View Full Version : Tamiflu/ flu

11-14-2009, 01:17 AM
Got it from the prim. doc.I felt like someone had run over me with a truck before I got home . took my first dose after I got home and just now the next. I didnt even try to go to the clinic because I know that if you have a fever they wont give it to you.
I felt bad going into the food store to pick up sick food in preparation of being sick. I had to pick up my son from a Boy scout meeting too. Walked in with the collar of my coat around my mouth and nose. And left asap. I had to explain to my family that if my temp goes higher than 103 I have to go to the hospital. They were a bit nicer to eachother then but still messy. oh well. back to bed for another rest.

11-14-2009, 02:00 AM
rest and fluids and get well soon!:)

11-14-2009, 02:55 AM
I hope you get better quickly. Please let your hubby take care of the kids.
Remember-you need your rest more than anyone in the house!

11-14-2009, 11:39 AM
Hope the tamiflu helps you. Have a good sleep.:D;):)

11-14-2009, 12:46 PM
I'm told Tamiflu is usually pretty quick to act so I hope you're feeling better very soon! As Doug said, rest and fluids!!

11-15-2009, 12:59 AM
Thanks to all of you. I did lay about and nap off and on all day. I think the tamiflu is helping. You all know what happens when you are laying about and not doing anything, i am sure you all do. THINK , oh poop. This again is my mind wandering, Could I have been sleeping through this feeling I have at night when I was taking the cyt. before bed? I just started taking it in the am two days ago and feel fluish? I know it is different for everyone but........could this be the cyt. kicking my butt? I am going into my 5th month but hadnt taken it in the day time.

11-15-2009, 03:44 AM
Could be. That's how I feel on ctx from day one. It's too toxic to me.

11-15-2009, 04:52 AM
I tolorate most meds without side effects or problems. If this is it and this is what I feel the rest of the treatment then I am going to have to take it in the afternoon and drink a gallon or so before bed. Make myself pee in the middle of the night etc..

Did you say that you where taking yours at diiferent times ? instead of one dose? I would look for the thread but the kids are buggin me to use the computer too.

11-15-2009, 05:06 AM
Yes-- I had to split mine into 3 doses and take it with each meal. That was only because all-at-once caused severe stomach pain.

Taking ctx at night might make you feel better temporarily, but you're really putting yourself at risk.

Bladder cancer is one of the risks mentioned above. There's also an immediate risk of hemorrhagic cystitis (bladder hemorrhage). Ctx is very toxic to the bladder and can cause it to start bleeding. This is extremely dangerous and can happen at any time.

To drink enough water and pee enough all night, you'd be up all night. No way to get the sleep you need. And drinking too much water at once is very dangerous. You can actually kill yourself. Please check with your doc about taking it at night, okay?

11-15-2009, 09:06 AM
Exactly, as Sangye says! The effect of Cytoxan was pretty straight forward for me: I vomited until my doctor put me on something for the upset stomach (don't recall which rediculously over-priced drug it was, but it was one of the big brands), then, a few months later, my Cytoxan dosage went down to a point I tolerated it pretty much without the ridiculously over-priced name brand drug to help.

11-15-2009, 12:48 PM
I will call on Monday am. Know one except all of you gave me any warning about the bladder. i have had blood in my pee since before I was dx'd too. So they can't go by that unless the amount is really great that it increases. I hate to say it but the pain killers make a world of difference too. Anyway thanks again and hope you all feel better to well. Wouldn't wish flu or any of this on anybody. Need some kitty love going to search one out and make that motor pur! The healing power of love!!!!

11-15-2009, 01:16 PM
I can't believe your docs didn't warn you about the 2 bladder risks! :eek: They are famous and so easily preventable. I'm just mortified. Even my awful first rheumy completely explained it to me before I started ctx. Make sure you tell the JHU doc about it. They may need to check your bladder and make sure there wasn't damage.

11-15-2009, 02:46 PM
So are flu-like symptoms common for immun.-supp. drugs? I am not on cyt. rather metho.--have been 2 months or so and pred. (various doses) for about 4 months. however, since starting the metho. I have felt like I have some kind of cold/flu hanging over my head at all times. It doesn't really take me out just hovers around and makes me feel like crap, short of breath, tight in the chest, and overall scared something bad is coming on. I have had both an xray and a ct scan and it shows nothing--besides my WG nodules. Do I maybe need to consider this drug/dose is too toxic for me? Oh, all my lab results (drawn once a week) look good.

11-15-2009, 03:22 PM
Snooz23, you could be having a drug reaction to the methotrexate. Feb of 2009 the rhuemy starated me on Immuran and I was on it for two weeks and felt horrible , then it got really bad chest pain, back pain, high fever, anxiety and felt like it was the flu. I got so bad, I couldn't get out of bed. Went to the hospital ER and they took me immediatly. It was the Imuran. I'm on cellcept and it is doing pretty good. If you have chest pain, that's not a good sign. Hope you get well soon.

11-15-2009, 03:35 PM
No warning only " I dont like to leave anyone on these meds to long." Yet here I am. I have experienced all of the above at one time during treatment in the begining and after.
I know that these meds are immune sups. something I have always tried to build , like most people with kids I imagine. But now I just need to get through this and try not to take my kids down with me. my husband is a burrow and I realize that now, but My kids are great kids with me and I hate that I have to put this on them but they are the only ones around me all of the time. So feeling sorry again for myself , Time to switch the laurdry and get ready for the morning. Have to work in the am and all five days next week.

My dentist is going to see me Tuesday. For cleaning and lecture as usual. I know he cant work on me and I warned them too.

11-15-2009, 09:29 PM
I too am totaly surprised that no one mentioned the bladder and consequences of not flushing the ctx. I have had now 2 cystoscopies (last one was on monday and all is good), and will have one every year. I always took my meds in the morning and had at least 2 liters of water

11-16-2009, 12:45 AM
Hang in there Onatreetop, I know how hard it can be working and taking care of the whole family. Your kids will do great. My kids are four and eight years old. When I was feeling bad ( could not do much) I just play card games in bed with them. We play alot of war and go fish. I use to work at a doctors office but got so bad I had to quit. I'm thinking of going back. I usually let my kids know whats going on (how I feel). I communicate with them all the time. I have taught them to do household chores that are age appropriate. So glad you are here.:)

11-16-2009, 10:47 PM
Thank you all again. It is nice to talk to people who actually understand. I am feeling better today. Although the #4 kid is now down. I am still taking the tamiflu and will til it is gone. Going to work helps to take my mind out of the house for awhile. A therapy of sorts. Always has been.
I have a big week ahead of me. A house everyday. Next week I only have two because of Thankgiving, short week. I will be cooking dinner for the inlaws and mom. So that gives me time to clean my house and bake. I hope this Flu doesnt rebound.
Everyone that did talk to me about the meds seemed more worried about the pred than the cyt.. Except all of you again. That is just one reason of many reasons I am so glad to have found this site and all of you.

11-17-2009, 01:16 AM
I know this is not going to be paid attention to, but don't over do it! Especially after flu on top of things, this might be the time to remind everyone any help they give you now will be rewarded by a healthier you later.

Even if you didn't have WG to contend with, jumping into a Thanksgiving dinner right after flu would be crazy. If your family doesn't understand, get a new family! Ha!:)

11-17-2009, 02:33 AM
I agree with Doug (well, maybe not about getting a new family...). I bet a lot of us reading your plans for this week and next are cringing!

11-17-2009, 04:51 PM
I should have mentioned that that was optional. Even over-demanding families can be supportive, loving, helping, wonderful people once they get past family events like Thanksgiving and see how the extra wear and tear on their beloved weggie wore her/him down to a stub!

More likely than not, you'll want to keep the family. Just watch yourself, and take a seat once in awhile, especially if you start to feel over-worked.:)

11-18-2009, 12:03 AM
I know it seems like a lot and it is. But I will rest at every chance I get. I have something else to do this week that will be fun...... My mother and I are going to see New Moon at 12:01am Friday morning just so we can see it before my daughter!! HA HA!! The theater is opening special for the release Late Thursday and showing it in all theaters. Already got the tickets!

Yes am am crazy. But life would be so boring if we didnt do things in the moment.

11-18-2009, 12:12 AM
Good for you Onatreetop! Enjoy you deserve it!

11-18-2009, 01:29 AM
Thanks ! We all deserve fun! Life is so serious most of the time that I believe we all really need to take time do things we enjoy. I am kinda burned out going to the RA and prim and lab thats no fun! And required so............soak up what life you can and live in that moment!! I am playing Bunko with all my new lady friends earlier the same evening.It will be a fun packed night and morning!! A little food, wine and then popcorn and soda!! There goes the diet! Oh well why not. I will work it off at work the next day. Live, Laugh and Love!!!!!:D

11-18-2009, 03:43 AM
Yeah, it's so important to have fun. While it's easy to have your life become filled with doctor visits and procedures, we of all people have learned how short and precious life is. Gotta savor every laugh.

11-23-2009, 06:23 PM
onatreetop have you been to the Lady Gaga concert yet, how was it?

11-23-2009, 11:20 PM
Not yet. December 3rd we go to Camden for the show. It will be different. She is vry dramatic. I keep asking my dghter if she is sure she wants to go? I listened to the album and well.......... She is like an extream Maddona of sorts. Not to great for a twelve year old I think. To have a lot of fun and get a bit wild would to be to go with a good friend that is a crazy adult such as myself. I am working on it.

Went to the movie with my mother! What a mad house! It was crazy. I have never seen so many people in one place. It was a good movie too. Went out with friends the next night and had to much fun again. Did get to talk to a therapist about my oldest son that is very chalenging right now. She told me about all my options and what could happen if he continues on the path of laziness that he has chosen. Didnt get it from my side of the family most definately. Anyway, The turkey is coming home with me today to begin the thawing andI have beengetting the house more picked up. Pointless really but it made me feelbetter being able to walk around again. Caught up with the laundry so I am starting the week in good shape.
Got my haircut! Lost another 5 pounds I swear. Feels great and I like it. More highlights to hide the onsetof grey. Made me feel better too. Now when I sweat I have to use a rag. The hair isn't there to hold it as much. I reallly look like I took a shower when I am working now. oh well thanks pred!! Lost 7 pounds! Took the weekend off the eliptical getting back on this morning. Let the sweat begin!!!! Going to be a busy week with dinner and work. A good friend, the lady how does my hair, wants me to go shopping with her on black friday. I have only been once before and it was with her. We laughed all that pm and am. It was funn butcrazy again!! I said I would never do that again and just pay the extra for what ever I was looking for. But she and I havea histarical time together. My family and I are tagging the tree on Friday too. Birthday party saturday at chuckie cheese, germ gel is coming with. And work at Dr. office Sunday.My week is booked.
I dont feel fluish anymore!!!!!!Either my body is getting use to the cyt. in the am or the flu is gone! Either way I feel better and ready to take on this week.

11-23-2009, 11:54 PM
I watched the Music awards last night, Lady Gaga is very talented. She reminds me of Madonna. Whitney Houston was great too! Was good to see her sing again. I tend to stay away from Black Friday, too crazy for me. Have fun Onatreetop! Congrats on losing 7 pounds! :D

11-24-2009, 04:21 AM
Just be careful spending a lot of time in crowds by shopping Friday, etc...

You just got over flu! Even if you weren't immune-compromised you'd still be more susceptible to other bugs. I know I sound like a party-pooper, but it's the reality of being on these drugs. Are there ways you and your friend can have fun without being in huge crowds?

11-24-2009, 06:25 AM
I definitely am with Sangye on this one. You are celebrating feeling better again, but the extra challenges of washing clothes, making Thanksgiving dinner, etc. should be suffcient "over-doing-it" for now (sit down and rest from time to time if you have to). Learn how to bark out orders to the family. I mean like a Marine drill sergeant, my friend: you are the immuno-suppressed one, and fatigue, exposure to crowds (even related ones!) is a recipe (receipt for the right-writing rest of the English-speaking world-~ Ha!) for respiratory infections. The gel's a great idea. If I don't "speak" with you or the rest of the US citizens on this site the rest of the week, may you all have a blssed and safe Thanksgiving weekend!:) Just don't overdo it.:mad:

11-24-2009, 11:24 PM
Thank you and thank you again! Happy turkey day to all also!! I will pace myself and the gel is in the car , purse, etc. I will , I promise, rest when needed. Between the cats and the crocheting I will be made to sit often before the big day.
When did you all get ENT docs? Do you all have them? I dont yet and wondering if I should be seen there too? No real complaints in those areas yet execpt the face pain that showed nothing on the catscan. It seems to have let up some since taking the allergy meds again.
That should have been a new thread? Sorry.

11-24-2009, 11:44 PM
I was under an ENT surgeon before diagnosis. I had lots of serious and unnecessary surgery and I was dieing by the time I was transfered to a rhumatology department in a different hospital. I have since been referred to ENT consultants on a couple of occasions and have little faith in them where Wegener's is concerned. I believe the ENT people nearly killed Doug too. :eek:

11-25-2009, 12:00 AM
You really have to go to a good ENT. I had one that was useless ( he did two of my maxillary surgeries)and he did not address the biopsy report( possible WG). The other two ENT's were great. Need to do research and get the best ENT who understands WG. This ENT who did my last surgery really helped open my Maxillary opening (sinus) so it can drain better. I still have chronic sinusitis, and take Bactrim every other day. I travel about 3 1/2 hours to see the ENT.:D

11-25-2009, 02:43 AM
Unless you have ENT symptoms, there's no need for you to have an ENT. (Facial pain is ENT)

This is a huge benefit of having a Wegs specialist at a major institution to oversee your care. My Wegs rheumy doesn't just send me to the specialist I need at JHU, he sends me to the one who sees all the Weggies.

There are 2 JHU ENTs named Dr Kim. Only Dr. Young Kim specializes in Wegs. He's excellent--really knows Wegs, explains things thoroughly, etc... I see him regularly, at his suggestion. He and my rheumy work together on all the Wegs cases, giving them each much more experience.

Onatreetop, are you still getting in to JHU?

11-25-2009, 04:08 AM
Luckily, all the major sinus problems I was having disappeared once my Wegener's was treated leaving only the damage done by the ENT surgeon.

11-25-2009, 02:33 PM
Close enough, Jack. I think the ENT doctors wanted to kill me, but they had to settle for ineffective treatment of a simple ear infection that left me deaf in my right ear and left with limited options to clear out the scar tissue, restore the ear drum, and restore some level of hearing again to that ear.

Sorry if attitude's coming out, but of all the specialists, they were the ones who claimed to have the most experience with weggies, yet left me with the least hope and satisfaction. Also, they were the worst listeners, the smartest doctors to hear them talk, and....!

I am not the one to ask about ENT doctors, I would suggest!:)

11-25-2009, 03:51 PM
Not my ENT at JHU! He's awesome. I had a hearing test after my appt with him last week. It showed normal hearing--just a little less in one ear compared to the other, but still perfectly normal. The tech wanted me to stay and discuss it with the doc, but I didn't think it was worth bugging him. I mean, it was normal, after all! I just said to leave a note saying I understood the results and would see him at my January appt.

He actually called me that afternoon to explain the results and remind me that I should call him if I have breathing problems or anything worsens. He's crazy busy, so I thought it was amazing for him to do that.

11-25-2009, 04:11 PM
That's great news, Sangye! Hearing is a precious sense I no longer take for granted, so I am happy you (finally!) got some good news on a WG-related issue.:):):):)plus500!

11-25-2009, 10:51 PM
Sangye, so glad to Hear Thaaaaaaaat! My right ear is better than the left. If I notice the hearing decreasing the alarm bells go off. I go in a panic, " Is it WG flare?" Sangye, this is very great news!!:)

11-26-2009, 12:16 AM
Congrads! That is a big one from my understanding. I am still waiting to hear from JHU. Sent everything to them but still waiting. I have always had fluid drainage issues in my ears. I know its worse when I keep saying" What was that?" or "I did't hear you can you you say thaat again?"

I have another road bump for the holiday. My mother took herself to the ER in philly after another Doc. appt. up there. Of coarse they kept her. I knew they would. Her cellulitus is back and bad. She has been on antibio. for three weeks and nothing it is IV time. They would not give her a checkout date yet because they have to see if she responds sooner than later. Anyway, I get to take the day off and rumage her house for all the comforts and bring them to her.
The fun part for me is explaining all that she has had done in the past and what they can't do for her. They fight you all the way because they think they have found something new and its not. She is very complianted. She has also been in the hospital more than she ever thought she would be so she hates them and gets the attitude quickly. Wish me luck! If you dont hear from me it is because I am in Philly with her.
Like the snuggly pic Doug!

11-26-2009, 03:23 AM
I was thrilled with my ENT's who treated me for my stenosis symtoms, but they are not WEG specialists and cower somewhat when I try to discuss Weg symtoms. Next Wed I will be seeing a ENT specialist who also specializes in Wegeners at the Mayo in Rochester, MN so I will let you all know how it goes and what he asks of me.


11-26-2009, 03:28 AM
(I hope it goes well with your Mom! I had cellulitis-- unbelievably painful)

I should clarify that I don't have ear involvement, so the good test result wasn't a result of treatment. I've just noticed decreased hearing in one ear, and a little difficulty hearing conversations with background noise. Also, cytoxan gave me tinnitus while I took it, and it's still there.

11-26-2009, 04:07 AM
Hi Sangye,
Are you sure it was the cytoxan that gave you tinnitus? There are so many people on the Forum suffering from it (including myself) that I had decided it was a Wegener's symptom. I've probably only had it for the past ten years, which goes together with my ear involvement, but no significant change in medication.

11-26-2009, 04:24 AM
I'm very sure. Every day when I took the cytoxan, I got major ringing by that evening. It got worse the longer I was on it. Many drugs are ototoxic (ie, damaging to ears). Considering how toxic cytoxan was to me both times, I'm not surprised.

11-26-2009, 07:46 AM
Onatreetop, Sorry to hear that. Hope your Mom feels better and that the cellulitis goes away. Take care of yourself.:)

11-30-2009, 11:20 PM
I am back. My mother has able to come home the night before thanksgaiving late. The doc decided to send her home with oral antibi's and hope they would work. Started cooking late. The dinner went well it was a quiet one. Moms arm is still not good she thinkings it may be moving. I noticed it when it moved a couple days before the hospital visit. The pain is the pain. It is in a bad spot forearm above the rist under the arm where you might rest it. She keeps bumping it too. I told her there was one more hospital closer by she hadnt tried yet and she laughed at me.
The kids are getting stuffy again! No more flu thank you!!

11-30-2009, 11:44 PM
Glad your Thanksgiving went well. It's never ending sickness with kids, Runny nose, cough, sniffles, stomach ache and list goes on.

We had a very quiet Thanksgivng, no guests this time. We always have someone/family over. All of our family live in Chicago, so it gets lonely down here. Family likes to visit because it is warmer down here. I hardly miss the snow.:o:D

12-01-2009, 02:13 AM
Like the snuggly pic Doug![/QUOTE]

Me too! Louie had justification that night to swat me, but didn't!