utah is the furthest west. It is clear from this conference that both UNC and Mount Sinai in Toronto are considered on par with the majors. Cedars Sinai in LA is getting established as a center, and I met a ped rheumy fellow from there last night who dx 3 patients under 12 in the last month - one who had been sick for several years. Hospital for Special Surgery in NYC (my hospital) is considered good and the major rituxun study was done there (in addition to other places)

If you can't get to a center, call one and try to get a recommendation of a doctor in your area. These docs know where their students and colleagues went when they left their institutions.

[pberggren1]

That is awesome Jan. Thanks for the info.

[pberggren1]

The docs all agree that they don't know what makes people flare or what keeps them from flare. Even people on rtx flare. What they all say is that 75 percent if us will flare at least once and 10 percent of us will never achieve a medicated remission and always have some signs of active disease (which can be controlled and is not necessarily destroying your body.

This was posted by Jan in another thread. I find it interesting that you can have some signs of active disease and it is not necessarily destroying your body.

[Sangye]

Posting and running from the conference. New centers are being established as those who trained with one of the major centers spread far afield from their mentors. Univ of Utah is the furthest west. It is clear from this conference that both UNC and Mount Sinai in Toronto are considered on par with the majors. Cedars Sinai in LA is getting established as a center, and I met a ped rheumy fellow from there last night who dx 3 patients under 12 in the last month - one who had been sick for several years. Hospital for Special Surgery in NYC (my hospital) is considered good and the major rituxun study was done there (in addition to other places)

If you can't get to a center, call one and try to get a recommendation of a doctor in your area. These docs know where their students and colleagues went when they left their institutions.
GREAT news!

I'm hoping you'll start a new thread with everything you learned at the Symposium, Jan. I know you're taking notes like crazy and we really appreciate it.

[elephant]

Thanks JanW for taking great notes! Much appreciated here!

[Palmyra]

With my limited (4+ year experience,) with this disease and coaching my daughter, I cannot agree with Sangye's original recommendations more. Get thyself to a major vasculitis center as soon as possible. All else is a poor second. But, that being said, second is better than third! I attended a local VF meeting here in the wilds of the great plains of North Texas to find a VF (under Doc Seo and Faulk,) trained Rheumy, ready to educate all of us locals.

So many attending were being over-medicated (10-15 in our small group alone), still on high dose cytoxin or pred, risking permanent damage to kidneys, bladder and much more. He repeatedly stated that once diagnosis was made, the singular mistake he saw regarding treatment was over-medication.

For all of our brothers and sisters in the US, UK and Australia, I offer a modest request for guidance for our newest members. Get a superior diagnosis and treatment plan. It is so very hard when just starting out on this journey. Jump to that high bar, and know that you are on the right course.

Floss! :-)

[onatreetop]

Yes . yes and yes again. Be sure to give the docs all of your concerns and bring notes!! So many questions have been missed just because I forgot til after I left the appt.. I do call back and ask but then have to wait.
The other BIG mistake I made was worrying so much about the weight gain that I did to much cardio and ended up tearing the legament on the bottom of foot. lost feeling in 4 toes and feel like I am walking on rocks now. When I am on my feet to long it swells. I saw a foot doc who said try rocker shoes first. They were great for my hips and back pain went away but the foot is still messed up. The only other thing he can try and do is remove scar tissue from around the nerves and hope it doesnt come back 50/50 chance? Becareful the pred can do alot to your body and mind. Iam no superhero with superpowers. Just a wg on pred. watch me run around like a chicken with my head cut off. yep thats me.
That and a bad space bar.

[pberggren1]

Yes, while on Pred one has to take it easy and no heavy lifting. Pred weakedens tendons and ligaments, and too heavy of an exercise can tear those.

[DEE]

be careful onatreetop i over did things week before last paid for it with three days wipeout last week be careful DEEx

[pberggren1]

Most American surgeons don't even do Caldwell Luc anymore according to the speakers at the conference. They described it as being very gruesome (which for an ENT is saying a lot). The problem with surgery in WG is that you are potentially stirring up inflammatory tissue without realizing it, and that you would do something that alter anatomy that could stop the blood flow to the area -- that's how a saddle nose develops for instance, and there's no way to get that blood source back. One woman described her son who had a tumor around the ear -- but still retained nerve function -- and the advice from both ENTs was to keep the tumor in place and just wear hearing aids. They were very big on not altering anatomy -- that got repeated several times.

This was originally posted by JanW on anther thread.

[freakyschizogirl]

The problem with surgery in WG is that you are potentially stirring up inflammatory tissue without realizing it, and that you would do something that alter anatomy that could stop the blood flow to the area -- that's how a saddle nose develops for instance, and there's no way to get that blood source back.

Hmmm that seems very interesting to me!! I was never erally told how the saddle nose developed!

[JanW]

For you, Sam, it might be that you developed that hole in your septum and your nose simply collapsed from that. However, I have no hole or really any sinus problems at all, but my bridge collapsed because it stopped getting blood to the area. Another reason you should not put another person's tissue, or something synthetic, into that area for repair.

[freakyschizogirl]

I'll have to remember that when i FINALLY get them round to sorting out my nose!!

But how did i get the hole?? I did hear a whispered conversation from my ENT consultant to the registra that they may have caused it either by the first biopsy they did, all the cauterizations i've had or from some of the sprays they perscribed.

[JanW]

Absolutely all of those things could be true. Our, I suppose that tissue inside the nose could have died, causing the hole, which then caused the collapse.

[freakyschizogirl]

Ya either way i'll never really know. thanks for the info

[Sangye]

:back on topic:

Ahem.

[freakyschizogirl]

lol sorry Sangye!!

[pberggren1]

Ya! You don't want to piss Mr. Putin off. After all he is the most powerful man on earth.

[freakyschizogirl]

lol indeed

[Sangye]

I'm serious. This thread is for people new to Wegs--something they can skim through quickly when they're first diagnosed and feeling overwhelmed. Can we please just keep it free of chit-chat? Please add things that help them.

[Rini]

4 new people. i am still kinda new 2 this but find it importent 2 say that prednisone can greatly slow the healing proses and it would be a good idea to try and taper off it at all possible before surgeries. I was told this and assumed I would take a few more weeks to heal...what should have been a handful of days took over a month. It is really important to never forget it will get better eventually.

[pberggren1]

Very good advice Rini!

[elephant]

Healing is a concern when you have surgery, but in my case I had no choice because my Wegeners was very active. I knew that my healing was going to take longer, than normal. I had a open lung surgery throught video. ( VATS).

[Alysia]

some more things:
1. do blood tests regularly, not less then once in a month.
2. find or "create" a team of docs for every "organ" infected. be sure they are available when it is an emergency.
3. listen to your body and be alert to symptoms. dont ignore them. dont wait too much when they are worsening. If you catch them early, it is easier to treat them.
4. dont do flu shot !
5. stay away from places full of germs etc. for example, if you need to do blood test come early when there are not yet a lot of sick people in the laboratory.
6. walk everyday or have some other sport regularly.
7. avoid stress if you can.
8. go to psychotherapy, if you can afford it.
9. eat only health food.
10. write in this forum :thumbup:

[BookNut]

Hi!! Can you tell me why you suggest not to have a flu shot. It looks as if I do not have WG after all - probably bronciectasis. I am concerned about your comment because I suspect my pulmy is going to suggest a yearly shot, because basically the only real treatment for bronchiectasis is to avoid infection. My PCP is dead set against fly shots. I will have to question her as to why she is so opposed. Anyway - I am interested in the topic.

[Alysia]

Hi!! Can you tell me why you suggest not to have a flu shot. .

Hi, if you have WG, flu shot can cause flaring.

[Dirty Don]

Hi, if you have WG, flu shot can cause flaring.

A flu shot with LIVE vaccine can cause flaring...don't want live virii in us! The kind most given at a doc's office are not of the live variety, but one should always ask. I had one this year, dead, no problems...no flu either. Sheesh! I wouldn't have a 'fly' shot either booknut!! Ducks as book flies by...LOL! I must love ducking too...OK OK, back to my coffee...sheesh...

[mishb]

some more things:
1. do blood tests regularly, not less then once in a month.
2. find or "create" a team of docs for every "organ" infected. be sure they are available when it is an emergency.
3. listen to your body and be alert to symptoms. dont ignore them. dont wait too much when they are worsening. If you catch them early, it is easier to treat them.
4. dont do flu shot !
5. stay away from places full of germs etc. for example, if you need to do blood test come early when there are not yet a lot of sick people in the laboratory.
6. walk everyday or have some other sport regularly.
7. avoid stress if you can.
8. go to psychotherapy, if you can afford it.
9. eat only health food.
10. write in this forum :thumbup:


That is a wonderful list Alysia.

No. 10 is the most important of them all :flapper:

[Wanda]

This is the best web site I have found to explain what tests need to be done and what they mean.

Wegener's-Tests (http://www.wegenersgranulomatosis.net/Vasculitis_and_WG_Tests.html)