Hey Al, newly diagnosed in Ohio.l

[nurse Bill]

It started out with neurogenic pain in my left foot which quiclkly evolved into swelling of both feet along with the purpuretic rash around both ankles. My doctor got me into a dermatologist who did biopsies of several of the lesions which came back as lymphocytoclastic vasculitis of my feet. Steroids were started after blood work showed an elevated crp and sed rate,with little relief of the pain. I was referred to a rheumotologist for further workup and my anca-c came back at 830. My new doctor had on my second visit a 4 page game plan for my treatment of the newly diagnosed wegener's which she shared with me,which included medications, lab work, and time frame for my treatment. when I was diagnosed it was a reality check for me because I have had pretty good health for a long time and it was very unnerving. I have since spent 4 days in the hospital receiving high dose iv steroids long with po cyclophosphamide and my blood pressure pills. In those 4 days I found that my lungs, kidneys and liver are involved and I met a very attentive nephrologist also. I was officially diagnosed with Wegener's on 9/2/2010 and so my journey begins.

[jola57]

Hi nurse Bill, sadly welcome to our forum. I am glad that you were diagnosed so quickly and started on the wonderful meds right away. Also glad that we get ot take this journey together.
Pretty soon we can all go on a cruise and fill up the whole ship

[marta]

Hey nurse Bill,

You have come to a good place from a not so good place. Your official date of diagnosis was on the birthday I thought I might not have when I went into the hospital in May, and here I am feeling relatively good (I don't want to jinx myself) with some great days and some strange days, but all in all so much better than my diagnosis date of May 09, 2010. I love Jolanta's plan to fill up a whole ship with Weggies and go on a cruise. Maybe we should pitch it to Oprah for her season finale... get all the good docs there too. Take care, stay strong, and you'll be feeling a change for the better soon, I think most, if not all of us did once the drugs hit our systems.

[eileenv]

Welcome to the group Bill, i am myself a fairly new member, but you will find on here a wealth of information and support from it's members. Glad you got such a quick diagnoses you like others on have a very bumpy rideat thr start, i hope now with the right medication you start to recover.

[Jack]

Hi Bill,
It is great that you got such a speedy diagnosis and have docs that seem to know what they are doing. It is good that they have a game plan in mind, but please remember that life with Wegener's is rarely predictable and the changes in direction can come thick and fast until things settle down.
You are now going to need quite a while to get to grips with your new condition so please ask any questions you may have or feel free to just have a rant at the world in general. We all do it from time to time and everyone will understand. ;)

[elephant]

Hi Nurse Bill, Welcome! I noticed you live in Ohio, do you go to Cleveland Clinic for your care. That is where my Wegeners Specialist ( Rheumatologist) is at, her name is Dr Carol Langford. I had this disease for over 30 years and in 2008 I was diagnosed with WG....miss diagnosed all those years. I had a kidney transplant in 1989, and a ton of surgerie after that. I think I am doing great despite the damage it has done to my body.
Bill are you a nurse? I am so glad you were diagnosed so soon, you will do well. :hug2::biggrin1:

[Geoff]

Hello Bill and welcome to our World Wide Brotherhood, Early days for you with regards to treatment and its true, as you say, that you will feel 'unerved' after years of sound health. Hopefully with continued good medical care (which you would appear to have) you will be able to adapt and get some normality back. Draw strength from this site with the courage and humour within. Keep us informed to your progress.:thumbup:

[JanW]

Welcome nurse Bill and feel free to ask any questions here. There are several healthcare professionals like yourself on here, and many newbies. I was diagnosed in January 2010 and had severe left foot pain as well (thankfully going away with methotrexate and PT).

[Psyborg]

Welcome Bill, I am also from Ohio and was diagnosed officially at the end of July. Not sure who you are seeing for treatment, but we have one of the best groups in the country at Cleveland Clinic, it's been worth the drive up from Columbus for me.

[Brooke]

Welcome Bill, you will find a lot of support, friends, thoughts, opinions, and much more on here! It is good that you were diagnosed so quickly so you can get the treatment right away. Hang in there!

[nurse Bill]

Thank you all for the encouragement. I am receiving my care through St. John's med center and UH and my Rheumatologist is Dr Donna Sexton-Cicero and she brought on board a nephrologist by the name of Wassim El-Hitti and the two of them inspsire a lot a of confidence of course for the time being I'm on a very short leash with all the labs and tests. I'm presently trying to get back to work at St. Vincent Charity Med Center at my second home in the Emergency Room where I'm NOT the patient. Again THANK YOU for the support. Bill

[Sangye]

Hi Nurse Bill, welcome to the group. It's good you were dx'ed quickly. I'm wondering what your liver involvement is about. Here's a thread for you to check out: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

[nurse Bill]

Thanks Sangye for the info will pass it on to my rheumatologist at my next appt. The Cleveland Clinic is only down the street from where I work.

[Sangye]

Wow, you'd be crazy not to go there.

[elephant]

Yea, you should go Nurse Bill. I have one of the best Wegeners Specialist at Cleveland Clinic....I am happy to go there and feel that I am being taken care of. :)

[Terri]

Today was my first visit at C.C. Wish it wasn't so far for me to go there all the time. Dr. Langford spent almost an hour just talking to me and listening to my "journey".
If I develop any difficulties I certainly would want to go back.

[Sangye]

I'm hugely relieved that you have that connection now, Terri.

[pberggren1]

Today was my first visit at C.C. Wish it wasn't so far for me to go there all the time. Dr. Langford spent almost an hour just talking to me and listening to my "journey".
If I develop any difficulties I certainly would want to go back.

I can certainly understand how hard it must have been for you to travel that far. but like Sangye said that connection you have now with Dr. Langford can be priceless. I hope you had a good appointment with her and were able to communicate with her flowingly and that she completely understands you. I have heard many good things about Dr. Langford like that she listens and is compassionate.

[Terri]

Yes , very much so. She is very compassionate and I mentioned it was an honor for me to meet her and have her concult with me and she acted a little shy about that as to not take the credit. I truly enjoyed my visit with her.

[pberggren1]

I'm so glad for you Terri. I hope this is the beginning of a long and beautiful relationship.

[Terri]

Thanks Phil. That should have been consult not concult...LOL

[LisaMarie]

welcome to the group ....i am newly diagnosis to and a nurse and not liking the roller coaster ride but it is what it is....this group is full of info and support

[elephant]

Terri, glad it went well...I too see Dr Langford. I feel your pain about the driving. I think I will take the kids next time and make it into a little family vacation. I am so glad that I have that connection too.

[nurse Bill]

It's difficult changing the gears from nurse to patient. Thanks for the seed! Bill

[Doug]

Bill ~ You will become a better nurse for the experience. For myself, I came away from all the hospitals with a profound sense of the dedication it takes for someone to be in your profession. You guys are the greatest people on earth. I couldn't do it.

[marta]

Ditto on what Doug said.

[nurse Bill]

Thanks Doug and Marta for the vote of confidence. Quick question, with vasculitis in both lower legs/feet do support hose help with maintaining blood flow back to the core or do they further hinder the flow due to the inflamed vasculature? Bill

[elephant]

Bill I remember Sangye talking about this...I can't remember what she said...:confused1::sad:

[Sangye]

Bill, what do you mean by vasculitis in both legs? I'm concerned you have clots.

[nurse Bill]

Sangye, the first test done was a venous duplex and that was negative for any clots. then i presented with leukocytoclastic vasculitis in both feet about 3 days later. Now I have the associated dependent edema with it. I was just wondering if support hose would help or exascorbate the problem?

[Sangye]

When I was first dx'ed and admitted with pulmonary hemorrhage, I developed huge numbers of clots on the 3rd day of 1,000 mg IV solumedrol. I knew it was clots as my calves instantly went into tetany, but the doppler ultrasound was negative. The pain continued and worsened. My docs didn't believe me and I was discharged with it and told to take magnesium and walk around as much as possible. I was extremely weak at that point, which probably saved my life. A whopping 3 weeks later, after increasing pain, weakness, shortness of breath, and an indescribable feeling of something very wrong, I headed to my pulmonologist. My lungs sounded clear and my O2 sat (at high altitude) was 100%. But I couldn't breathe. He ordered a chest CT with PE protocol and it was discovered that my lungs were packed with clots. They were still bleeding, so going on anticoagulants was dicey.

Since then, I've learned from ultrasound techs that it can take awhile for clots to "organize" enough to be visible on US. I suggest you get a repeat US as soon as possible. You should also know that Weggies are 23% more likely to develop DVT. Your docs probably don't know this. It was the result of the WeCLOT study. Any Weggie with unexplained lower extremity edema should be checked for clots. Don't let your docs tell you it can't happen if you're on high-dose pred. It happens all the time.

If it's not clots, it sounds like you just have the vasculitis rash on your feet and legs. That's very common and indicates the Wegs is generally active. (I had that also. That's actually what we biopsied to demonstrate Wegs, as it was too risky to biopsy my lungs.) Swelling of the lower extremities is very common with Wegs, even without the rash. It's one of the symptoms that we Weggies all know about, but even the Wegs specialists seem to give it very little weight. Both the rash and swelling should improve as the drugs kick in.

I don't see how support hose would help in your case, since they mobilize blood that's pooling in the veins. You run the risk of pushing fluid into the rash and causing vasculitic ulcers. That happened to me and is a nightmare you really want to avoid.

[nurse Bill]

Thanks for the info,My nephrologist put me on daily lasix and suggested support hose to help with the 3+ lower leg edema. I will be monitoring the swelling very closely and see my Rheumy in 10 days. If no improvement in 7 days I will notify both of them and ask for a venous duplex for clots. I'm still learning about wg and it's incidious symptomology.

[Sangye]

The other factor that contributes to lower extremity edema is adrenal depletion caused by pred plus the other drugs and Wegs in general. It's a major factor in my case and has gotten out of hand since I had to go back on high-dose pred to treat acute hearing loss. Even as I'm lowering the pred (down to 7mg now) the edema is still much worse than before. Pred beats up the adrenals pretty bad.

[Doug]

I don't miss having feet the size of cured hams with five plump bratwursts lined up on the end of each one. I especially thank you, Sangye, for your explanations of the effects of adrenal depletion. I was unaware of the causes of various weggie vicissitudes until you started describing them.

[elephant]

I second the thanks too!