This is new to me.

[onatreetop]

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.

[jola57]

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]

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]

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]

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]

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]

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]

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 ? 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]

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]

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.)