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Gwenllian
06-04-2009, 08:35 PM
Hi guys
How are you all? Sorry I haven't posted for ages!
I have been in reasonable health until recently, where i've been getting nausea, flu like symptoms (that come and go), loss of appetite etc.
I rang my Rheum doctor this week to ask if I could have my bloods done, and it shows my ESR and CRP is up, and my liver function has deteriorated.
I didn't know WG could affect the liver, can it??!
I'm seeing my doctor later on today.
thanks for any info/input!
x:)

Derek
06-04-2009, 08:49 PM
My liver function is not right due to the medication I am on. I have the
option to inject the Methotrexate instead. Bit of a coward with injections so will see how it goes.

Derek

Sangye
06-05-2009, 12:29 AM
I haven't heard that Wegs affects the liver directly, but certainly all the drugs take a toll on the liver. Any drug does, actually. Drugs--even those we "need"-- are considered toxins by the body.

The liver is so good at expelling toxins. It's often said, "The liver is the pharmaceutical company's greatest enemy." They have to make drugs that trick the liver into ignoring a drug so it can stay in circulation and work. That's why many drugs lose their effectiveness over time-- the liver figures them out. Drug companies wind up adding on all kinds of extra molecules to a drug, so the liver has to work harder at disabling it.

Kind of like those dog toys that you can fill with treats. :)

Anyway, the liver winds up overworking and being clogged/irritated/stressed by drugs. That can raise the liver enzymes. We need what we need, but it's best to take as few as possible.

jola57
06-05-2009, 04:41 PM
My liver function test showed deterioration a couple of times, then it goes back to normal. As Sangye says it is good little filter and once in a while, especially given our toxic drugs, it clogs up. Unless your tests continue to go consistently bad I wouldn't worry. I'm sure your rheumy keeps an eye, or just remind him to let you know what is he going to do about keeping your liver happy.

Doug
06-09-2009, 11:42 AM
Until I understood the liver functions as a filter, I used to think calf liver and onions was a fine treat. If you look up your medications on the internet, you'll understand why your doctor monitors your liver function or should be.

andrew
06-09-2009, 07:27 PM
...and why docs recommend weggies DON'T eat offal (liver, kidney etc) :)

Doug
06-10-2009, 11:20 AM
Yeah, especially in this country where meat comes from animals that have been feed God only knows what until the press and regulatory agencies responsible ban the practice. I try to limit my meat intake simply because a little bit goes a long way with me. (Here I sit in the middle of one of America's major beef raising areas typing such statements! I would feel guilty if I didn't feel better for limiting meat consumption.) As for offal, um, yeah.... Most of my ancestors came from Scotland, but no haggis for me!

jola57
06-11-2009, 01:22 PM
all this talk of food is making me hungry. Haggis, a bit of blood might do me good.
After nearly 2 months I did my blood tests todayand am waiting for results. It's always such a looooong wait.

mucjud13
06-16-2009, 12:36 AM
I got a call from my doc on thuesday that my liver count was high and has been for some time and ordered a Cat Scan. I go June 19!

Yes, I was told by my first WG MD that WG can affect all major organs. He has studied WG for over 14 years as a special interest. I was lucky to have him when I was Dx.
Judi

jola57
06-16-2009, 05:03 PM
Hi Judi, welcome, I hope its just a flare and nothing more.

Doug
06-17-2009, 02:02 AM
Yes, hi, Judy! And ditto from me on hope that it isn't a flare. Or anything that can't be controlled with hospitals, 15 specialists, and a good medical plan.

mucjud13
06-18-2009, 03:34 AM
Andrew,
Thank you for your concern. I had tests yesterday. At VA from 8am -4:4:30pm.
Had Infusion of Zometa too. This was my first. I start Exterior Radiation
next week June 25, 2009 for my Breast Cancer. I will be getting it 5x a week for 6 weeks. Kind od scared but been throu worse with WG.
I'm afraid of getting flares while being treated with radiation due to swelling and bacteria infections. I just got over a bacteria infection during recovery of breast surgery.
The MD said he didn;t realize I was on a steroid(I only plasted it on top of my paperwork and his rewuired meds sheet i had to make out!!! Jerk).
I have been trying to set up rides to VA with the Cancer Society. They VA keeps changing my appointments(3x since yesterday for just my first session).
I feel alone with this whole thing and trying to reach out here and yahoo. Up to 3 weeks ago I could not find any of you guys in my 5 years of WG.
So, thers is hope for me here for support and to help to others with this weired and painful disease.
Again, Thanks for you email.
Judi

crackers
06-18-2009, 04:40 AM
my wg started jan 2007 in sept 07, while undergoing a wg related colonoscopy they found a tumour.this was removed but the following day my bowel perforated which resulted in emergency surgery,a week in intensive care and a further 2 weeks on a general ward.i started a 24 week course of chemo in the december finishing in june of last year.while all this was going on the wg kind of took a back seat without any serious repercussions.at the moment the breast cancer has to take priority, treatment wise,as the main threat to your health.all the way through my episode the wg was monitored but as it didn't worsen they concentrated on the cancer.i know it's a scary time for you but don't feel alone.when you found us here you also found dozens of new friends.friends who understand how you feel and really care about others.PS had my second 6monthly ct scan last week and no cancer.so be positive,good things do happen.
john.

mucjud13
06-18-2009, 05:55 AM
Thank you so much John. I needed to hear what you said about my cancer.
It's been overwhelming.
Yes, I am so glad I found here and all of the nice people like yourself that speak with experience, care and understanding.
Judi

jola57
06-18-2009, 03:07 PM
I had breast cancer surgery last year, fortunately it was not metastatic and no further treatment was necessary, but a cyst festered inside and exactly a year later had to have more surgery to get the cyst out. I was on 35 mg pred and chemo for WG at the time and ortunately all was and is well. So keep positive thoughts and enjoy our little get togethers

coffeelover
06-19-2009, 08:35 AM
Wow Jolanta! I woulod never have guessed. YOU are the inspiration for positiveness. I will follow your lead
Lisa

mucjud13
06-19-2009, 09:44 AM
Hey Jolanta,
Thanks for the support. If I may ask you...what chemo were on while tx for Cancer and what chemo are you on now?
I am starting radiation next week, they keep backing up my start date due to needing to consult more on my plan. I will have 5x a week for 6 weeks external radiation(beam). I have been warned of infection, rash, due to my labs not that great.
I have these tatoo green marks over both breasts and feel like it's Halloween! I just have to take my top off and beam!!!!!lol
You are so positive. I am deep down but I feel like I have been hit with too much and having to make too many decisions about all this.
Like everythingis on hold until this tx is over. I got a call from Cancer Support and they are arranging transport for me-I think. I got a call to day from a nutrionist, it was really nice of them. I seem have everything covered they said as to antinflamatory foods. I'm just trying to Let go and Let God I guess.
Someone said here I need to stay focused on my treatment and let everything else go.
Thanks for the support and I hope I can be of help some time too.
Judi

jola57
06-19-2009, 03:57 PM
Hi Judi, we all inspire each other at one time or another. You inspire me now by being able to talk about letting go in face of what will come. I and others here are with you every step of the way, we can't be there in person but know that we are there in spirit. My cancer did not need treatment so I was only on cyclophosphamide
150mg, 35mg prednisone and bactrim at the time which is probably why ithe cycst formed. I am lucky that I have no side effects. I will be thinking of you and wishing a quick recovery. My mammogram is next thursday so I keep thinking positive thoughts and hope that the long thick lump I feel is just a calcified cyst

mucjud13
06-20-2009, 04:15 AM
Hey Again Jolanta, I Will Be Thinking Of You With Positive Visuals Of Your Lump Being Non Threatening.
Today, I Got Some Further News About My Kidneys. My Labs Were Not Good At The Va. St' Joseph's Hospital/cancer Dept. Called Me To Schedule (per Va Request?) For An Immediate( Within A Few Days) A Ct Of My Kidneys On Monday June 22, @ 10am/ No Food Or Drink For 24 Hours.
I Was Just Telling Someone That I Felt Better Today Or Having A Decent Morning And Then The Call Came And "jolted" Me Again.
Put Me Right Back To When I Was Seeking All Kinds Of Answers About Everything And John Suggested Focus Just On Your Cancer Tx Right Now. He Was Right And I Refocused But, I Keep Getting A Call With "jolts Of New Issues Or Further Complications.
Maaannn! I Can't Even Start My Radiation Tx Yet And All This Other Wg Stuff Symptom Stuff Keeps Coming Up.
I Do Not Know Right Now How You All Do It!!! I Just Don't...
I Have A Ride For Wednesdays(for 6 Weeks) During My Radiation Tx But Nothing Yet For The Other Four Days, The Breast Cancer Support System Gave Me Another Agency To Contact. I Am Just Thinkingo The Hell With It And Take Myself And Just Remain Stressed And Get It Over With.
I've Been Getting A Bad Burning And Itchy Sensation Under My Skin Inside The Top Layer Of Skin On My Arms At Night. I Can Feel Little Bumps Under My Skin(granules,mini Lymph Nodes?). I Haven't Told Anyone Because It Comes And Goes For Past 5 Years And Thought It Was Nerves And They Would Tell Me To See A Psychiatrist So I Have Said Nothing And Tolerate It But Now I'm Thinking It Maybe Related To Wg(i Did Some Searching And Found That There Are Lymphs At Tand Near The Elbows And In Very Rare Cases They Found Granuals Under The Skin That Flares In Wg.
Have You Heard Of This Or Know Someone Who Has. What A "b" I'll Tell Ya!
Please Let Me Know How You Make Out, I Will Pray And Visualize Like I Said That It Is Benign.
Judi

mucjud13
06-20-2009, 04:58 AM
Thanks Doug For Your Support And Humor!!! I Wish You Well Too.
Judi

jola57
06-20-2009, 02:03 PM
I cannot even imagine what you are going thru and no words can make it better, but just know that we are here to listen. I do not have itchy spots but have had knobs of granulomas on my elbows and side of thumb. I couldn't put my elbows on any surface because it hurt like the dickens. They felt like blobs of movable stuf. They went away once I started cyclo again. I realy hope your kidneys will be Ok.

mucjud13
06-20-2009, 02:13 PM
Thanks, I am kind of nervous!! I have another nob or granule on top of my left foot and it swells at times. The first time it happen my PCP(when I had real insurance told me to go to the Emergnecy rm. I did and they admitted me for possible Cardiac Arrest!!!!! I kept telling them I had WG and they would not pay attenttion and did a Catheterization and could not find anything!!!! Finally the 3 rd day they contacted my WG doc and he said it was probably my WG and would see me. What a trip!!!!!
But thanks again for your support and contact and time to read and type to me.
Judi

crackers
06-20-2009, 06:18 PM
judi that'a what we're here for.at some point in the future someone will come on here with a story similar to yours and you will be able to help and advise them.that's how it works.
john.

mucjud13
06-21-2009, 01:45 PM
Hi Ddrk, I inject meth but my first Rheumy I had suggested injecting in muscle of abdomen a and alternate sides every week.
just a suggestion.
judi
HAPPY FATHER'S DAY YOU GUYS!

joyce
06-29-2009, 03:21 AM
Hi, it is great that you have a Doc with that much experience.
I am looking for a Dr. . Could you refer me? Thankx Joyce

Derek
07-06-2009, 11:45 PM
My liver function tests have risen even further and I have heard that
a herbal supplement of Milk Thistle Tablets once a day can help to detoxify the liver. Has any one heard or tried these tablets and is there
any contra indictaions with the WG meds. eg Methotrexate, septrim ect.

Thanks

Derek:(

Doug
07-07-2009, 04:23 AM
Derek- The person most likely to have an answer to this question is Sangye. She currently is unable to access this website because of internet connection problems. You might sent her an e-mail for an answer. She has been having issues that looked like she might have to be hospitalized, if you recall (or happened to read the two notes from her that I posted for all to see). Other than that, your best- and safest!- bet on non-traditional treatments for anything related to Wegener's Granulomatosis is a doctor or pharmacist with knowledge of the interactions you are concerned with. Personally, where I have a disease that can kill me if bad or ill-informed decisions about my medications or care are concerned, I tend to stay away from non-traditional treatments and stay with the hard-learned treatments known to work. That said, stand back for the rebuttals! Ha!

Jack
07-07-2009, 06:08 AM
Have to agree with Doug. My clinic always has notices pinned up warning against taking various herbal remedies because of interactions with prescribed drugs. It seems to be a common belief that "herbal" means "harmless"!

Derek
07-07-2009, 06:31 PM
Thanks for the advice. I think I will give them a miss as after reading your comments and thinking about it, if they worked the doctor would give you them.

Thanks

Derek:)

mucjud13
07-08-2009, 01:00 AM
My doctors concluded that my liver enzymes were high due to excessive fatty tissue surrounding my liver which they said can raise liver count.
Through an ulta sound 2 last week the results were the above read by the Radiologist doctor. So, they found a cyst on my liver but nothing threatening thank GOd.
Hope this helps
Judi

Sangye
07-13-2009, 01:31 PM
Derek, milk thistle is a very mild liver detoxifier and also has the ability to repair damaged liver tissue. It's one of the most studied herbs--lots of research that demonstrates its efficacy and safety. I can't say for sure what is safe for you. Generally people tolerate very low doses of milk thistle just fine. The tincture is typically easier to take low doses--even a couple of drops a day is often helpful.

Herbs are not in MD's toolboxes. They have no training in botanical medicine, or in holistic methods whatsoever. So it's better that they don't get involved with them. It has nothing to do with the safety or efficacy of holistic methods. You don't want your attorney doing dental work on you, and you don't want your MD telling you which herbs to take.

There are a few herbs that are famous for their interactions with certain drugs. Sadly, we are led to believe that the herbs are unsafe, not the drugs. And that all herbs must be unsafe. If herbs killed the same number of people that prescription drugs do, they'd be banned on planet earth!

pberggren1
07-14-2009, 05:56 AM
It's to nice to have you back Sangye.