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!


2222

[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 :sad::sad:

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 !:hug2:

[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.

[NikkiNicole]

I am sorry you are still struggling. Losing animals is the worst thing ever. I would be devastated. My corgi, Loki, is my constant companion and he snuggles me when I am sick. I don't know what I would have done if I had to face this diagnosis and disease without him.
I hope you start to get some relief soon. I wouldn't just wait out fevers with a UTI. That's usually the kicker that the advice nurse tells me to get to the ER. Keflex is the antibiotic that usually works for me and they give me a BIG dose that I take 4x a day. I wonder if you need a stronger dose of something that you take more frequently? Or ... if it's not a UTI at all and they need to be looking for something else.
I'm with everyone that I would push for RTX if the CTX isn't working. I pushed for mine and am finally looking at it. We are saving CTX for the more dangerous days that I hope never come but MTX didn't work, CellCept isn't working and I am among a small group of people who cannot metabolize AZA so it isn't even an option for me. I'll just have nothing but bad side effects and be miserable. Good to know ahead of time, eh?
You cannto be suffering for this long without answers. You need to get to a point where you are at least a wee bit comfortable because if your husband gets deployed ... you can't be in this condition and alone. I am sorry you are facing that too. Please thank him for his continued service to our country. They do not get thanked enough, especially when they have to get jerked around by our president. You're right ... the leader of this country (if you can call him that) doesn't know the first thing about anything ...
Thinking of you and hoping there is a happy day ahead for you. (HUGS)

[annekat]

I join the others in thanking your husband for his service, and you, for being behind him and having to deal with the repercussions.

[Treesie]

I, too, cannot metabolize AZA so the Dr. had me on CellCept until starting me on Rituxan, due to my recent flare.

Sent from my XT830C using Tapatalk

[Trena]

Dear Teri,

I am so sorry to hear about the loss of Kota. I also want to thank your husband for his service! I can't imagine how difficult that is with his upcoming deployment. I did like what I read in a previous post about him possibly being ale to get an exemption from deployment!

From what you said about not feeling well I am just a little concerned. For me when I was on Cytoxan and Prednisone and I also started to fell ill hand had a fever of about 101. I waited for about three days to call my doctor because I thought that my body was just fighting off an infection. When I talked to my doctor on the 4th day he was extremely concerned because he said that a fever while on this medication is not a good thing. I went to my primary doctor and they discovered that my oxygen was at 75% and I was immediately admitted to ICU for over a week and ended up having PCP Pneumonia. I should have listened to my gut and went in earlier, yet I wasn't wanting to be a "bother". When I was in ICU my rheumatologist said that they had to take me off Cytoxan because my immune system was shot and it was too rough on my system. The good news is that my WG looked so much better and they considered me in remission; and at that time I was switched to azathioprine with prednisone with slowly tapering down on the prednisone as part of my "maintenance" (not "treatment" for the WG). I am not a doctor and yours might have a reason for doing what he or she is doing for your treatment; I just wanted to share what my doctor did for me. I am also sorry to say, yet I still continued to lose my hair from the Cytoxan still daily a good three months after I stopped taking the Cytoxan which my doctor said was normal on some patients. With the continued loss of over 90% of my hair I chose to buzz cut my hair last week. I am happy to say that I do have 1/2 inch of all new hair growth and no bald spots! I'll take it and celebrate whatever I can get! I would never have chosen this, yet I am embracing it and living in my new reality (I even go out not wearing a wig sometimes...just my buzz cut..it's a little liberating). The was NEVER me as I have always had long hair like you previously said you have also always had. I don't mean to be a "downer" with what I said about hair loss, yet I appreciate knowing all the good and bad issues with this disease and just live in actual reality with where my life is at.

Please don't ever feel bad about being a "downer". I love how we are all here to support and encourage each other. This is NOT an easy journey, yet at least we are not alone in our struggles and feelings. I pray that you will have some answers with your medication and start to feel better.

Hang in there! Again I am sorry for you loss and please thank you husband for his service!

Trena

[Birdie]

With the continued loss of over 90% of my hair I chose to buzz cut my hair last week. I am happy to say that I do have 1/2 inch of all new hair growth and no bald spots! I'll take it and celebrate whatever I can get! I would never have chosen this, yet I am embracing it and living in my new reality (I even go out not wearing a wig sometimes...just my buzz cut..it's a little liberating). The was NEVER me as I have always had long hair like you previously said you have also always had. I don't mean to be a "downer" with what I said about hair loss, yet I appreciate knowing all the good and bad issues with this disease and just live in actual reality with where my life is at.

Ok, all the hair loss talk got me thinking (dangerous fer sure), and remembering. Now I'd like to share a couple pictures of a chemo induced wig shoping trip long ago.

2224

2223

[Debbie C]

Very pretty both ways

[MaxD]

No matter how ill and stressed we all are with everything going on in our lives, this forum has always been helpful and brought us together in community. I hate to read irrelevant comments that can only be divisive. I refer, of course, to the two members who chose to make disrespectful and unwarranted remarks about our president - this is unfortunate and I expect the offending members realize this and will apologize for it. Please realize that no matter how stressed your lives may be, and no matter how strong your political opinions may be, this is not the forum for them. Your comments only stand to lose you sympathy - even among people with like political views. And for those whose views strongly differ, your comments only add stress to their minds and bodies.

We all share one common disease and our humanity - let's not get off track.

[gilders]

Teri, I'm so sorry that you had to put your dog to sleep. I have changed my avatar to my Lakeland Terrier that we had to put to sleep (7 years ago) in support.

As for the change from Cyclo to Aza I managed very well. I couldn't tolerate cyclo so it was stopped and replaced with Aza (this was over 20 years ago before the likes of Rituximab). This regime worked well and has worked well for every relapse (except my most recent one) since. But this was in conjunction with high dose pred. I have always wanted to reduce my pred dose as quickly as safely possible. If you still have severe symptoms of a flare/relapse then, perhaps, you need to up the pred dose.

[annekat]

Gilders, I love the pic of your little dog and think that is a very sweet gesture in support of Teri in her time of loss. If I had such a picture, I would now do the same.

[Birdie]

No matter how ill and stressed we all are with everything going on in our lives, this forum has always been helpful and brought us together in community. I hate to read irrelevant comments that can only be divisive. I refer, of course, to the two members who chose to make disrespectful and unwarranted remarks about our president - this is unfortunate and I expect the offending members realize this and will apologize for it. Please realize that no matter how stressed your lives may be, and no matter how strong your political opinions may be, this is not the forum for them. Your comments only stand to lose you sympathy - even among people with like political views. And for those whose views strongly differ, your comments only add stress to their minds and bodies.

We all share one common disease and our humanity - let's not get off track.

Thank you for your eloquence, as well as intent.

[Birdie]

Very pretty both ways

I might be able to find some pictures with henna tattoos. :) :) :)

[annekat]

Thank you for your eloquence, as well as intent. I agree, thanks are due to MaxD. It is also possible that not everyone has read, or is aware of, the forum rules, which I believe appear near the top of the home page. These include refraining from comments about politics or religion. The rules have served us well.

[Dirty Don]

ANNE...you ARE soooo nice...I wish I was as nice as you...that being said I will keep my mouth shut about this stuff cuz there are others who have been on here who have no sense of otherness and are only interested in themselves and the problems OTHERS create for them...ohoh...PUTIN, where are you!!!! BTW, I do need a pic of him!! NOT!!! Best to all, sincerely, right or wrong...did I just say that...again...sorrrrrrrry...hangs head, sips coffee, wonders about the world...

[Birdie]

ANNE...you ARE soooo nice...I wish I was as nice as you...that being said I will keep my mouth shut about this stuff cuz there are others who have been on here who have no sense of otherness and are only interested in themselves and the problems OTHERS create for them...ohoh...PUTIN, where are you!!!! BTW, I do need a pic of him!! NOT!!! Best to all, sincerely, right or wrong...did I just say that...again...sorrrrrrrry...hangs head, sips coffee, wonders about the world...

LOL... Disturbed humor may be a symptom of living in the Arizona heat. Put down the coffee and start drinking more water, dehydration can cause as many unexpected side effects as prednisone.

[annekat]

Don, I am not always THAT nice, but I'm glad you think so. Niceness can have its drawbacks, like getting walked all over. Not on here.... in other places. It can be a tricky balance to strike. As for coffee.... it is also a trigger for vertigo! In those who are susceptible to it. So for me, today, it's black chai tea, with half and half. Less caffeine. And only one cup. Almost as good as coffee, but not quite!

[txrepub4God]

He's not able to get exempt from deployment because I do have close family nearby (sister, aunts, cousins in the same town), plus next-door neighbors that are really great & have promised to watch out for me. I wish he could, though!

[Birdie]

He's not able to get exempt from deployment because I do have close family nearby (sister, aunts, cousins in the same town), plus next-door neighbors that are really great & have promised to watch out for me. I wish he could, though!

Make sure you post here often enough that we know you're OK alone, almost.

[Jaha]

Teri, I am so sorry for your loss of your loved one. I lost one of my babies last year to dear hunters. I just wanted to add to the advice about your infections and fevers, I would definitely consider going to the ER. I have had to go and be admitted for several infections over the years. I don't think that you are taking a strong enough antibiotic, you have to remember that right now you have nothing in your own body to even fight an infection. It only stands to reason that you need an IV antibiotic right away and most likely a second opinion on the treat you are getting. I have been thru all the treatments in the five years and I'm still taking 8mgs of preds. I wasn't given CTX at first and it really has delayed my progress for remission, not to mention the damage I now have from all the txs and preds. Do yourself a favor a go get some IV antibiotics and a Wegs specialists, that will relook at your present tx. Please take care of yourself. Thank you, for you and your husbands sacrifices for this great Country. Wishing you all the best!

[Alysia]

ANNE...you ARE soooo nice...I wish I was as nice as you...that being said I will keep my mouth shut about this stuff cuz there are others who have been on here who have no sense of otherness and are only interested in themselves and the problems OTHERS create for them...ohoh...PUTIN, where are you!!!! BTW, I do need a pic of him!! NOT!!! Best to all, sincerely, right or wrong...did I just say that...again...sorrrrrrrry...hangs head, sips coffee, wonders about the world...

I dont agree with you Don, that people here have no sense of otherness etc. etc.
Sometimes people experience too much anguish, but it doesnt mean that they dont care about the others.. especially here..
But since I love you and you asked for Putin, I send him to you on a horse...

2226

[lag713]

I would love to continue this trend of Putin pics with more absurd pictures of Putin without a shirt on (he must be one of those guys at the gym that stares into the mirror in love with his own reflection!) but I will let you search for "Putin no shirt" for yourselves. I find the photoshopped ones with him on a bear and a great white shark to be particularly amusing. This thread shouldn't get too far derailed from Teri.

~

Teri - I want to share my condolences for the loss of your sweet and beautiful dog. As another child free woman, I know how much our dogs feel like children and part of the family. I lost my first dog about a year ago and I was a mess. I adopted her when I first started living on my own and she became so special to me. She was my partner in crime and I miss her a lot even now. I turned all of my grieving into love and affection toward our other dog but I was very, very close to adopting another dog.

This may be terrible advice because you are not feeling well and don't need additional responsibilities or work but maybe adopting another dog would help make your husband's deployment a bit easier? I'm so glad that you have family nearby. I know that having support from loved ones makes all the difference in the world.

[txrepub4God]

Lag, thanks for the condolences. We do have 3 other rescue babies - a 10-year-old Chesapeake Retriever (sadly has cancer, too, but doing well so far), a 6-year-old Puggle, & a 4-year-old black weenie dog. My husband & I married about a year & a half ago & had 5 dogs between us. We've lost the oldest 2 since then, but 5 dogs was way too many for my energy level. :). I think we're more a 2-dog type couple. ��

Teri

[Birdie]

We do have 3 other rescue babies
I think we're more a 2-dog type couple.

If you have the time, space and money then there is no such thing as too many rescues. Sooo many need help... today.

[annekat]

If you have the time, space and money then there is no such thing as too many rescues. Sooo many need help... today. I agree. I cannot take in a rescue dog but all of my family members and most of my friends and acquaintances do. I have taken in rescue cats, but one must keep in mind the cost of upkeep and vet bills. The point is, instead of buying a dog from a breeder, take in a rescue, or two or three if you can. You and your husband are the best kind of dog people there are, Teri.