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Lightwarrior
03-26-2010, 05:01 AM
I've been playing ring around the rosie with my Doc friends, finally went to my Rheumy yesterday who recognized immiediatly that I am flairing and took contact information to contact Dr. Langford. He got me in last night for 1st infusion of 1000 mg IV Pred, have another one today and one tommorrow. I am already responding to treatment. Could shower without having to stop midway to sit down and breathe. Could sit up straight for entire morning conference (30 to 45 minutes) withought having to lean back for chair support. Can touch kidneys withought crying. He is taking over as the driver, I think my pulmo and nephro will be relieved to be only consults. I feel hopeful, not happy that I had first flair during high dose po pred and 250 mg cytoxan a day, but happy to be responding to pulse steroids. My collegues have sequestered me to my office, I know it is to protect me, but may be a self-defense mechanism on their part also they're a little scared of me on that high dose since they have been part of my po ride and they curse the coffee shop if they sell me anything with caffeine on a normal day. (LOL).

I know, I know, that I should have done this a long time ago and I may have made things worse. Nurses are stubborn, I'm stubborn but vow to not be so stubborn and stupid.

Jack
03-26-2010, 05:21 AM
I'm not so sure that you should be working with that much Pred inside you! It is a huge dose and usually only used in crisis.

In the past, I have been on pulsed Pred and also pulsed CTX, but this method was not effective for me. Daily oral worked much better.

Sangye
03-26-2010, 05:38 AM
Lightwarrior, I agree with Jack that it's not a good idea for you to be working. You need to rest! (Though I'm sure the pred is telling you you're fine fine fine...) I'm gonna nag you on this, so prepare thyself. :D

Don't be hard on yourself for not taking action sooner. Just learn from it and try not to repeat it. We all go into denial very easily. Very glad your doc is going to call Dr Langford. If you're on ctx and high-dose oral pred but your Wegs is still worsening, they need to change drugs.

elephant
03-26-2010, 05:39 AM
OHHH the nagger is here ...I agree with Jack. You should be home in bed resting. You are flaring with WG and need to rest. I am a RN, but I learned my lesson. Lightwarrior...I know you are very intelligent...but you have to take care of your self. Can you do short term disability? You need to see Carol Langford and get her to look at you physically. I know you have people there who love you and would take you there, I sense that. It will all work out...need to take care of yourself first and your family will be fine. Let others take care of you, I know that it is hard..cause you are use to taking care of others. :)

Sangye
03-26-2010, 05:49 AM
I agree with Elephant that it's best to see Dr Langford in person.

Lightwarrior
03-26-2010, 06:34 AM
Can you do short term disability?

I have short term and long term as a benefit, the problem is that it does not cover insurance. I have carefully guarded my extended illness and time off benefits to keep a month in the bank, if I go over that month disability would kick in at 3/4 my normal salary (okay) but my cobra would be $1496.00 a month for insurance that isn't paid if I'm out of my eib/time off. That would be impossible, which would mean a lapse in insurance, inability to get meds, etc. etc. I am not working very hard, and have the option of a sleep room if I need it here or my office has room for a recliner. I have to guard and build my time off so I play the Insurance game correctly.

DEE
03-26-2010, 08:25 AM
sorry to hear things not been so good lightwarrior
like you i sometimes use the word im fine
got bloods results back today rang wg consult to tell him
he didnt ring back so took it no news good news even though from looking at them even i knew things not quite as usual
BUT he did ring i have to have bloods done again first thing tomorrow
low platlets etc im on ctx and high preds again thought things where looking up
please take care of you i understand about work i told mine id be of for two weeks back in jan when i had kidney biopsy
still not back wg consult and own gp keep telling me no because your not stable enough i work in schools and get full pay for the first six months
hope u are feeling better soon DEE x

elephant
03-26-2010, 08:27 AM
Yea, I agree with you Lightwarrior...you don't want to be homeless. So glad you have the option to sleep. I totally understand the insurance game. Get to Carol Langford please...you will understand why when you go.....you feel that you were really seen and heard. It is worth the trip! Praying for you to get better soon.

Sangye
03-26-2010, 08:41 AM
It sickens me (more) to know that you can't take adequate time off because of stupid insurance issues, Lightwarrior. This is heartless and wrong. I'm so sorry---

Lightwarrior
03-26-2010, 09:00 AM
It sickens me (more) to know that you can't take adequate time off because of stupid insurance issues, Lightwarrior. This is heartless and wrong. I'm so sorry---

Not just for us, but for all of the others who have already lost the insurance game... it is why we need to stay strong and advocate for health care reform. I consider myself lucky that I know the game and can still manipulate it, there are so many others who can't. Thank you for always thinking with your heart.

pberggren1
03-26-2010, 01:58 PM
The sad reallity is that it is not a game. It is our lives they are dealing with!

Doug
03-28-2010, 03:41 PM
I always think of W. Edwards Deming, the Quality Guru, who wrote of the people who run this world (ostensibly), certainly the people determining the limits of health insurance we run up against: "How can they do their jobs. They don't know what their jobs are."

His point was that managers need to think beyond the current quarter, even the current year, and take the longest term possible look at the effects of their decisions. Often, perhaps usually. Just saying!

For example, if denying our friend the time and care she needs off to heal, with no negative consequences to her, no loss of job, no loss of benefits, no decrease of salary [breathless pause....OK jump back in!] means she ends up losing ground in the course of healing, has to take expensive medications previously denied when they might have done a good job, ends up with disabling and preventable effects, up to and including possible death, then they failed at their jobs.

Sorry for the complexity ofr that sentence. In short: "Penny wise, pound foolish!"

Bastards!

Cindy M
03-28-2010, 04:23 PM
Don't be to hard on yourself for not going to the doctors sooner. I did this myself and did take quite a few steps backwards. But I did learn from that. I cannot even imagine working in your condition. It is very sad that you have to play the insurance game, with all the other problems from being ill you have to worry about the insurance part. I live in Alberta, Canada and cannot tell you how thankful I am for the coverage I have. I have not been able to work since November of 2008. I only get 70% of my wage but I do have medical insurance. My thoughts are with you and hope you are feeling better soon.

Lightwarrior
03-31-2010, 05:24 AM
Just had abdominal CT, don't know why I had to drink contrast??? Eyes still swollen, labs suck. wbc 2.9 rbc 2.61, Hgb 9.9, hct 27.4 segs 94. Urine has 46 red cells with moderate urine blood. BUN/CR normal. Rheumy says stop cytoxan he thinks it is reaction to cytoxan and not flare, massive diarrhea after stupid contrast. I'm going home to rest, and we will recheck labs in a week. Is this reasonable or am I freaking out?

JanW
03-31-2010, 05:48 AM
Lightwarrior -- I'll leave it to others to discuss labs but I just wanted to point out (as I always do) that I saw Dr. Merkel of Boston University saying that any WG patient should tell their radiologist before taking contrast. He said that contrast for WGs is one of his pet peeves (and so many get it done for routine chest CTs, for instance), because you simply don't need to be putting any extraneous stuff into your body when you have this crazy disease. I won't take it for chest CTs, but never had it offered for any others.

Why did you have to get an abdominal CT?

Lightwarrior
03-31-2010, 06:16 AM
Intense back pain, kidneys sore. Oral contrast, yuch, now I have the massive runs.

Jack
03-31-2010, 06:23 AM
I was only allowed the contrast test if I was on a saline drip and had a course of some sort of detox pill. Not sure what it was called, but they give it to overdose patients (had some nurses asking if I had done anything silly. ;) ).

elephant
03-31-2010, 06:27 AM
Lightwarrior, get some rest and have you started with the proceedings yet for the WG specialist? Has your local Rhuemy called someone like Carol Langford at cleveland clinic to discuss your case? I don't want to nag....I know you are so tired and tired of this crap you are dealing with. Just want you to be taken care of and don't won't you worse. Today just relax and rest. Tomorrow is a new day. :)

JanW
03-31-2010, 06:44 AM
I agree with elephant. Hope everything will be ok!

Sangye
03-31-2010, 07:16 AM
I'm so sorry you're feeling like this, Lightwarrior. I can hear the weariness, exasperation and frustration in your words. It does look like the ctx is tanking your WBCs too much. I don't see how he can say it's definitely not Wegs, though. So much blood in your urine is not okay. Because your Wegs symptoms are still so bad, it does make me wonder if it's BOTH ctx toxicity and Wegs activity. That's what ctx does to me-- overly toxic but doesn't control the Wegs, either.

I'm with Elephant about calling a Wegs doc in asap.

Also, do you have someone else who's able to post updates in case you get hospitalized or are too wiped out to post?

DEE
03-31-2010, 07:17 AM
hope you feel beter soon and you getthings sorted DEEx

Lola
03-31-2010, 10:42 AM
Oh, Lightwarrior. I am so sorry you're feeling badly.

Lightwarrior
03-31-2010, 12:36 PM
Just listened to the dictation of my CT, multiple kidney stones and a angiomyolipoma. I was down to one kidney stone which they tried to lilthrotripsy two weeks before my Wegs symptoms initially appeared, I have thought that the lithrotrispy was the trigger that kicked in my sypmtoms (not caused but the trigger that started the fires burning). They were unable to completely blast that last stone and I have been so sick since that I haven't wanted to mess with it. This could explain the kidney pain and blood in urine. I didn't ask today(if he has contacted Langford) because I felt so bad, but this is first time my rheumy has called the shots (my other docs are friends, don't want me to be sick and willing to negiotiate with me) I was sitting in my office waiting for the labs to call up(not working, but why leave until I know results) when he called me and told me to immediately stop my cytoxan, (which means he was watching for labs also) that I was home for at least two weeks and if I wanted to argue he would admit me. So here I am, at home using some of closely guarded time. I still have time and am coming to grips with this is why I have been saving it. I'm not convinced that there is not flaring going on, but I did hear on the CT that lungs were clear and my lungs looked like crap when I was active.

So.. does this mean that I won't be able to use Cytoxan?? I feel a little stronger at this moment. Thanks for the support. My youngest daughter Valerie will post if I end up in more trouble and can't. (Even though I'm a glass 1/2 full person I know this may not be the worst yet)

Sangye
03-31-2010, 01:04 PM
Kidney stones-- no wonder you've been hurting! I get them all the time because of a drug I'm on. The best way to get rid of them quickly is to take liquid phosphorus. The brand I use is Standard Process (Phosphood (http://www.standardprocess.com/display/StandardProcessCatalog.spi?ID=128)). You can only buy it from health care professionals.

Call SP to ask for a local office that has it. Contact Us (http://www.standardprocess.com/display/PublicContactUs.spi)

Since I get stones with no warning, I'm never without a bottle. It'll dissolve stones very quickly--turns them right into sand. It doesn't interact with any drugs or herbs.

One indication of a phosphorus deficiency is excessive tartar on your teeth.

Cindy M
03-31-2010, 04:24 PM
Lightwarrior you sound like you have gone through so much. I really hope everything starts going better for you. I am really new to all these medical words and tests. What is contrast and what does WBC stand for. I hope you are feeling better soon.

JanW
03-31-2010, 11:32 PM
Contrast is a dye type material that radiologists use to make images show up on CT scans more clearly. Apparently, at least according to the radiologist I spoke with, they often don't need contrast, but when docs order it they give it anyway. WGs should be very careful about taking contrast, at least according to what Merkel said in the webinar I watched. WBC is white blood cell count.

elephant
03-31-2010, 11:39 PM
LIghtwarrior, so glad to hear that your CT of your lungs scan is clear. Just take it one day at a time. Once you get a hold of the WG specialist they will be able to answer your questions about your medicine's. She does a whole body scan and asks alot of questions and then they come back and let you know immediately. So before you leave that day of your appointment she will go over any questions or concerns. I think you got the point. I like to repeat for some reason. :)

Doug
04-01-2010, 01:07 AM
@Lightwarrior- glad somethings (lungs) still work for you! Kidney pains are no fun, for sure, and I hope your doctor (or the SP?) is able to bring that into line, soon.

I asked the mother of a friend of mine once, "Which is worse pain? Childbirth or kidney stones?" She told me, in so many words, she'd go through childbirth over and over before she'd endure any more kidney stones.

Jack
04-01-2010, 01:14 AM
Just a point of interest on the Dye Contrast subject -

In the early days of my diagnosis, when I was still a subject of great interest, the research guys did an experiment on me. They took some blood and isolated one of its components that they thought was a marker for Wegener's and then marked it with a radioactive isotope. They then put this back into me and did a body scan. All the areas affected by Wegener's showed up as bright spots! They were all very pleased about this, I hope it helped the research.

JanW
04-01-2010, 01:25 AM
I have heard that as well. Have never experienced kidney stones, thank God!

Sangye
04-01-2010, 01:50 AM
Despite being completely crippled with severe joint for almost a year pre-dx, despite my intracranial and CSF pressure being the highest the trauma center had ever seen, the only time I took a painkiller---morphine-- was when I got my first kidney stones. I can't even describe the level of pain.

Jack-- that's really cool. I wonder what happened with that research? It seems like it could be so useful.

DEE
04-01-2010, 02:13 AM
ive had kidney stones and past them
and yes Doug what u heard was true i would have rather given birth again
Lghtwarrior you have my sympathy the pain is horrible
i hope you soon recover
take care of you DEEx

Lola
04-01-2010, 03:04 AM
Lightwarrior, you must be very strong to have put up with this pain for so long. Amazing woman!

Lightwarrior
04-01-2010, 05:48 AM
[QUOTE=Sangye;13384]Kidney stones-- no wonder you've been hurting! I get them all the time because of a drug I'm on. The best way to get rid of them quickly is to take liquid phosphorus. The brand I use is Standard Process (Phosphood (http://www.standardprocess.com/display/StandardProcessCatalog.spi?ID=128)). You can only buy it from health care professionals.




Thanks, I'll make that call today. Do I need a prescription? I get stones without warning also. This beats the heck (pardon the pun) out of lithrotrispy.

Lightwarrior
04-01-2010, 07:30 AM
Call SP to ask for a local office that has it. Contact Us (http://www.standardprocess.com/display/PublicContactUs.spi)

Since I get stones with no warning, I'm never without a bottle. It'll dissolve stones very quickly--turns them right into sand. It doesn't interact with any drugs or herbs. .

I just followed your link and they should be sending me name of someone in AZ who can prescribe. Thanks again Sangye

elephant
04-01-2010, 09:33 AM
Good luck to you Lightwarrior, hope your feeling much better today!

Sangye
04-01-2010, 09:37 AM
You're welcome. Get a couple bottles even though one will last you a few months. Like I said, I am never without it, not even for a quick trip to the store!

At the first sign of a stone (you know the unique pain by now), take 1-2 droppersful in a full glass of water. Wait an hour, and if the pain is still there, take 1 more dropper. Continue taking 1 dropperful an hour until the pain is gone. I've noticed I break into a sweat when the stone is actually dissolving. When the sweat ends, so does the pain. If you do wind up having to take painkillers, keep taking the phosphood-- no drug interaction and it will either dissolve the stone or make it smaller and easier to pass. Of course, if anything gets worse or you need medical care, don't hesitate to get it.

Phosphood is safe to stay on daily for chronic phosphorus deficiency, but without treating you I have no idea if you need to take it daily or how much you should take if so. For now, just take it when you feel kidney stones.

Lightwarrior
04-01-2010, 10:30 AM
Thanks, I took one percocet last night I have such a negative reacton to pain killers, I think they must intefere with my REM sleep and leave me awake but still paralyzed. I have always been able to change direction in my dreams, but pain killers give me dark dreams and I have to struggle to pull myself out. I usually just opt for the pain, an alternative sounds like heaven.

Sangye
04-01-2010, 12:51 PM
Yeah, I can't take any of them-- they give me awful migraines that last for days (after just one dose) and don't really take away the pain.

jola57
04-01-2010, 04:17 PM
Lightwarrior, I know what you mean, tylenol 3 and demerol tha I was given post op gave me the crasiest dark dreams ever - I have never taken any pain killers since. I passed stones a few times and still can remember every painful second. I slept with a towel you know where and sat in a hot bath for hours on end. Never knew about the drink - oh joy - any relief will be welcome. Thank you mommy Sangye.

pberggren1
04-01-2010, 06:16 PM
That's interesting about the contrast dye Jack. Do you know if the Wegs affected areas would have shown up without the contrast dye? Which areas were affected on that particular scan Jack?

I am getting a little worried now with my CT scan coming up on May 19. Do you think I should contact my Doc ahead of time and ask about the contrast dye and what Dr. Merkel says about it? Maybe I should contact the CT department and ask them if I will be getting a contrast dye. All of the CT scans I can remember having all used the contrast dye.

Jack
04-01-2010, 06:49 PM
In my last post, I was referring to an experiment they did on me using a radioactive marker rather than contrast dye. This is not a regular method in use at the moment as far as I'm aware, but was very interesting. It is a long time ago now, but I remember the pictures showing bright splodges in the areas of my sinuses and kidneys.

The last time I had contrast dye with a scan was at Christmas when I had an embolism. The renal team were consulted and were only happy to let it go ahead with the precautions taken that I described.

pberggren1
04-01-2010, 07:34 PM
What precautions were taken? Is the contrast dye radioactive?

Jack
04-01-2010, 08:35 PM
The dye is bad for your kidneys. I had to drink lots of water, was put on a saline drip and had a short course of a detox drug usually given to overdose patients (not sure what it was called). These were all precautions designed to get the stuff out of my system as quickly as possible. The radiographers were also under instruction to minimise the dose of dye used.

elephant
04-01-2010, 08:40 PM
I was given a radioactive marker dye for the Hida scan to check my gallbladder. It was a very low dose.

pberggren1
04-01-2010, 10:18 PM
Thanks guys. I think I will call the CT department first and then my Rheumy.

Sangye
04-02-2010, 01:06 AM
Phil, there's no reason for a chest CT to use contrast unless they're looking for pulmonary embolism (like Jack said). Then it's a necessity to see clots.

I've had a huge number of CTs--mostly chest-- I think around 20. Many of them with dye because of my history of lung clots. Each chest CT is equivalent to 400 chest x-rays. Adding dye increases the radiation exposure a lot (I don't know the factor). It's imperative that our docs minimize our radiation exposure, since we are more likely to need CTs in the future.

pberggren1
04-02-2010, 01:15 AM
Thanks Sangye. I think I will refuse it on my next CT on May 19.

Sangye
04-02-2010, 01:22 AM
If your doc has ordered it, they have to use it. So first check with the CT dept to see if it was ordered. If it was, talk to your doc to ask why.

pberggren1
04-02-2010, 01:24 AM
Sounds good. Thanks again for the advice.

coffeelover
04-02-2010, 04:08 AM
Phil,

I am so happy to hear you taking control of your medical care. You are so smart!
Lisa

pberggren1
04-02-2010, 06:06 AM
Lisa,

We all have to become as knowledgable as possible about this disease we have and all the different things we might encounter. I have learned quite a bit about WG and the medical system and many other things just from the various people on this site. We have to take control of our medical care. We just cant walk into our doc appt and act like a zombie and just accept what they say. We have to be proactive and gain as much knowledge as we can to question our docs. I know there are many things I don't know yet about WG and the treatment of WG but I do know that every time I log on this site I learn something new. I challenge all Weggies to take charge and be proactive.

elephant
04-02-2010, 09:05 AM
I practically have to beg my doctors for a CT scan. My lung nodule was very sneaky! So I want one done soon. The last CT scan I had was August 2009.

Sangye
04-02-2010, 09:47 AM
We just cant walk into our doc appt and act like a zombie and just accept what they say.
That's right. We might be "undead" but we're not zombies. :D

pberggren1
04-02-2010, 10:18 AM
My last CT was June of 2009 to to determine WG in lungs or infection.

Lightwarrior
04-02-2010, 10:42 AM
Just back from the ER, passed a kidney stone, actually two. Feel much better, needed the ER for hydration and pain control. RBC's in my urine were 106, normally they are under 20 when I pass a stone, ER doc said my bladder was visualized in the CT and no cystitis. I still worry about that, unusual for me to have such a high RBC in my urine.

Sangye
04-02-2010, 11:45 AM
Yikes-- what was their explanation for all the blood?

elephant
04-02-2010, 11:59 AM
Lightwarrior, sounds like your having all the fun now. Hope you start to feel better. I wonder if the blood is from all the irritation , passing that stupid kidney stone!

Lightwarrior
04-02-2010, 02:10 PM
Yikes-- what was their explanation for all the blood?

kidney stones

Col 23
04-05-2010, 11:43 PM
Hi Lightwarrior and everyone
Sorry you have been going through so much Lightwarrior. Im glad your home at least and not trying to work through all this. Keep us updated on how you are doing.
Thanks for all the info posted on here. I have a CT Scan, bone density and bloods again at the end of April. Just wondering if you think Im having a flare at the moment. I have left eye that is feeling like someone punched me in the eye and then it goes to mild irritation. I have steriod drops for that and I upped them from 3-4 times aday. I have also woken up early in the morning with pain in left chest region. Doesnt appear to be heart. I have had it twice today around the breast area. Lumps appear to be back in breast area again. All my appointments are scheduled for the end of April. I have just survived 1week on tapered pred from 30 to 25mg. Also oral methotrexate 25mg continues. I also have marked anisocytosis and Mild neutrophilia. I think that means anemia. Any thoughts.
cheers Col 23

Sangye
04-05-2010, 11:54 PM
Col-- I think the end of April is too far off if you're having chest and eye pain. They need to rule out Wegs lung involvement and also blood clot in the lungs. Weggies are 23% more likely to develop clots. Good idea to call your doc today and ask what to do.

pberggren1
04-06-2010, 12:00 AM
I agree with Sangye Col 23.

What is anisocytosis and neutrophilia?

Col 23
04-06-2010, 12:05 AM
I think its anemia no B12. Still working this one out. Anyone else know much about this? I will call docs tomorrow. Thanks I forgot about blood clots in lungs, I was iniatially diagnosed with lung, eye, breast, RA involvement.
Col 23

Lightwarrior
04-06-2010, 01:30 PM
Hi Lightwarrior and everyone
Sorry you have been going through so much Lightwarrior. Im glad your home at least and not trying to work through all this. Keep us updated on how you are doing.
Thanks for all the info posted on here. I have a CT Scan, bone density and bloods again at the end of April. Just wondering if you think Im having a flare at the moment. I have left eye that is feeling like someone punched me in the eye and then it goes to mild irritation. I have steriod drops for that and I upped them from 3-4 times aday. I have also woken up early in the morning with pain in left chest region. Doesnt appear to be heart. I have had it twice today around the breast area. Lumps appear to be back in breast area again. All my appointments are scheduled for the end of April. I have just survived 1week on tapered pred from 30 to 25mg. Also oral methotrexate 25mg continues. I also have marked anisocytosis and Mild neutrophilia. I think that means anemia. Any thoughts.
cheers Col 23


Anisocytos means your red blood cells are not the same size and mild neutrophilia means an excess in neutrophi granulocytes. Yes it most likely indicates a mild anemia. I am worried about your chest pain, are you having difficulty breathing? I am still a baby when it comes to Wegeners but it certainly sounds reasonable that you are having a flair. Don't wait till the end of April to be seen, I wonder if you have really done okay with the taper?? I'll be interested to hear what Jack, Sangye and elephant have to say. Hope you feel better

Col 23
04-07-2010, 12:02 AM
Thanks for the response and the info. Feeling alot better no pain in chest today. Mild ache around the chest area and back. Eye still aches. More fatigued however okay. Decided to just monitor it for a few more days. I really want to stay on the 25mg of Steriods and try to reduce so Im hoping this is just a mild hic cup. Does everyone else get a lot of bruising?
A big hug to all you guys who are also goiing through so much wish I had a magic wand sometimes.

cheers Col 23

Lola
04-07-2010, 12:37 AM
Does everyone else get a lot of bruising?

Funny, I was going to ask that same question - thought of it last night. I bruise easily, but the "stain" of the bruise becomes permanent. I've had one on my leg for 2 years, 1 year on upper arm, and another doozy on my right arm from a blown IV - probably will never go away.

Sangye
04-07-2010, 12:41 AM
I think it's part of vasculitis. Wegs affects small and medium-sized blood vessels, so capillaries are on the list. I've been on blood thinners since dx, so I bruise easily from that too. I don't know why a bruise would become permanent--good question for a Wegs doc.

Col-- glad you're feeling better. Which side of your chest is hurting? Right side could be gallbladder. Stay on top of your symptoms and don't let things get close to the weekend before calling your doc. I've learned that the hard way!

Col 23
04-07-2010, 12:45 AM
Hi Lola
I think it must be to do with medications as I have this weird bruising on my uppper back and keep getting bruising on different parts of my body and I cant remember having knocked myself. I asked the docs about the bruising on my back and they indicated that I might have been out in the sun. I told them no and they think it was some sort of dry skin. Didnt sound right to me as I dont expose the back to sun. I know that I am sun sensitive whilst on the Methotrexate and try to cover up as much as possible. Im starting to worry about skin cancers now.
cheers Col 23

Col 23
04-07-2010, 12:50 AM
Thanks for the info. Hope your getting plenty of rest LW.
cheers Col 23

Col 23
04-07-2010, 12:57 AM
Hi Sangye
Hope your feeling better.
Left side chest and right eye. Just aches now havent woken up again with pain.
Thought Id ask you a chiropractor question. I also have degenerative change in my L 5/S1narrowing of the neural exit foramina and degenerative disease of the facets. Remaining levels less marked. This has resulted on crippling leg pain at times and am also unable to do tasks without sitting down. I am also forced to sit down at shopping centres due to the intense pain in my back and legs. Swimming has helped this recently.
Any thoughts. cheers Col 2e3

Sangye
04-07-2010, 01:46 AM
Hi Col,
If that was my spine I'd bring it to a chiropractor. They can't reverse the degenerative changes, but might be able to slow further degeneration while relieving your symptoms.

Where are you located in Australia? Believe it or not, I might be able to find you a good chiropractor there.

pberggren1
04-07-2010, 02:22 AM
I believe it Sangye! You have done astounding things on this site.

Lightwarrior
04-07-2010, 03:18 AM
Thanks for the info. Hope your getting plenty of rest LW.
cheers Col 23

I am getting plenty of rest, I feel much better today, my spirit has much more energy than my body. I got up with all these plans. Took a shower, made my bed and now I'm reduced to sitting. My spirit is outside dancing around the yard admiring the cactus and giving thanks to each direction.

moyan
04-07-2010, 04:53 AM
Hi Sangye, every doc who has seen my hands, they are more blue than pink, just nods and says "prednisone". Most of them heal withing a couple of weeks to leave space for new ones, but I have some, and they were BIG and bloodfilled, have lasted more than 1 ½ months. By now they are a light brownish colour.

moyan
04-07-2010, 04:59 AM
PS I hardly ever know how I get them, but some I know, just touch something and sure enuff. A couple of catclaws ripping one makes it even more inteesting.

Col 23
04-07-2010, 08:21 AM
Hi everyone
LW love the spirit thing. I can relate to that.
Sange I live in Perth Western Australia thanks
Interesting about the hands. I have had problems very simililar even before I was diagnosed. They continue to be bright red. They use to have puscular things on them and so did the soles of my feet. Feet are fine now. Just wondering if it is the pred or part of our disease.
Col 23

Sangye
04-07-2010, 09:42 AM
I think Moyan was saying her hands are blue from being bruised. Moyan?

The little red dots are part of Wegs.

elephant
04-07-2010, 10:51 AM
I have a bunch of little red dots. They are the color of strawberries/raspberries. Do they go away when your in remission or stay? If you get more I am assuming the Wegeners is active. Any thoughts on lumps, bumps and irregular skin crap?

Sangye
04-07-2010, 11:29 AM
Any thoughts on lumps, bumps and irregular skin crap?
LOL-- is that the technical term?

elephant
04-07-2010, 08:30 PM
I am sure that is what the dermatologist think too. Sometimes they can't decipher what is what. Years ago I broke out in a WG rash and 5 dermatologist had no clue what it was, either did I.
It's amazing how long I had this disease and got diagnosed in 2008. Having the kidney transplant medicines probably kept my disease less active.

Sangye
04-07-2010, 11:29 PM
I had tons of bright red spots on my legs when I got dx'ed. They've been a good indicator of Wegs activity for me, actually. I usually don't get them-- or maybe just a couple small ones-- but if they reappear in larger numbers I know it's Wegs. That sign has never failed me. We biopsied several in the beginning and they were consistent with Wegs.

I also have several large painful bumps on my shins that have been there for almost 4 years--started a few months after dx. I think they're clearly erythema nodosum (http://en.wikipedia.org/wiki/Erythema_nodosum), but none of my docs has officially dx'ed it as that or anything else. Two of them turned into Wegs ulcers awhile back--extremely painful and each took about 9 months to heal. They don't cause me any problems now unless I'm seeing a new doc (eg in the ER). I have to warn them not to push on them to test for edema or I'll go through the roof.

Sangye
04-07-2010, 11:33 PM
Col, are you close to this doc?

Neil Brodie
9 Colin Street
West Perth, WA 6005
Phone: 08 9321 1964

Col 23
04-08-2010, 11:35 AM
About 35minutes away. Does he know about wegs? Can arrange appointment when I get back as I have to go into west perth for another app.
thanks heaps
Col 23

Sangye
04-08-2010, 11:43 AM
I don't know hiim, but he does the same chiropractic technique as I do. I found his name through an international listing. I wouldn't expect any doc other than a Wegs specialist to know what Wegs is. You'll have to educate him. I'd be happy to exchange emails with him to speed that along for you. I wouldn't discuss your case in particular, though.

Col 23
04-09-2010, 12:10 AM
Thanks I will go ahead with with making an appointment towards the end of April when I get back from Darwin. If your able to exchange emails and speed that up it would be helpful.
Appreciate your help
Hope your resting and feeling okay
Cheers Col 23

Sangye
04-09-2010, 12:14 AM
Col, can you call him and get an email address? It is listed on the website.

Col 23
04-09-2010, 11:44 PM
Thanks SangyeI wil be back in Perth on the 26th of April and will organise everything then.
I will get through my appointments first I have about 5 to attend in a week when I get back and then I will start
working on the Chiro. Great to know I have the support. If I can arrange anything in between I will, so will get back to you.
Once again thanks heaps.
Col 23