Please give me your advice ~~ i'm a little frustrated!

[Auntie TooToo]

I'll try to keep this as short as possible .... due to several infections, my Rheumatologist has stopped my treatment for WG since prior to my last hospital stay in December 2013. Since that time, I have had a couple of other infections as well which led both her and my Pulmonologist wanted me to consult with an Immunologist to see if he could help sustain my immune system while allowing me to tolerate treatment. Consult results were pretty much what we expected ~ no antiboties or immune system ~ so I just completed my 2nd IgG Weekly Sub-Q Infusion last week.

My rheumy cancelled my last appointment because she said really couldn't do anything until after I say the Immunologist {which I understand - they all say that I am a high risk case}. I guess my frustration is that during all this time, my WG symptoms are getting worse and I really don't know how much more of this I can stand! Don't get me wrong, I've been very please with my treatment from my rheumy & I understand the position she is in as I have more that one issue going on which causes her to proceed with caution. But I am so tired of hurting ....... there has to be an answer

[Debbie C]

Auntie, I am sorry you are having all these infections,arre the infusion they are giving you helping at all.How are your sysmtems getting worse ?

[greenjeep]

Are you on prednisone? It should help with symptoms. The chemo could weaken your immune system, but to that extent? I had an infection once while on MTX and pred, but they just gave me some high powered antibiotics that they give cancer patients - can't remember the name. But I didn't stop treatment.


Sent from my iPhone while driving on the freeway.

[Debbie C]

Greenjeep....don't text and drive !!!!!!

[Dirty Don]

TooToo, like you I don't know that there is an answer at this time for your position. But, one thing to consider strongly is your stated 'tired of hurting'. What causes the hurt? That has to be addressed so you can feel well enough to battle back. Just a thought...and remember that as long as one feels pain then one still has the opportunity to fight the causes of that pain. Best to you.

[tankerB25]

TooToo, sorry to hear about your infections but you have to get after the docs to treat them! I had sores on my feet but didn't feel them because I have no feeling in my feet due to nerve damage from a flair. Short story...they got infected and I ended up losing a couple of toes, middle on right foot and left pinky toe and the bone behind it. If your ifnections are open sore types you have to get them treated specifically. Even with treatment I lost those toes in order to keep the infection from spreading in the bones. They took me off methotrexate but left me on the pred, about 30 mg if I remember right. I also got high doses of different antibiotics...I don't want to be a gloom and doom kind of guy I'm just saying...BE YOUR OWN ADVICOATE...good luck with your treatment!

Steve

[Auntie TooToo]

Thanks for your response & concern. I've only had 2 infusions thus far; didn't get to do this week's due to side effects {alot of nausea & vomiting}. My Immunonologist prescribed Zofran, it helps {at least today for the first time in 2 weeks I ate solid food :rolleyes1:} and is changing the IgG to another brand. He explains that different brands use different preservatives & that is what causes these side effects. So I'm waiting on insurance approval for new med & then for it to arrive; hopefully back on tract next week. As for the infusions helping, my doc said that it's usually about 3 months before we will see any results with my immune system and antiboties. As for how my symptoms r getting worse? My pain level seems to be increasing and can't even manage to stand for more than few minutes without having extreme lower back pain. And I'm not even gonna talk about the SOB or extreme fatigue issue! Although I been off my chemo med since Dec 2013, I am currently on pred 20 mg daily {which is down from 120 mg -THANK GOD}!

My doc's proceed cautiously with me due to having so many health issues going on due to WG. I also deal with a cryptococcal lung infection for which I have been receiving treated since 3/2012 along with TB. My rheumy stopped treatment first due to me having to have oral surgery 10/13 due tooth abcess; then I contracted pneumonia and ended up back in hospital 12/13. I spent few weeks there and since was waiting for pulmonary clearance; in the meantime got sinus infections/blockage :sad:. Therefore the reason for the consult with the Immunologist to see why I keep getting so many infections {these r just few to mention}. Apparently, my immune deficiency is something that has existed for awhile ... not just due to immuno-suppressent medication.

[Deborah T]

Hope you feel better soon. It really sux doesn't it? You have friends in this support group who know exactly what you are going through. I completed my RTX IV treatments last month. Last week I hurt so bad that I was hardpressed to
understand why I put myself through that therapy... HOWEVER, just like my rheumy said, it is getting better. Able to sleep good at night and stay awake without naps x 3 days and finally finally finally without that horrific pain, fibromyalgia.
I guess I am for the first time heading towards remission.

I hope you are able to beat these dang infections and get some well deserved relief.

Blessings -
Deborah

[mishb]

Greenjeep....don't text and drive !!!!!!

She's allowed to - she's a jeep :flapper:

[mishb]

I'm sorry Auntie, that you are going through this.:crying:

I hope these infections and other issues will get controlled so that you can start treating WG again.

I'm not sure what advice to give - except maybe pred for the pain.

[Lilly]

Dear Auntie TooToo I am so sorry for what you are going through. It sounds like you are being handled very carefully by many doctors. With having to wait for insurance to approve medication, and the time it took to diagnose you with wegeners, your other health issues,you are in a terrible difficult spot. I wish there was a way to control your pain, even just to make it bearable....No one is ever pain free, but if you could just cut yours in half, you could probably mentally heal faster, and have the will to fight your physical issues. Chronic pain is something I know a bit about, as I worked for a Pain Dr. for 6 years, and then, I am now taking meds for it myself. Having a lot of doctors sometimes complicates the issue also. I ALWAYS use ONE Pharmacy so I will Never have a medication issue, with two meds not supposed to be taken togather. I think all the prev.posts to you have given you some great advice. I have personally found that what Steve said...BE YOUR OWN ADVOCATE!...Is something I have found you have to do. I do not deal with the many health issues other than wegeners that you do, but if you feel you need some pain meds, DONT be afraid to ask. Its sad to say, but we are ONE of many of their patients, and we HAVE to speak up sometimes. Pain can really take you down, and you need all the strength you can get. I wish you all the best, and I hope your condition gets better very soon. Don't give up, you know we are all here for you. Don't be afraid to ask ANY question. We truly care for you. Praying for you and keeping you on my mind and heart. Keep us updated! We are pulling for you~

[Alysia]

Hi,
I also had lots of infections: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3465-infections.html
but mine seems much less tough then yours. still, the treatment should be BOTH for wg AND infections. maybe you need to consult with another wg-doc ?