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Thoughtgraff
04-20-2010, 01:25 AM
Hello everyone. Glad to be a part of your community.

I most likely had Wegener's for over 3 years before I was diagnosed. In 2006 I had horrible arthritic pain in my feet for about a month in a half while in my last year of college. I was 27 at the time. I blamed it on bad shoes and went on with my life. Over the next three years I'd experience on again/ off again joint pain, but not to any severe degree. then in 2007 I started to develop what would turn out to be a perforated septum. I thought it was just allergies. I've had sinus problems my whole life. I knew I should see and ENT, but kept putting it off. Later in September of 2009 that arthritic pain returned in my feet, which i self diagnosed as plantar fascitis.

That December on a short flight from LA to Sacramento to visit my parents for Christmas I experienced extreme pain in my left ear which didn't stop when the flight was over. My ear continued to hurt over the next few days. The pain enveloped the left side of my face. I suspected it was a middle ear infection. I suffered through Christmas then saw an ENT in Sacramento who gave me some antibiotic drops and sent me on my merry way. My ear started getting better but now I was experiencing extreme all-over joint and skeletal pain. I thought it might be related to my spine so I saw a chiropractor, but the treatments actually seemed to increase my pain. I was near bed ridden in no time and began coughing up bloody sputum. I thought it was influenza so I went to see a general practitioner. She had no idea what was going on, but thought she should call an ambulance and get me to the nearest ER. I decided I would drive to UC Davis Medical Center because they have one of the best ERs in California. I'm glad I did because it saved my life.

At this point my story is pretty similar to other WG patients. I was short of breath and near continually coughing when I got to the ER on Jan 1. After strange x-ray results and revealing CT scan I was admitted to the hospital. I presented rashes and lesions all over my extremities over the next few days. I saw every specialist in the UC Davis system as they tried to diagnose me. After almost a week of tests my lungs were severely hemorrhaging. Because the tissue of the lungs was so inflamed the pulmonologists were unable to do a biopsy of my lungs. My sinus biopsy returned inconclusive. But I was clearly going to die if something wasn't done. The pulmonologists made their best guess and began treatment for WG.

My symptoms immediately retarded once I received a gram of solu-medrol. However there were complications due to intubation. The tube basically created a porthole for infection and I contracted pneumonia in my right lung. The pneumonia was near my heart and the inflammation created pooling around the heart itself. My blood vessels were leaky and the fluid had no where to go causing my blood pressure to drop to near 0. If not for the quick thinking of the MICU attending doctor I would have died. I was infused with something like 6 liters of saline causing severe edema but int the process the pressure in my body was stabilized. I was sedated with morphine for about 2 weeks.

I awoke in the MICU on Jan 22 with a tube down my throat having no idea what had transpired. I had lost 30lbs and could not walk. After another week in the MICU the intubation tube was removed and I was able to get out of bed with limited mobility. Soon after I was moved to a fast-track room where 3 days later I was discharged.

I've been home now for a little over 3 months (obviously) and doing much, much better. I am very, very lucky. A week out of the hospital and I was up and walking without the walker in spite of the 100mg of prednisone I was taking daily. When I saw my pulmonologist, Dr. Kenyan, my x-rays showed my lungs to be nearly healed. There were no signs of granulomas, only some slight scar tissue. My oxygen saturation was at 98%, which was very encouraging, and I had no pain when taking a deep breath. I've taken four doses of cytoxan so far. I seem to respond well to the drugs. Fortunately for me there was only some slight presentation in my kidneys. My creatinine level was 0.65 when I entered the hospital but rose to 1.3 by the time I was discharged. However, I was given large amounts of broad spectrum antibiotics and pain killers while in the hospital, so that's to be expected I suppose.

I'm currently taking these meds:
1500mg monthly cytoxan infusions.
60mg daily prednisone.
100mg daily dapsone.
50mg daily linsinopri.
weekly I take fosamax.

I also take these supplements:
Calcium and vitamin D three times a day.
2 IUs of vitamin D3.
600mg of magnesium in powdered form.

Since being discharged I placed myself voluntarily on a very strict diet to counteract a lot of the GI problems that are associated with both prednisone and cytoxan. I don't eat any dairy, eggs, grains, legumes, night shade plants, or sugar. I also stay away from starchy tubars like sweet potatoes. I drink about a gallon of water a day and about 2 when I take my cytoxan treatments. Because of this I haven't experienced the severe weight gain many report while on prednisone. Avoiding the glucose from eating starchy and dense carbohydrate foods like potatoes and bread has kept my blood sugar relatively low around 86-90, so I don't think I'll have to worry about induced diabetes.

There's another reason for the strict diet. While doing research on the subject of autoimmune diseases my brother and I came upon new research into the connection between diet and autoimmune disease. Currently most doctors and WG specialists don't see diet as having anything to do with WG. However there have been several studies that show that both MS and rheumatoid arthritis can be put into remission through diet alone. And, seeing as the underlying disease process that causes the inflammation to occur in all autoimmune diseases are essentially the same, it follows that diet could have a similar impact on WG patients. Here's a pretty informative lecture on this topic by Dr. Loren Cordain - The Paleo Diet and Multiple Sclerosis (MS) (http://bit.ly/8XiCgz)

Well that's my story so far. I turned 31 in February and I'm greatfull for everyday I get to be here. I hope to be a valuable member to the WG community at large and am excited to have other people with WG to converse with. Take care and good health to you all.

JanW
04-20-2010, 01:33 AM
Hello and welcome to our group. I, like you, have foot issues and have also had issues with my throat and my nose. You will find wonderful people here who can help with almost any problem.

Sangye
04-20-2010, 02:11 AM
Hi Thoughtgraff-- welcome to the group. You sure experienced a lot in a short time. I hope things keep improving for you.

A couple things: Even though things are going in the right direction, it's still important to get a Wegs specialist on your team. Wegs is seldom straightforward and any deviation from the textbook makes it impossible for a regular rheumy to treat. You had a lot of complications in the hospital, but all of them were non-Wegs related. It's hardest to get people to look for a Wegs doc when things are going well. But that's the best time. You might not have a crisis that requires one, but many of the decisions made by regular rheumys about dosage, length of treatment, etc... are best made by those who know the disease and its long-term implications well.

I'm also wondering why they put you on Fosamax. Some docs do it routinely as soon as you go on pred, but it's quite irresponsible. Many docs would never do that. The drug has some serious side effects and potential for future problems. I'm wondering why you're still on such high doses of pred (60mg). Usually they would have tapered it by now if things are stabilizing. This is something only a Wegs specialist should be determining.

Bravo for you drinking a lot of water. I think 1 gallon is going way too far, though. And 2 gallons, whoa--really not good. Too much water dilutes stomach acid and intestinal enzymes and affects electrolyte levels. It also causes hypertension. So much water may be flushing drugs out of you too quickly for them to work and is certainly flushing out water-soluble vitamins.

There's no magic bullet diet that helps everyone, but if the Paleo diet works for you, that's terrific. :)

Thoughtgraff
04-20-2010, 03:46 AM
Hi Sangye, thanks for the reply. My rheumatologist is actually quite experienced with WG and so is my pulmonologist. Obviously the rheumatologist is handling my treatment. Both of these doctors treated me while in the hospital and have an intimate knowledge of my history. I have good relations with all of my Doctors and receive frequent calls from them, nearly weekly. They are all a part of the UC Davis Medical Center system. As to your question about the high dose of prednisone, I was actually quickly tapered to 60mg and then held there for about 2 months now because of a concern that WG was actively presenting in my kidneys when my creatinine level spiked to 2.5. I was pulsed with 1500mg of solu-medrol over 3 days and my levels returned to 1.44. A month later and the creatinine rose again to 1.7 and I was given a gram of solu-medrol and levels again returned to 1.44. My reuhmatologist was concerned that he may have tapered me to fast and so now has cauciously held me at 60mg till I had a couple more cytoxan infusions. Both linsopril and bactrum have a side effect of raising creatinine levels falsely, which has both my reuhmatologist and nephrologist scratching their collective heads as to the actual cause of the creatinine fluctuations. My recent blood work does not show active inflamation and my nephrologist feels that the kidneys are healing at this point. This Friday I'm scheduled to go down to 50mg of prednisone.

As to the question of fosamax. Studies I've read show that the combination of calcium supplements in conjunction with fosamax is the most effective way to combat osteoperosis. And, also the risk of osteoperosis induced via corticosteroids is highest while taking the highest dosages, so this would seem like the best time to take it. I'm well aware of the side effects of fosamax but I feel that the benefits outweigh the risks.

As to a gallon of water a day, well that's only 64 oz over usually an 18 hour period for me. I was told that's about exactly what anyone on prednisone should be drinking in a given day. Also I should mention I don't drink purely water to fullfill this fluid requirement but supplement with coconut juice (for electrolytes) and herbal teas. Two gallons of water on cytoxan days is probably a bit of an exageration. I try to drink about one 16 oz glass of water every 2 hours to flush the cytoxan out of my bladder since I don't take the mesna prophylactic. Obviously there's a high risk of bladder cancer and or bladder hemorrhaging.

Sangye
04-20-2010, 04:37 AM
I hope your doc knows Wegs very well. The VF docs literally have hundreds of patients with Wegs. I was treated at Mayo Arizona for awhile (not a vasculitis center). The rheumy knew Wegs much better than typical rheumys, but the fact that he wasn't a Wegs specialist cost me dearly.

Use an online converter to calculate ounces per gallon, etc... Sixty four ounces equals about 1/2 gallon. Most docs recommend drinking about 2 liters while on ctx. (2 liters= 1/2 gallon = 68 oz)

Why aren't you taking the mesna? I've heard it's extremely important with IV ctx. I only took oral, so I'm going by what the Wegs specialists have told their patients.

elephant
04-20-2010, 08:25 AM
Hi thoughtgraff, boy you have been through hell and back. So glad you made it here. As you know some of us including myself like to nag and ask nagging questions....but I am really here to support too. I have a couple of questions. My Rheumy says that they found taking the cytoxan pill is more effective than monthly cytoxan. Another thing is that prednisone won't control your wegeners, it sounds like you are still having active Wegeners. I was told recently by my Rhuemy that " you need to increase the other immunsuppressive drugs to get the wegeners in remission....she wants to decrease and get me off Prednisone quickly. Mabey the IV cytoxan is not enough to knock the Wegeners down.
You must feel a loyalty to these doctors who saved your life, and I know it must be hard to kinda " hurt their feelings." I would definitely see a WG specialist, even if you see one once a year. I live in South Carolina and drive to the cleveland clinic and see Dr Langford. I felt so much better, even thought I love my local Rhuemy....it's just that they see WG daily and are on top of the newest research ( they are involved with) and medicines......
I am so glad you are here and I have been through so much for over 30 years and don't want anyone on here to go through anymore crap!!!

Sangye
04-20-2010, 08:54 AM
I agree with everything Elephant said. Oral ctx is definitely more effective than IV. Like she said, non-Wegs docs often use pred as the main engine when the main one controlling the Wegs is the immunosuppressant. Even though I didn't know anything about VF or Wegs docs until 2.5 years into this, I felt a loyalty to the pulmy who diagnosed it and saved my life. Unfortunately, pulmys are not equipped to oversee our care--that has to come from a rheumy. While I loved my pulmy, he was quickly in over his head when complications arose. The rheumy was awful and also out of his league! Like Elephant, I'll do anything to keep others from going through what I have.

Thoughtgraff
04-20-2010, 01:24 PM
Wow I was way off about the gallon to oz! Shame on me :D I found out today that UC Davis has a vasculitis center so I'm looking into finding a specialist. My rheumatologist mentioned in a recent appointment that he may move me on to oral cytoxan for the reasons you mentioned, but I also have heard that it's far more toxic, which I guess is the point. I realize that prednisone isn't what will put me into chemical remission, but the consensus was that it was keeping the kidney inflammation in check till the cytoxan took hold. We almost went with a double dose of cytoxan this month, but I'm in the process of having some sperm frozen so we decided to wait for now. If I'm remembering correctly, my rheumatologist's clinic is currently treating over 20 wegener's patients. For the most part I feel pretty reassured because my doctors laid out a plan for treatment which seems to line up with most of what I'm reading in these forums. Anyways, thanks for all the advice it's very much appreciated!

pwc51
04-22-2010, 08:15 AM
Hello Thoughtgraff - it is fascinating that the first couple of paragraphs describing the onset of your condition are so similar to mine. A few foot aches that I ignored then a flight where my left ear became painful and never went away. As I was flying again shortly afterwards I went to my doctor and we thought it was wax in the ear. Carried on with the other flights and got home to continue treatment. However the pain never really relieved and I was going deaf. In addition I could not climb stairs without getting short of breath. I then had excruciating joint pain and collapsed into bed before being hospitalised.

Five days in hospital with the usual massive steriod infusion followed by 60mg Pred (now down to 7.5) and cyclosphosphamide for 5 months (now methatrexate 20mg per week) have stabilised things. Just done my first flights to the US since diagnosis last July. Just returned today having been delayed by the volcanic ash - lucky as I was running out of meds!

Sangye
04-22-2010, 08:25 AM
Wow, I'm so glad you made it home before you ran out! (You don't want to know what it would have cost you in doctor visit and drugs to have it corrected here.)

Good lesson for all, though-- take LOTS of extra meds when traveling, just in case.

pwc51
04-22-2010, 10:09 PM
Hi Sangye - I was due to be in the US for 4 days. I had taken 11 days of Meds to allow for delays (a missed connection) but could never have predicted the volcanic situation. Until Tuesday the earliest I could get a flight was next week so had already visited a doctor, with all the associated expense, to get prescriptions for the additional meds plus an associated blood test at my doctor's recommendation. Never got to present the prescriptions at a pharmacy so did not incur all the additional costs!

Sangye
04-22-2010, 11:54 PM
The part that really upsets me is that Americans who were trapped in the UK in need of medication or treatment were given temporary resident status so they could get it for free or almost free. It's shameful that we don't reciprocate. Even Canadians don't visit the US without getting travel insurance in case they need medical care. But we go hopping across the border without worry. :mad: