Experiencing a Very Hard Time

[txrepub4God]

Hi ya'll! I haven't been around much, as I'm having a hard time with various areas of my life lately. Unfortunately, I had to make the terrible decision to put my very sweet, very special dog, Kota (blue heeler), to sleep last week. She was 12 years old & I'd adopted her from my little sister about 10 years ago. She had cancer & the tumors just took over my poor baby's body. I knew she was suffering & she finally stopped eating & couldn't breathe well. My husband & I stayed with her the whole time & held her until she left for Heaven. She was the smartest dog I've ever had, was my strongest protector, and she was always by my side. I never had kids, so my dogs are my children, & this is the hardest part of being a furmommy.

So, not only am I hurting from that, but I've been sick with some kind of UTI & sinus infection for a month & not getting better. I'm almost done with a round of Amoxicillin, but still completely miserable. Been running fevers every night, up to about 101 degrees, no appetite, extremely sore/swollen tongue, sore throat, tons of snot/mucous, chills & sweats, and just feel like utter crap. I'm also tapering off prednisone at the request of my rheumy, but I think it's making me feel even worse. I'm down to 2.5 mg, and am supposed to stop taking it altogether by next week. She didn't give me a reason why she was wanting me off it, but I'm nowhere near remission & actually feel worse now than I did back in May when I started all these meds. I'm very discouraged about the Wegs & treatment not working. My rheumy is switching me to azathioprine in about 5 weeks, but I don't feel as though the Cytoxan has done its job at all. The only thing Cytoxan has done is made me almost 85% bald & it's still falling out. I was putting off washing my hair this past week because I knew what would happen. Sure enough, I took a shower last night & left half my hair in the bathtub. My husband held me as I bawled & told me I'm still beautiful, but it was just a hard thing to see.

My husband is also getting ready to leave early next year for another deployment for the Air Force, & he'll be gone 6 months this time. I'm so sad & worried....He only has 4 years left & I want him around for a long time. I'm just upset about him leaving & very worried about his safety.

Sorry to be a downer....just been a hard few weeks!


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[annekat]

Teri, I'm very sorry about your precious dog, and thanks for the pics to show us how beautiful she was. I don't have kids either, and my pets are my family, too. In my case they are cats. But it is always heartbreaking for anyone to have to let them go. I'm also sorry about your husband's deployment. And the hair loss. You don't need to apologize for being a downer. That is what we are here for, to listen to what you are going through. We all have those moments and need to talk about them in detail sometimes.

I'm very uncomfortable with your rheumy trying to force you to quit pred before you feel ready. I also wonder if she has had you on enough during the whole time you've been on CTX, which would influence your getting better or not. They work together to curb inflammation and disease activity. CTX did very well for me. But every case is different, which is why I don't think your rheumy should be so rigid about your pred tapering schedule. And it seems questionable to put you on a less potent med, AZA, when the stronger one hasn't worked. Maybe you are a candidate for RTX. How much expertise does this rheumy have? I wonder if you should try to see, or have your doc consult with, a real specialist in WG, such as those at the Cleveland Clinic and a few other places. I have not done this myself and know it is easier said than done. Lists of specialists are available on the Vasculitis Foundation website and patient-recommended docs appear on the Vasculitis: Journey of Hope website. Someone may have posted these links for you earlier on. In any case, be assertive and let the doc know how unhappy you are with how the treatment has gone. Your bloodwork should be an indicator, too; I'd think it should pretty good before she takes you off pred, and she shouldn't do it while you are sick with sinus infections and a UTI. Getting down to 2.5mg is an accomplishment, but it may be part of the reason you feel so sick. And the "sinus infection" could actually be WG; not sure about the UTI.

On the other hand, she could be switching you to a milder immunosuppressant because the CTX is interfering with your fighting off those infections. There are so many ways to look at these things.

Just my 2 cents worth. I'll be thinking of you, and keep us updated.

[Erin2014]

Hi Teri,

I'm so sorry about Kota - what a beauty!! I'm a dog lover too and Oreo, my husky/sheppard cross is my love, he gives unconditional love and he was my faithful companion when I was really sick last year. I feel for your loss

Between you medical issues and your husband's deployment you have a lot to handle...take care of yourself and go back to your rheumy if you're not ready to start your new meds. It took me a while to realize that we are our own advocates and sometimes we have to push back or ask more questions.

I hope you feel better quick!

[Birdie]

The only thing Cytoxan has done is made me almost 85% bald & it's still falling out.

Sorry to be a downer....just been a hard few weeks!

In the midst of a downer remember this as a pick you upper: The world will look much brighter in five weeks, after changing to Azathioprine. Cytoxin side effects has likely caused much of the physical part of your misery, not to mention hair loss. I know, I am a man, being a man it didn't bother me, plus it sounds like you've lost more than I did. Mine grew back better than before. Also, side effects from cytoxin are not all physical, it makes everything seem extra crappy/harder to take/distorts perception, etc. Switching to Azathioprine was like stepping into warm daylight from a dark wet dreary place with no name. Seems like it took less than a week.

I've been the deployment route as well as cytoxin hell. Be proud of your husband even tho cytoxin is worse. Can't he get exempted from deployment on a family hardship? Taking care of a spouse with a severe illness SHOULD be more than enough.

[annekat]

Cytoxan was not that bad for me. I already felt so crappy at the beginning that I barely noticed it. By the time I felt quite a bit better, which was within a couple months, I'd gotten used to the side effects and didn't notice them much. The wrong thing was that I should have been taken off it a lot sooner because of the risks of bladder cancer. I did drink lots of water. I'm now on methotrexate, and although I only take it once a week, the side effects for those two days have taken longer to get used to than with the CTX. I get sort of a morose feeling from it, for lack of a better word. Just lately, that has been a lot better, and it depends a lot on if I've gotten enough sleep. I've never had azathioprine, so can't comment on it. I just think it's unusual that someone doesn't get better on Cytoxan, as you say you haven't, Teri. Everyone is different, and some drugs just don't work for some people.

[renidrag]

Teri: Cytoxan is the heavy hitter for this disease, it should be working by now, and in concert with Prednisone, as Anne said, usually gets you to a place where you can then get on a maintenance routine. I would be very leery of dropping pred so quickly and to rotate to AZA so soon. I also would urge you to get another opinion as soon as you can. Check Vasculitis website for local or at least one that would accept help from a professional. Best to you. Thank you to you and your husband for your service, sorry it has to come at this time.
Dale

[Debbie C]

Teri,first of all, I am sorry to hear you had to put your dog down. I had a german shepard you had cancer and after surgery it came back once she went into heat. And the vet said he knew that would happen ...wth ! But I had her 17 years so I know how hard it is for you.
Secondly, I think you should go to the er,especially with a high fever. Maybe they can call an expert for a consult. Like Dale said you should get a second opinon. I don't think you should be coming off the pred so soon and so fast.
Third..that is a great idea Gary had about seeing if your hubby can get a hardship leave,
Take care and rant anyway anytime !

[Alysia]

Dear Teri,
I am so sorry for your loss of Kota. Its heart breaking.. we have here somewhere in the Forum a beautiful poem that Carrie wrote for her dog after he passed... if I will find it, I will copy the link.
As for UTI, I have them constantly. Usually in the labs they check what kind of antibiotic can kill the specific germ. It was never amoxcillin. What works for me is nitrofurantin and ciprofloxacin. Uti can be such an anguish. If you are now on any antibiotic then the labs CANT tell anything about the germ. If the antibiotic is the correct one, you start to feel better in 24 hours. Otherwise, ask for another antibiotic. Meantime drink a lot. AND, once your uti is gone, keep a maintenance dose of antibiotic for about a month.
Sending my prayers. Hang in there.

[Birdie]

What works for me is nitrofurantin and ciprofloxacin. Uti can be such an anguish. If you are now on any antibiotic then the labs CANT tell anything about the germ. If the antibiotic is the correct one, you start to feel better in 24 hours. Otherwise, ask for another antibiotic. Meantime drink a lot. AND, once your uti is gone, keep a maintenance dose of antibiotic for about a month.

My last UTI was extreme. Cephalexin was the final solution. And just like Alysia said, 24 hours later I could tell it was working. They didn't let me drink much water but always had multiple IV's feeding fluids and other antibiotics for non UTI infections.

[Birdie]

Third..that is a great idea Gary had about seeing if your hubby can get a hardship leave

Not even a leave of absence, just exempted from the deployment. They assign other duties locally while his unit is deployed. Their choice is none of anyone's business, she may not really need it, may have other family to look out for her, he may be too dedicated, etc... I just wanted to bring up the thought in case it had not occured to them.

Anyway Teri, hang in there. After a year and a half, getting off 150 mg a day of cytoxin changed everything for me. I have had none of those horrid side effects on Azathioprine.