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onatreetop
10-13-2009, 12:38 PM
I was diagnosed the end of June and began the meds asap. It has been a rollercoaster ride. But finally, after the monthes have gone by and I lost the energy of the teenager I had in the begining I have been looking for more answers.

I am forty-one and there has never been another case found in my family history. The levels the doc was hoping for are all there and good but I am still on all the meds. I was told that because it was found early that I wouldn't have to stay on the meds more than four monthes but.........I am still on and begining to feel the tired strain of 4 kids, 5 including the husband and the meds.
I have gotten some of the flow back into my hands and the other areas have not changed or progessed. So the meds are working. I am greatful that my very aggessive doctor did every test under the sun to find out I had this and not carpul tunnel or arthritis. My doc has only seen twelve people that have had this and eleven where to far along to help. All that he could try and do was make them comfortable. That was scary to hear.

Everything that I have read averages the meds at about a year? Then maintenance if ness.. Still go for blood work and catscans and mras , etc. and am starting to wonder how much radiation I can take in this short time? I still have my own small business and work it alone a few days a week.

Everyday is different but the same. Hoping for my energy to come back. :o

jola57
10-13-2009, 04:12 PM
Hi, and welcome. I am sure that by now you have been told that this little gift we all have is incurable. We can maintain our so called remissions for a short or long time. It all depends on how our bodies react, and we are all so different that each remission time is unique. I also have my own business, when diagnosed almost 3 years ago, I couldn't move without pain, it took a while before being fully diagonsed. I do however have a partner who carried the load if I needed to be away, which I honestly didn't take that many times. I could drive a car, walk the few feet to work and sit and type and answer phones and talk with clients. You will get better and be able to function in the new normal. It seems like you have limited involvment and that will carry for a long time hopefuly. after my first bout I was on chemo and steroids for 6 months, after being taken off within a month I was sliding fast and had a lung involvement. Onto cyclophosphamide again this time for 12 months and 60 mg of prednisone. I finished that 2 months ago and am now on methotrexate. I have taken very little time off work, have travelled and generally led similar life style as before, well with the exception that I stopped socializing and became more of a hermit which thankfully doesn't bother my husband and actually makes him glad. So so not worry just take each day as it comes and make the best of it.

Jack
10-13-2009, 09:35 PM
There can really be no prediction about how this disease will affect you or how long the medication may last, it affects everyone so differently. In my own case, I have been on quite heavy medication for 25 years, but that is not to say that I have not had some good times along the way. :)

Sangye
10-14-2009, 09:05 AM
You really need to get a Wegs specialist involved. If you need help with that, just ask. A doc who's only had 12 Weggies (and 11 of them died) just doesn't have the depth of experience you need. I can't help but wonder about those 11, if they really were too far gone, and why.

Everyone reacts to the drugs so differently. Even the same drug in the same person might be fine one time and disastrous another! Some folks here got stronger on the initial meds and got back to work within 4-5 months. Me, I got weaker and have had unending complications. Over 3 yrs and I'm still not able to work!

A lot of that has been due to not having a true Wegs specialist for 2.5 yrs. This is why it's my #1 Nag.

I've had about 30 CT scans, ~ 60 x-rays, ~10 MRIs in just over 3 years. Most of the radiation to my chest. (MRIs are not radiation) The CT scans are waaaay more radiation than an x-ray. I've had the equivalent of about 4 Hiroshima's in radiation. There's not much I can do about it, though. Again, a lot of that happened under the care of non-Wegs specialists. They are FAR more likely to order too many CT scans and put you on higher doses of drugs and the more toxic drugs. The Wegs specialists are really learning that more Weggies are dying of side-effects or damage from the treatments than from the disease itself. This is a very recent trend (ie, in the past 3 yrs), so non-Wegs specialists are not likely to know about it.

coffeelover
10-14-2009, 01:35 PM
That's it Jolanta! Hermits we become. Wegs we are!
That is the biggest change for me too.....all else remains the same
Glad I am not alone in hermitville

jola57
10-14-2009, 02:27 PM
Hermits unite Lisa. That is our new motto. I am still battling the bulge. How I hate this all around fat. I am back to 92 kg.

Jack
10-14-2009, 05:14 PM
My doc has only seen twelve people that have had this and eleven where to far along to help. All that he could try and do was make them comfortable. That was scary to hear.


That seems like a very poor record. The success rate in treating Wegs these days is way better than that and many people on this forum have been brought back from the brink with the correct medication.

Doug
10-15-2009, 01:02 AM
Yes, I concur. Eleven failures in 12.... Even random success would give your doctor a 50-50 chance of getting things right. I was so far gone when I finally had treatment that it took three hospitals and some heroic efforts to bring me back from the brink. Doctors at each of the first two levels (general, regional hospitals) were in contact with specialists at the final level (a university hospital with a rheumatology faculty well-versed in weggie treatment) throughout each of the first phases of my treatment, and that made all the difference.

Have we referred you yet to Front Page | Vasculitis Foundation (http://vasculitisfoundation.org) ? If not, shame on us! If you live in the US, Canada, England, Netherlands, or France (I recall- I may be wrong), they have contacts you can make who will sort out the matter of specialists in your area. )(Spain, Germany, Mexico, UK, and many other countries are represented in the list of resources. I checked just now.)

jola57
10-16-2009, 04:50 PM
Are you sure this number is right 11 out of 12? Everyone of us no matter how far along has been helped in one way or another, so to say that they couldn't be helped is just plain wrong.

Doug
10-17-2009, 02:23 PM
Are you sure this number is right 11 out of 12? Everyone of us no matter how far along has been helped in one way or another, so to say that they couldn't be helped is just plain wrong.

(And subject to review by the board of directors or whatever higher authority in the hospital investigates unusually mortality rates.):confused:

jola57
10-18-2009, 04:32 PM
Doug, I hope he meant that the doc just couldn't help them get better but not that they died???????????

Jack
10-18-2009, 06:27 PM
I read "make them comfortable" as "and then they died". After all, I'd give quite a lot right now to be made comfortable, but not dead! Sounds like a desireable condition from where I am. ;)

Doug
10-18-2009, 06:38 PM
That's what it sounds like on re-reading it, Jack. I'm having a difficult time grasping a doctor encountering 12 patients with a particular disease rare as WG, and all are beyond a point where nothing short of hospice-type care was indicated for them. Surely, among the 12, there were a few candidates for a competent doctor to help, through his network of fellow MDs and specialists and his quick attention to the patients' needs. I guess the main thing is the 13th weggie's among us, and we can help guide Nr. 13 to specialists familiar with WG or whatever it takes to, um.....!:D

Sangye
10-18-2009, 10:30 PM
I read it as hospice care, too. I still cringe every time I see it. There's just no way that many people arrived at the doctor's in such a state.

onatreetop
10-20-2009, 10:55 AM
He told me that they had had wg not knowing that that was what they had. Finally after being passed around a number of docs they saw him and were dxd and started treatment. He told me that a few where coughing up blood and progression had done the damage to the organs, etc. yeap, he scared the poop out of me when he said 11 of the 12 he had seen. My first reaction has RUN!!!!!!! But I stuck it out and glad I did. It takes two or three hours to see the man for an appointment but he was given me some of the meds for free and helped get me in to the urologist asap to take care of the stones. Saw him in two days and litho on the fifth day. Done. He does a lot for people that cant afford treatment. He has one of the largest fusion center in the US too. Hope I wont be in there for anything. There is a lab in his office too which is nice because they get the testing right, the way he wants. That and he is one of The Top Docs in the US. I can't complain. He made it stop for me. Now to keep it at bay?

onatreetop
10-20-2009, 11:57 AM
I almost forgot. My oldest son went for blood work today(14). cbc and wg testing just to make sure the strange rash on his back is stretch marks and not wg. I think because of the way he sits on his bed while playing video games actually made his skin stretch in in the very middle of his back. no where else. He is growing taller fast but why one side and not the other? I still think it is the way he curls his back when he is sitting. But just in case may family doc ordered the test. Did I mention the he is 6 '1 at forteen.

RCOSSIO
10-20-2009, 01:07 PM
Just curious has he been sued for malpractice...with such a high death rate I am wondering how this was not found to be suspicious.

jola57
10-20-2009, 04:05 PM
onatreetop, I guess you can ask how it was that 11 out of 12 died when this disease may not be curable but is so treatable,

Jack
10-20-2009, 05:04 PM
Coughing up blood is not so bad and many of us on here will have experienced it. Many were also in Intensive Care units by the time they were diagnosed. I myself could not walk when diagnosed and have had a kidney transplant and suffer from lung damage.

This is difficult, but treatable disease with a fairly low mortality rate these days.

onatreetop
10-21-2009, 10:21 AM
I am going to call the special WG for sure. And keep this RA on the side like a side dish yeah. And I will ask about the ratio and why because it is just flipping scary. As far as I know he has never been sued and is still packing in all kinds of new people. I am not sure how many offices he has either? But its time for me to google the DR.. I did make calls to get all my results from all 14 tests and all the labs. So off I go.
Had some good luck today even with the killer headache. I won tickets to a concert on the radio! I was the 104 caller and it was only the second time trying to win them. My daughter is really excited to see Lady GaGa. I hope she is old enough to get in. :o

jola57
10-27-2009, 04:59 PM
Congratulations on winning the tickets and have fun at the concert

onatreetop
10-28-2009, 09:57 PM
Will be interesting I am sure. Alone time with any of kids is a gift and hard to find. Something different to do. Beats sitting home cleaning up after everyone.

jola57
10-29-2009, 05:55 PM
Know what you mean, being out of the house in a neutral teritory is a blessing

onatreetop
10-30-2009, 02:42 PM
I ment seeing Lady GAGA preform. She is very dramatic and over the top lets say. It will be entertaining, REALLY!! I just hope it is approp. for my 12 year old daughter.