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Becky
01-12-2015, 05:12 AM
I thought I would update from my last post on Dec 4th. I had just gotten the results of the TPMP test.
I started Imuran on December 15th. I stopped Imuran on December 18th.
I had gotten a rash in August that progressively got worst until October at which time I was sent to a dermatologist. She did a biopsy and said it was either an allergic reaction or eczema. She also said it has nothing to do with Vasculitis. I was give a prescription of Hydroxyzine for it and also Betaderm cream 1%. This helped but the rash did not totally go away.
So this rash was still slightly present when I started Imuran. Within 2 days on Imuran I had a rash from head to toe. I called Doctors office and spoke with her assistant and was told to stop the Imuran immediately and take Benadryl about every 6 - 8 hours until the rash goes away. I did this at first and slept quite a bit. The rash subsided some and I stopped taking the Benadryl except at night. I did not want to sleep the Holiday Season away. But I still have somewhat of a rash and am so itchy sometimes that it almost drives me crazy. I also have such dry scalp that when I scratch it seems like a snow storm (heaven knows we have enough snow here I don't need to contribute to it-haha).
Is a rash part of Vasculitis? I have asked my Doctor this several times and she keeps saying NO! But I have seen mentioned on this forum things about rashes. If a rash is linked to Vasculitis how does it present itself? What does it look like? How is it treated? I need some relief from this.
Also, the Doctor has now suggest she wants me to take Cellcept but not until the rash is gone away and the Imuran is out of my system. I only took Imuran for 2 days @ 50 mg per day. She said it will take about 2 months for it to leave my system. Do you think it would take that long?

Dirty Don
01-12-2015, 05:16 AM
Obviously you're flaring, and the Immuran isn't doing the job...ask about using Rituxan at this point. There may be traces of Immuran in your blood for months, but as for it being affective after a week or so, I seriously doubt it. I would ask for another opinion - maybe someone on here has had that experience with Immuran. Best to you.

mrtmeo
01-12-2015, 09:22 AM
It sure sounds like an allergic reaction if it is itchy.
The rash my mom gets, from vasculitis, is not itchy nor raised looks like this

http://neuromuscular.wustl.edu/pics/people/patients/Hands/slerashhpsm.jpg

annekat
01-12-2015, 11:08 AM
I just get a few red dots now and then on my forearms, which I know are WG related, because they happen when I'm tapering pred, flaring, or under a lot of stress. The rash of Blake's mom pictured above looks like what I've seen on various sites about vasculitis. The small red dots of hers look just like my red dots, only I usually just have maybe 3 or 4 of them at the most. They don't itch. There could be other kinds of vasculitis rashes, which might look different, but the itching doesn't sound typical. I'd agree that it sounds more like an allergic reaction. Although Don could be right that is is connected to a flare. It sounds like the Imuran was a problem but that your doc doesn't have full understanding of it, and that if you are flaring, you should be on an immunosuppressant. Waiting 2 months sounds excessive. I've been on two immunosuppressants at once while transitioning between them and don't see the big deal. But then I know nothing about Imuran. If it is possible to get a second opinion, or to find a more experienced doc, that might be a good idea.

mrtmeo
01-12-2015, 12:35 PM
I just get a few red dots now and then on my forearms, which I know are WG related, because they happen when I'm tapering pred, flaring, or under a lot of stress. The rash of Blake's mom pictured above looks like what I've seen on various sites about vasculitis. The small red dots of hers look just like my red dots, only I usually just have maybe 3 or 4 of them at the most. They don't itch. There could be other kinds of vasculitis rashes, which might look different, but the itching doesn't sound typical. I'd agree that it sounds more like an allergic reaction. Although Don could be right that is is connected to a flare. It sounds like the Imuran was a problem but that your doc doesn't have full understanding of it, and that if you are flaring, you should be on an immunosuppressant. Waiting 2 months sounds excessive. I've been on two immunosuppressants at once while transitioning between them and don't see the big deal. But then I know nothing about Imuran. If it is possible to get a second opinion, or to find a more experienced doc, that might be a good idea.

That picture of vasculitis rash is from the net and not my mom.
My mom only gets a couple small spots once in a great while.

annekat
01-12-2015, 01:54 PM
That picture of vasculitis rash is from the net and not my mom.
My mom only gets a couple small spots once in a great while. Oh! Well, I'm glad your mom doesn't get an extreme rash like that. It sounds like what she gets is more like mine, a couple spots once in awhile.

mrtmeo
01-12-2015, 02:07 PM
Oh! Well, I'm glad your mom doesn't get an extreme rash like that. It sounds like what she gets is more like mine, a couple spots once in awhile.

That's what is so scary about the net when looking up diseases.
The pictures they show are so severe.

annekat
01-12-2015, 02:14 PM
That's what is so scary about the net when looking up diseases.
The pictures they show are so severe. I guess it's good to know how it can get in some cases. That way, we realize we are not as bad off, and have compassion for those who do get it that bad. But I agree, not only the pictures, but some of statements made about survival statistics and such, are a little over the top, and would be pretty scary to a new person. That's what's good about the forum; it puts things in perspective a little better.

mrtmeo
01-12-2015, 02:34 PM
I guess it's good to know how it can get in some cases. That way, we realize we are not as bad off, and have compassion for those who do get it that bad. But I agree, not only the pictures, but some of statements made about survival statistics and such, are a little over the top, and would be pretty scary to a new person. That's what's good about the forum; it puts things in perspective a little better.

Absolutely!
There is no info better than others experiences.
I have seen so much greater accuracy with other's experiences and far less accuracy from clinical trials.

Becky
01-12-2015, 03:19 PM
Don - I agree that I need a second opinion or a Doctor who is more knowledgeable about Vasculitis. I actually insisted on this the last time I spoke with my Doctor and she has referred to a rheumatologist who specializes in Vasculitis. I am waiting for an appointment. As far as Rituxan - from what I understand it is difficult to be prescribed that and very expensive in Canada. And, she said she does not want to give me the "BIG Medications" incase I get really sick and need them and then they may not work. Something to look forward to I guess!
mttmeo - my rash does not look like that. It is a really fine slightly raised rash that is very very itchy!
Anne - as I said I am waiting for an appointment with a rheumatologist who has experience with Vasculitis. I have also asked my Doctor to consult with one of the Doctors on the Vasculitis Organization's website but was refused.

it is very frustrating and stressful going through this without the support of my Doctors. I am thankful I found this forum!

mrtmeo
01-12-2015, 03:56 PM
Hi Becky,
If the rash is raised, it sounds like hives which is an allergic reaction.
Antihistamines and I think prednisone when they are really bad.

I would bet the dr doesn't want to use an immune suppressant while you have that reaction.
They always stop them when we get some kind of infection.
My mom got a rash from bactrum, but she was only on prednisone at the time.

I didn't know there was an accumulated toxicity with repeat treatments of rtx as long as they are, at least, 4 months apart?

As far as how long to wait before changing from one maintenance drug to another, 2 months sure seems a long time without immune suppressant coverage.
My mom's dr didn't have her wait that long to switch from imuran to mofetil, but maybe there could be some kind of interactions.
I know you cannot take imuran with mofetil at the same time due to interactions.
It sure would be nice to have some coverage while you wait even if it is just prednisone.

I hope everything works out well.

annekat
01-12-2015, 04:34 PM
The hives I had were a little different than what you describe; they were raised but more blotchy and larger shapes, not "fine". But there could be different kinds of hives. A simple thing you could try is some hydrocortisone cream from the drug store, used for insect bites, poison oak, and such. If it helps, you'll know it's an allergic reaction. I've had luck with it in the past with weird rashes, but can't say for sure it would be strong enough in all cases.

I also don't remember hearing about RTX "not working" after repeated treatments, or about accumulated toxicity. The cost factor could be another reason they want to try other things first. I don't remember what all your WG involvements are or how severe a case you have. Cellcept might work if Imuran doesn't, and there's also methotrexate, which works fine for me, after initially having the "big gun", CTX, in the more severe stages. I also don't know if that has been ruled out. It is the main one I've heard of as having accumulated toxicity, and thus I think I've reached my lifetime quota and would need RTX if I get really sick again. It is a good one to avoid, but it can knock WG down pretty quickly so you shouldn't need to be on it too long. I was on it too long, but not as long as some. Too late, no going back now. In any case, I hope that the rash gets resolved and they get you on something that will bring down your overall disease activity. I hope whatever new doc you end up with will have some better solutions.

Becky
01-12-2015, 05:43 PM
I am on 25 mgs of prednisone but am experiencing some of the complications of taking higher doses for long period of time - high blood pressure and diabetics. For this reason I really need to get off prednisone.
I will post links for my introduction to forum and the one other post I put on here. It will explain what has been going on with me.
in August when rash first appeared I did not start any new medication nor did I in October when it got really bad. It is very confusing.

http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4446-hello-calgary-alberta-canada.html

http://www.wegeners-granulomatosis.com/forum/medication/4503-tpmt-results.html#post92925

annekat
01-12-2015, 07:02 PM
Thanks, Becky... I could have found your introductory threads myself and not made you have to post the links. I see where I responded, too... how short my memory is. So, you do have lung involvement, which is pretty serious, as did I in addition to the sinus and ear involvement. I feel I have a less severe case of Wegs than many, but don't know if it could have been called mild at the time of dx, when the lung issues had taken hold, which sort of took it out of the "mild" realm. It called for a heavy hitter such as CTX or RTX. Although I know of some who've done well with MTX for moderate lung issues. In any case, I know I did talk about my use of CTX in that intro thread, and the fact that I'm glad I used it, because it worked so well, and quickly. It works faster than RTX. I don't know why my doc kept me on it so long and didn't switch me to MTX sooner. I don't know how your lungs are doing currently, but wanted to assure you that the side effects were not that troubling, at least for me. The immediate ones of mild nausea and dizziness I got over within a couple weeks with plenty of bed rest. The long term ones of possible bladder cancer are dealt with by drinking LOTS of water, and I've seldom heard of people ending up with bladder cancer. Maybe one on here I've seen in 3.5 years. All of our meds have side effects and dangers. Not trying to talk you into it, but thinking with lung involvement you might do better with either that or RTX. All that has been discussed, though, and I'm looking forward to hearing about you getting with a vasculitis specialist and what is decided. The above assurances about CTX were just in case they want to go that route and get you to agree. Good luck with all of it and I hope you can get rid of the rash soon, as well.

acker
01-13-2015, 03:29 AM
Hi Becky, my Vasculitius started with a rash on my ankle and ever since I came out of my 5 week stay in hospital I get little flare-ups of rashes. Also like you dry skin on my face and head, as I never had these things before I just put it to the old Vas.
Some doctors are not that good at sorting it out, if I was you, I would look around for a doctor who is a specialist in this field.
I'm very lucky myself as there is a unit fairly near to me, so I have had perfect care from the word go.
Acker :hug3:

mrtmeo
01-13-2015, 03:47 AM
Hi Becky,
I agree with everything Anne says.
Ground glass opacities in the lungs is capillaritis (bleeding from the capillaries) and is very dangerous if active.
It can cause coughing up blood as diffuse alveolar haemorrhage.
If it turns to scar tissue, there is no getting it reversed.

I have seen in the literature both ctx and rtx resolving the opacities, but it has to be treated before the scar tissue develops.
I see no reason with all your sx's that they can't use the rtx.
In the USA, they used to require that you take ctx first, and if it doesn't work, you can try rtx, but now it is FDA approved for wegs.

annekat
01-13-2015, 06:02 AM
Blake, just as a point of interest, my dx was in 2011 right around the time that RTX was approved by the FDA for WG, actually right before, I think. So it was right on the cusp of docs going for it first for the more severe cases. My doc went for CTX because it was quick and to the point and because I had very basic state-sponsored insurance for low-income, and they most certainly wouldn't have covered it, and any other process for getting it covered would have been time-consuming. I'm happy with the choice that was made.

My lungs were said to have "cavitary lesions" after the lung CT scan I got. Ground glass opacities weren't mentioned, but I imagine they were there. You know docs, they don't always go into a lot of detail. Now, my lungs are the least of my concern, but I'm aware there is still scarring in them which couldn't be cleared up by the meds. It must be pretty moderate, as it doesn't affect my daily activities much at all.

mrtmeo
01-13-2015, 07:32 AM
Blake, just as a point of interest, my dx was in 2011 right around the time that RTX was approved by the FDA for WG, actually right before, I think. So it was right on the cusp of docs going for it first for the more severe cases. My doc went for CTX because it was quick and to the point and because I had very basic state-sponsored insurance for low-income, and they most certainly wouldn't have covered it, and any other process for getting it covered would have been time-consuming. I'm happy with the choice that was made.

My lungs were said to have "cavitary lesions" after the lung CT scan I got. Ground glass opacities weren't mentioned, but I imagine they were there. You know docs, they don't always go into a lot of detail. Now, my lungs are the least of my concern, but I'm aware there is still scarring in them which couldn't be cleared up by the meds. It must be pretty moderate, as it doesn't affect my daily activities much at all.

Anne,
I read all my mom's scan reports and blood work because drs fail to mention them.
They would just tell her that her blood work is stable, for years.
I asked many drs what ground glass opacities were and what causes them.
They all gave a non specific I don't know answer.
It is ridiculous that we as patients need to learn this stuff to help ourselves.

jakekell
01-19-2015, 01:30 AM
Becky,

Pre dx I was covered from head to toe with large hives, went on for about six months that was the start of my world changing. My first rhemy told me that was my body going wacky. I still get hives off/on, however never that big flare that I first had. I agree with many on hear you need a good wegs doc and glad your heading to one.

Mary

MikeG-2012
01-19-2015, 02:14 AM
Becky,

Pre dx I was covered from head to toe with large hives, went on for about six months that was the start of my world changing. My first rhemy told me that was my body going wacky. I still get hives off/on, however never that big flare that I first had. I agree with many on hear you need a good wegs doc and glad your heading to one.

Mary


I had a similar experience, but mine went beyond small hives. Some were 3-4 inches in diameter on my midsection, and I had 1 inch sized hives on my neck and hands. Since original high-dose steroids, none have returned.

annekat
01-19-2015, 05:05 AM
Weird, I had occasional unexplained incidences of hives as a young adult. They were on my inner thighs and they came and went mysteriously. Could have been a reaction to a laundry detergent, I suppose. But I wonder if it was my body "going wacky" as in a precursor to Wegs.

drz
01-19-2015, 05:23 AM
I had a severe rash like this over most of my body early in treatment but it was thought it was probably an allergic reaction to Meropenem meds. Most people with Wegs do develop some skin lesions or skin problems after five years. This might related to having our immune system suppressed and other meds we often take.


It sure sounds like an allergic reaction if it is itchy.
The rash my mom gets, from vasculitis, is not itchy nor raised looks like this

http://neuromuscular.wustl.edu/pics/people/patients/Hands/slerashhpsm.jpg

mrtmeo
01-19-2015, 05:43 AM
Hi drz,
My mom's maybe due to a reaction to benzodiazepines.
Unfortunately, she is still tapering the benzo and this maybe why she is not in remission, yet.

jakekell
01-19-2015, 09:25 AM
Mike G,

That is like mine they were big and never that bad again after the pred. I get some once/awhile a spot or two and I put pred. cream on them right away.

annekat
01-19-2015, 10:18 AM
Mike G,

That is like mine they were big and never that bad again after the pred. I get some once/awhile a spot or two and I put pred. cream on them right away. Where does one get pred cream? Is it by prescription? I know about hydrocortisone cream that is available OTC for insect bites, poison ivy, and such, but am thinking it may not be strong enough for these types of rashes. I don't get bad rashes, but was just curious.

jakekell
01-19-2015, 12:38 PM
I use the hydrocortisone cream first and if that doesn't work I use cream (script) Beatamethasone Dirpopinate. I have Lichen Sclerous just a side benny of wegs in my case so the script is for that. I did find if I don't use gluten my skin issues caused by the Lichen's almost stays away. This is only something I use a dot of here and there.

Jaha
01-20-2015, 08:42 AM
About two years before getting really sick and being dx'd I had a rash down both my shins. The Dermatologist didn't know what it was so he gave me a rx for pred cream, and told me that if it didn't go away it would have to be biopsied. I just ignored it at the time and it went away eventually, but I do believe it was Wegs related. I once more have developed a rash under my right arm and the doctor gave me an anti-viral cream and an anti-viral med, because we thought it might be shingles again. This rash has been there since the second week of Dec. and it looks like some of the pictures on the web of vasculitis of the skin. I am also now taking anti-biotics for a UTI and the rash is still there, so I guess it's time for that biopsy. Best wish you for getting a clear answer about your rash.

mrtmeo
01-20-2015, 11:13 AM
About two years before getting really sick and being dx'd I had a rash down both my shins. The Dermatologist didn't know what it was so he gave me a rx for pred cream, and told me that if it didn't go away it would have to be biopsied. I just ignored it at the time and it went away eventually, but I do believe it was Wegs related. I once more have developed a rash under my right arm and the doctor gave me an anti-viral cream and an anti-viral med, because we thought it might be shingles again. This rash has been there since the second week of Dec. and it looks like some of the pictures on the web of vasculitis of the skin. I am also now taking anti-biotics for a UTI and the rash is still there, so I guess it's time for that biopsy. Best wish you for getting a clear answer about your rash.

Hi Jana,
The biopsy takes a big chunk of skin out like a core sample, leaves a scar and sometimes hurts for a long time.
If it came back leukocytoclastic vasculitis, it could be an allergy or drug induced.
I don't know if they can determine which drug other than trial and error with removing a drug at a time.

jakekell
01-20-2015, 11:25 AM
About two years before getting really sick and being dx'd I had a rash down both my shins. The Dermatologist didn't know what it was so he gave me a rx for pred cream, and told me that if it didn't go away it would have to be biopsied. I just ignored it at the time and it went away eventually, but I do believe it was Wegs related. I once more have developed a rash under my right arm and the doctor gave me an anti-viral cream and an anti-viral med, because we thought it might be shingles again. This rash has been there since the second week of Dec. and it looks like some of the pictures on the web of vasculitis of the skin. I am also now taking anti-biotics for a UTI and the rash is still there, so I guess it's time for that biopsy. Best wish you for getting a clear answer about your rash.

I have had a couple of them done skin biopsy and they weren't bad at all just depends what they think they are looking for.

renidrag
01-20-2015, 02:37 PM
The only rash I had was an allergic reaction to Imuran. Went back to CTX and still worry about bladder. The rash was small dots all over, particularly the torso. Off Imuran, rash gone. My how much we share.

Dale

mrtmeo
01-20-2015, 02:42 PM
The only rash I had was an allergic reaction to Imuran. Went back to CTX and still worry about bladder. The rash was small dots all over, particularly the torso. Off Imuran, rash gone. My how much we share.

Dale

Lot's of water and cranberry extract.

Tom
01-20-2015, 05:58 PM
That's what is so scary about the net when looking up diseases.
The pictures they show are so severe.The day I woke up and saw the purpura, it was a lot worse than the above photo!
I was so grossed out that I took my shower and when I washed my legs I could feel the rash but refused to look and only peeked for about the 3rd time in the ER!
I showed a pic of purpura from the ne one day and she said mine was much worse and I about got sick just from the photo on the net much less looking at my rash!

mrtmeo
01-21-2015, 05:04 AM
The day I woke up and saw the purpura, it was a lot worse than the above photo!
I was so grossed out that I took my shower and when I washed my legs I could feel the rash but refused to look and only peeked for about the 3rd time in the ER!
I showed a pic of purpura from the ne one day and she said mine was much worse and I about got sick just from the photo on the net much less looking at my rash!

Tom,
Was your rash leukocytoclastic vasculitis, drug induced?
What did you do to get rid of it?

drz
01-21-2015, 07:38 AM
I have had a couple of them done skin biopsy and they weren't bad at all just depends what they think they are looking for.

The scar from the biopsies wasn't much worse than the scar from having the lesions frozen but did take longer to heal.

Pierre42
01-21-2015, 03:26 PM
Purpura - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Purpura)

You might call it "a rash" but with Wegeners it's basically subcutaneous bleeding because your flare has used up all of your platelets (from savaging your blood-vessels) and your red blood cells have leaked into your skin.

When I first came down with symptoms I looked like I'd been attacked with a red paintbrush for about 2 inches all around my leg just above the ankle bone.

It went away the next day, so I thought it was nothing (apparently that was actually a "go to a hospital immediately" symptom, so the specialist told me after).

Nowadays knowing "that rash" is a major symptom of a flare means small-insect-bites (mosquitos, sandflies, etc) trigger my paranoia. (yes, many other things "look like that thing", all that glitters is not gold, etc)

Meanwhile I have tapered off my Pred dose entirely from my flare midyear, and my only current treatment is 150mg Azathioprine (Imuran) daily. (and Vitamin D, and Calcium)

After a month-or-so (let things stabilize again) we'll look at tapering that down somewhat (? maybe half that dose ?).

kaysee
01-24-2015, 05:43 PM
A couple of months before being diagnosed with WG I had a rash like that mrtmeo pictured. It came on suddenly first on my feet and hands and finally covered my legs and arms. It looked as bad as that in the picture, but the red spots were more like pin pricks. It never hurt or itched, yet I thought it was an allergic reaction to an antibiotic I was taking for inflammation of my outer ear. At the time the infectious disease Dr. put me on pred and referred me to the rhuemy because he felt the ear problem was an autoimmune disease and not an infection. The rash went away within a few days and I kind of forgot about it until my rhuemy asked me if I had ever had a rash. I'm positive it was WG related as my new heart issue.

Been away for awhile because I was hospitalized for the heart issue in Nov and had a water leak in my home while in the hospital. I have been busy going to physical therapy for a hip problem and dealing with all the people in and out of my house to do repairs.

mrtmeo
01-25-2015, 03:44 AM
A couple of months before being diagnosed with WG I had a rash like that mrtmeo pictured. It came on suddenly first on my feet and hands and finally covered my legs and arms. It looked as bad as that in the picture, but the red spots were more like pin pricks. It never hurt or itched, yet I thought it was an allergic reaction to an antibiotic I was taking for inflammation of my outer ear. At the time the infectious disease Dr. put me on pred and referred me to the rhuemy because he felt the ear problem was an autoimmune disease and not an infection. The rash went away within a few days and I kind of forgot about it until my rhuemy asked me if I had ever had a rash. I'm positive it was WG related as my new heart issue.

Been away for awhile because I was hospitalized for the heart issue in Nov and had a water leak in my home while in the hospital. I have been busy going to physical therapy for a hip problem and dealing with all the people in and out of my house to do repairs.

Hi Karen,
I hope your heart issue has been corrected.
A water leak while in the hospital, wow, that is terrible.
I sure hope you had a place to recup while they worked.

mrtmeo
01-25-2015, 03:48 AM
The rash is vasculitis as piere said and it comes and goes due to the waxing and waning of vasculitis.
My mom's would come and go all the time, but when I asked her old gp if it was vasculitis, he said he thought so.

annekat
01-25-2015, 02:14 PM
Purpura - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Purpura)

You might call it "a rash" but with Wegeners it's basically subcutaneous bleeding because your flare has used up all of your platelets (from savaging your blood-vessels) and your red blood cells have leaked into your skin.

. That does sound like what I always thought about mine. Little blood blisters. Good explanation of that. I have very few of them, and rarely, sometimes when I'm tapering pred. I don't even think I had them when I was first dx'ed, but maybe I was too sick to notice. Recently, I had a couple of small, roundish bruises after a minor injury that broke the skin a tiny bit. These little Wegs blisters started to congregate around the margins of the bruises, and were there for a few days. I thought that was a little unusual, as I hadn't seen them around a bruise before.

mrtmeo
01-25-2015, 02:37 PM
That does sound like what I always thought about mine. Little blood blisters. Good explanation of that. I have very few of them, and rarely, sometimes when I'm tapering pred. I don't even think I had them when I was first dx'ed, but maybe I was too sick to notice. Recently, I had a couple of small, roundish bruises after a minor injury that broke the skin a tiny bit. These little Wegs blisters started to congregate around the margins of the bruises, and were there for a few days. I thought that was a little unusual, as I hadn't seen them around a bruise before.

Hi Anne,
Cindy Webber had MPA and she was on TV mystery diagnosis and she describes a vasculitic bruise she had with tiny dots surrounding it called petechiae. Her story starts at frame 22:00
https://www.youtube.com/watch?v=H1i2X6Q0LCE

annekat
01-25-2015, 04:33 PM
That was very interesting, Blake, thanks for sharing! The petechiae did look like mine. But otherwise, her story was much more dramatic. In retrospect, I'm not sure whether my much smaller bruises were caused by something external or could have just popped up on their own. It wasn't that long ago, maybe a couple of months ago when I was going through some stress. They didn't come and go like hers, and there was no pain, they just were there for a week or two and then faded. Weird. Right now, I feel great, no bruises, no red dots, no nothing. Dr. Kittaka seems like a very good doc and a very nice man. I wonder where he is located and if you could consult with him about your mom. Cindy did very well on the CTX (and in her case, prednisone, too). Of course she is a lot younger than your mom. But I'd sure like to hear Dr. Kittaka's viewpoint. I thought the program was very well done, except my only criticism is that they never said that MPA is a form of vasculitis and one of quite a few types. It was interesting to hear it strikes 1 person in 100, so about 3 times as rare as Wegs, if we use the 1 in 30,000 figure that I've heard most often. Thanks, again, and I'd recommend this clip to anyone on here.

mrtmeo
01-25-2015, 04:38 PM
Hi Anne,
Dr Kittaka is in Illinois.
yours might not get that bad because u r on an immune suppressant.
Cindy wasn't on any medications when she had the bruising and petechiae.

annekat
01-25-2015, 06:39 PM
Hi Anne,
Dr Kittaka is in Illinois.
yours might not get that bad because u r on an immune suppressant.
Cindy wasn't on any medications when she had the bruising and petechiae. I never had anything like that during the 2.5 years before my dx, and never any red spots until after my dx, and normally, when I do, they are very, very few. The bruises I had recently were an isolated incident. I actually think the bruises were from an external cause, like maybe doing yardwork, and there was some minor abrasion involved as well. The petechiae didn't appear until after the bruises had started to heal. I've bruised easily all my life and never seen it before. So, of course, it is Wegs related and appears to be a variation of what Cindy had. But all this time, whether off or on immunosuppressants it's never happened. But they definitely looked like the red dots of Wegs. So I'm thinking it was an odd combination of some unusual abrasion causing the bruises, plus the Wegs blood blisters coming to the surface at that point. I didn't think that much of it at the time, and they went away soon, so there were no worries. But seeing Cindy's story was really interesting in that context, even though she has MPA instead of WG and they were so much more prominent and troubling. I don't remember hearing of any Weggies with that same scenario. But we are all different and there are so many possible symptoms.