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View Full Version : New here! Diagnosed 1/08 Still rough!



extremenewenglander
01-30-2009, 04:54 AM
Happy to have found this forum. I was diagnosed Jan 08 with Wegener's thru kidney biopsy. They just barely found it in time and had about a 10% chance or so of making it. It started early Jan 08 with head cold symptoms,then within a week, the most severe, couldn't move, extremely painful muscle pain in hips, thighs, calfs, and arms. Jan 16 08 entered local hospital. Three days later I was in ICU with acute renal failure. I went from 145 lbs to 196lbs from fluid retention. Transfered to Dartmouth Jan 18 08. Massive testing, steroids, and chemo infusion brought it in control. By Jan 28 08 ( b-day present) was released with the whole boat load of meds and the crash course of insulin and lovenox injections. Prior to this I was the type that would pass out from a flu shot so it was a little nerving. Anyway.......the rest I am most surely aware that you all know what goes on for the unsuspecting battle!
I have had several flair ups thru out the year with my most previous on yesterday......(anual b-day present ironically) Incredible body pain and severe fatique and was treated and released. This flair up I guess was not the Wegeners' but a too rapid reduction in my prednisone levels.
So now it has been a year and a week or so since it all started and I am still on the battle field. I am just trying to have some light shed on me of how long does it go on? Kinda sick and tired of not being able to do much. Does it ever get back to normal???:eek: Thanks for listening! (reading)

Just finding my way around here so I hope nothing is redundant!!
extremenewenglander age 52 yesterday white male
carpenter by trade F.T.
musician/drummer/instuctor/P.T.
extensively active prior to illness
mountainbiking, hiking, downhill skiing,
snowshoeing, fishing, camping.

crackers
01-30-2009, 05:35 AM
welcome.
what a word that is "normal".i can remember normal but not how it felt.now i wake up in the morning and work out where i am on the scale of feeling rough.i'm two years into this now i had most of the symptoms you had,apart from the renal bit,but have recently gone backwards needing my pred levels to be raised to nearly what they were at the start.i was 54 when it started but was very fit and active.we'd go camping and hill walking in scotland now i'm waiting for a stairlift to be installed.i'm sure you'll read a lot more stories from fellow weggies,some like me with only 2 years, some with more than 20.there is no cure just varying degrees of refief i.e. good days and bad days.but everyone is different with this disease so you may be one of the lucky ones and the treatment has a really positive effect.hope so.
john

Jack
01-30-2009, 06:22 AM
"Normal?" I think you need to come to terms with the fact that you may not see that again, but you can become quite well. :)

I had all your symptoms over 20 years ago and ended up on dialysis and eventually had a transplant. It probably took 5 years to get my medication just right and stop the persistent flare ups and during this time I returned to hospital several times. However, I managed to keep working even though I had a lot of time off.

Since that time, I've only had the odd period away from work until the last few years when the accumulating problems (mostly due to medication side effects) have caught up with me and I've had to retire (I'm now 53).

extremenewenglander
01-30-2009, 08:40 AM
Many thanks for the responses! Well I guess normal is not going to happen........maybe......just be able to resume life somehow on a postive note. I get about 3 half good days a week randomly, however no warnings of when I'll have a good day, or when it turns or starts out bad. Makes auto travel and work nearly impossible. Can do chores around the home a few hours and that is about it. Is that the new norm???:confused:

crackers
01-30-2009, 10:58 AM
as i said before everyone is different but that's about it for me also.
john

Sangye
01-31-2009, 03:10 AM
Tough question! What's true for one person is not predictive for another. Wegs and the meds affect each of us completely differently. It's easy for us to read all these stories and feel hopeless or like we're doomed. Wegs is unpredictable. That can be good and bad, you know? :rolleyes:

As far as normal, I know. I struggle with wanting to "get back" to where I was-- very strong, fit, living life with vitality. That may come again, and it may not. Maybe something in between. My rheumy at JHU pegged it : "You'll never get your body back exactly the way it was. You have to let yourself grieve that. But you can be a lot better than you are now. I can't tell you how long that will take-- it's a very slow process. But I can tell you that it will happen."

It's good that you're here, though. This is a great place to find support as we all navigate these waters. :)

Doug
03-17-2009, 06:07 PM
Happy to have found this forum. I was diagnosed Jan 08 with Wegener's thru kidney biopsy. They just barely found it in time and had about a 10% chance or so of making it. It started early Jan 08 with head cold symptoms,then within a week, the most severe, couldn't move, extremely painful muscle pain in hips, thighs, calfs, and arms. Jan 16 08 entered local hospital. Three days later I was in ICU with acute renal failure. I went from 145 lbs to 196lbs from fluid retention. Transfered to Dartmouth Jan 18 08. Massive testing, steroids, and chemo infusion brought it in control. By Jan 28 08 ( b-day present) was released with the whole boat load of meds and the crash course of insulin and lovenox injections. Prior to this I was the type that would pass out from a flu shot so it was a little nerving. Anyway.......the rest I am most surely aware that you all know what goes on for the unsuspecting battle!
I have had several flair ups thru out the year with my most previous on yesterday......(anual b-day present ironically) Incredible body pain and severe fatique and was treated and released. This flair up I guess was not the Wegeners' but a too rapid reduction in my prednisone levels.
So now it has been a year and a week or so since it all started and I am still on the battle field. I am just trying to have some light shed on me of how long does it go on? Kinda sick and tired of not being able to do much. Does it ever get back to normal???:eek: Thanks for listening! (reading)

Just finding my way around here so I hope nothing is redundant!!
extremenewenglander age 52 yesterday white male
carpenter by trade F.T.
musician/drummer/instuctor/P.T.
extensively active prior to illness
mountainbiking, hiking, downhill skiing,
snowshoeing, fishing, camping.

Dear extrenewenglander- I'm just figuring this site out myself. I come to it as one of the people in remission. I don't recall having quite as severe a case of WG as you describe, but maybe I'm just putting a lot behind me! The Prednisone was my worst nightmare and the cause of the worst drug reactions. Like you, I have (had?) a severe form of WG, involving some renal failure. The lung issues cleared themselves up fairly fast with the Cytoxin/Prednisone treatment, but I can tell you it wasn't until I was sent to University Hospital in Denver that treatment of my disease started to turn my situation around. Drugs alone weren't dealing with the renal issues (creatinine levels and blood and blood cell casts in my urine persisted until mid-2005, I believe it was). In Denver I had dialysis for seven days, had a day off, had dialysis followed by plasma pheresis, then another day off, followed by one more set of dialysis and plasma pheresis. I asked my primary doctor (a pulmonologist) how I it was that I was selected for what is a somewhat experimental treatment. "You were very ill and medication wasn't bringing you back," he told me. "Oh!" At the time, I had no sense that I was one of Dr. Shedd's patients he felt might not survive. Ignorance is bliss, indeed! You don't mention cANCA testing. This antibody is thought by some doctors to be the possible agent responsible for WG. I can't speak to that, but I do know that I went from a sad case (I also ballooned up to 196 pounds from renal failure) who felt (literally) like death, suffered malaise among the other symptoms to a guy who, after all but the last dialysis-plasma pheresis treatment looked at a box of Kleenex and realized that he'd only used one tissue the whole previous day after months of blowing blood and snot into box after box of tissues: I felt I'd recovered to a point that, surely, a month more and I'd be through with blood tests and drugs. That was in January of 2004. Need I say that I still have doctor's appointments, but they went from every other week (sometimes more frequently if my urine tested out high on blood cell casts and creatinine, which they frequently did....) to once every six months. You will have several steps to the point you feel as good as I do today (I'm in remission, and have been for three or four years- frankly, I can't say for sure). Each of those steps I call the "new normal". (I notice others independently came to the same terminology!) You will note a theme in these responses to you and others: you don't get over WG, it isn't like a cancer or a cold where you fight it into submission and are done with it. Sangye characterizes the difference as one of fight vs. flow. You flow with the WG, reaching points you recognize as a "new normal" (they will be self evident to you, please believe me!). At each "new normal", you will feel just a bit more perky. With your past history of lots of physical activity, you may be tempted to push yourself. Please get your doctor's opinion on exercise or doing your old work. Some physical effort is good for you, but that's one of those up and down things you need pay attention to. Be at peace with yourself. Sounds corny, doesn't it, but I mean it. Find peace through your faith, if you are person of faith, or find it though whatever means works for you. I'm a Presbyterian elder, so I'm fighting giving you a "Jesus walk" talk. Haw! But do find that inner peace. You and WG are together for life. Accept it. Work with it. Go on the Internet to learn all you can about the disease. Take lots of questions to your doctor. Take control of your treatment. Question everything your doctor wants you to do, not to be obstructive, but to be well informed. Along with my faith, this willingness to work with my doctor to reach the best "new normal" my body was capable of at any given time helped me become more accepting of my condition. Follow your doctor's instructions diligently. Be at ease with death. Seriously. But work toward doing those things you love about life! A positive attitude will do you worlds of good!

extremenewenglander
03-17-2009, 11:51 PM
Many thanks for the support and responses! After all my research, readings, hospital stays and doctor visits, I pretty much realize the scope of the beast as much as a layman can. I am however, there will be more to learn and endure.
The new chapter at this time is being stabile at my prednisone level of 8mg. and Imuran being the replacement for cytoxin. It has only been four days since the switch so it is still early to tell if I may get "more" better days now. The past several months all my labs/testings have been superb with no signs of wg present. All the doc's remark how my blood condition/labs is very good and better than most even without wg. Got a great team up there at Dartmouth NH, some of the best I understand from the feedback from Vasculitis Foundation.
In response from Doug, thanks! All that you describe in your response I very much concur. Realizing, accepting, finding my own peace is happening on it's own naturally thankfully. My spiritualness and love for nature and my family helps me immensley, mentally and phsically. No need for anti depressants or other avenues to seek temporary euphoria.
Most of my health care doc's are superbly well informed in my case which brings me much comfort and confidence. However there is one fellowship doctor I have to pay attention too, I question his actions, much to his agitation, being sure it is not his lone decision/choices on particular matters. Well anyway....all is good for now and I am looking for more better days on Imuran.
With many thanks again, extremenewenglander.

Sangye
03-18-2009, 12:54 AM
Doug, that was so well-stated. Very helpful point of view.

Extremenewenglander, I'm so happy to hear how well you're doing! I hope you have only good days from this point on.

Regarding antidepressants : Many people believe they're "happy pills," in that they actually make you feel joyful, etc.... They don't work that way. They work by correcting a chemical imbalance, which brings the person back to normal. Weggies have direct experience with this, as Pred makes us agitated and/or depressed by creating a chemical imbalance. This improves as we decrease and stop the pred--we start to feel more like ourselves. Those imbalances can take years to wear off, if ever. Everyone's chemistry is different.

When you add the component of chronic illness--which acts as a chemical depressant to the body-- it makes it very difficult to unwind what's physical or mental. This is one of the hottest research topics in Neuropyschiatry--understanding the mind-body connection. They say a positive attitude is important but impossible if the chemistry is not there to support it. They also believe that therapy is a key component and can significantly decrease the use of antidepressants. The proof is that many people are eventually able to stop antidepressants, as the brain chemical balance often returns to normal over time.

JHU and Georgetown University co-sponsor the annual (?) Mind-Body Conference. I had a very interesting talk with the JHU head of Neuropsychiatry once. He said depression can cause gross neurological changes (eg. poor coordination, tremors, blurred vision) as well as cognitive changes (eg memory impairment, slowed thinking, difficulty finding words) He agreed that antidepressants are too often prescribed without thorough evaluation and follow-up, or co-treatment with therapy. And, family doctors should not be prescribing them, only psychiatrists.

Doug
03-18-2009, 08:00 AM
Sangye's comments on antidepressants were very interesting! I was fortunate enough to have a very strong support group, good brain chemistry (apparently!), faith, something, because I didn't go through any depression during my WG early days. http://www.wegeners-granulomatosis.com/forum/images/icons/icon11.gif Maybe I need to go back through the drug list to see if I had something "good" and didn't realize it! I do take two drugs now that typically are used for depression that serve to control my postherpetic trigeminal neuralgia. (PATIENT: "Doctor, if I can't pronounce it or spell it, I shouldn't be able to get it!" DOCTOR: "It doesn't work that way." :confused:) (I can't believe I'm using these dang Emoticons!) Just as Sangye says, they don't make you any more goofy than you normally are if they deal with a chemical imbalance in your brain. If you feel goofy on any drug, call your doctor and see if you can drop the drug or reduce dosage. Incidentally, in November 2007, I had an incident where I had the nurse at work check my blood pressure because I felt light headed: 80/55! The medication I'd been prescribed in January 2004 for high blood pressure brought on by the Cytoxon/Predinisone treatment finally served no purpose: my blood pressure without medication was normal again. My family doctor took me off the medication, and the fainting episodes stopped! Haw! Above, I advise EXTREMENEWENGLANDER to pay attention to his body and what it tells him (or something along that line), and I should have noted that this episode is what triggered that advice! Incidentally, has anyone ever tried to count up how many doctors and specialists they've seen in the course of their treatment? Scary, isn't it!