Fake Flares

[Chadwyck]

Does anybody think they're getting flares, go to the hospital only to find out you're not having any flares at all?? I did just that today. Those of you who know my history, 3 months ago I had a total hip replacement on the left side as a result of damage done to it from prednisone treating Wegener's. Today the nephrologist advised me that if I was having a real flare or multiple flares I would know it, this is nothing. I guess my question is, how do you know when to go to the doctor for something serious vs. something that's just a nuissance??

[mama2005]

If there are symptoms that are flare like I email or call the doc most the time he will tell me if I should be concerned or nothing. My doc has stated several times that he would rather have me be aware then to get worse.

[Al]

Better, Chad, to have a false alarm than to tough it out when the house is on fire. Flares can get out of control very quickly. At the same time, doctors do sometimes get into "the lad is crying "wolf" again mode, so it helps to document everything, and know your own body.

By the way, how about the hip operation?

Al

[Dirty Don]

My doc has stated several times that he would rather have me be aware then to get worse.

Ditto...just had a 'bad' week of seeming flaring, but all lethargy, no other symptoms...doc is always on call for her Weggies, she said watch it, should be just part of a cyclical thing with WG at this point as all other numbers are good. But, nice to know the doc is listening and caring.

[drz]

Spent last Friday afternoon in local ER room. Figured I was starting a flare but main concern was elevated pulse rate and high blood pressure of about 50% over my norm. I had some serious fatigue, shortness of breath, increased joint pain, increased nasal bleeding, intermittent rashes on my hips and thighs, extra mucous in throat and coughing in morning so I was sure I starting a flare or some other new problem.

I had just finished my petamadine nebulizer treatment but my pulse rate was elevated before the session so didn't think that was it. After some extensive lab work and observation they agreed something was happening in my body but had no idea what.

None of my lab work indicated any evidence of flaring. They were nice enough to do all my regular routine monthly labs that were due today and they all looked stable as they have for past three months. They told me to keep monitoring my elevated BP and pulse rate and to return if it stayed over 200 BP or I developed any new symptoms. They also advised me to take an extra pill for blood pressure when I got home.

When double checking my evening meds I realized no BP pills were in the slot of my pill box for that evening. I double checked the other slots and found same thing. I had missed 3 doses of my BP meds and my body was really showing it. They had been inadvertently omitted from my weekly pill set up due to my haste to pack quickly in order to get spouse down to Mayo Clinic for her RTX IV treatment at 6 am the next morning. I took the extra BP pill and my usual two evening pills and within two hours blood my pressure dropped down to my normal rate as did my pulse rate. All was fine again next morning. Joint pain had deceased and no blood in nasal rinse or any other symptoms of flare since then. Now I manually count off each pill before I take it to see that they are all in slot for that time.

I also learned the two meds to reduce my blood pressure really work and are necessary for me to take.

[Dirty Don]

[QUOTE=drz;54877]When double checking my evening meds I realized no BP pills were in the slot of my pill box for that eveningQUOTE]

Did exactly the same thing w/my pred dosage...ended up taking 1/5 the correct dose for 3 weeks...I survived, but paid a bit of a price in symptomatic behavior...dummie I am! Be careful!!

[pberggren1]

It is so easy to forget meds and make mix ups like this.

[NicShaf]

I agree with Mama2005, I usually email my doctor if I'm unsure, he always tells me to trust my instincts. I also swear by keeping a daily log of how I'm feeling. Then I know if it is a new symptom or I've had it for a week or two, or what ever the situation is. It's easy to forget when you have so much going on daily.

[watersedge]

Glad you got sorted out Drz and feel alright again, you must have been worried with all those symptoms coming at you at the same time. Mind yourself and don't forget to take your meds. Hope your wife is doing o.k.

[KathyB]

I think I'll invest in a pill box. Many times a week I try to remember what and when I took my meds even though I write it in my daily log! You all are quick to remind the readers we have to watch our med management or suffer the consequences!

KB

[freakyschizogirl]

I find my pill box handy. Especially cos i sleep in at work and occasionally at the boyfriends, its handy to just carry my meds in my bag.

It is still easy to mix up or miss doses with a pill box so be careful.

[drz]

I find my pill box handy. Especially cos i sleep in at work and occasionally at the boyfriends, its handy to just carry my meds in my bag.

It is still easy to mix up or miss doses with a pill box so be careful.

It helps to either post some reminder some place you should see frequently like on refrigerator, bathroom door etc to take pills at certain times. I try keep my pill box on kitchen table or counter by phone so I see it often. It helps but doesn't remind you at certain time and you still need to set up each compartment correctly to get correct meds as prescribed. I could never get by without one and set up my meds for each week. That way I can include pills I only take once a week like Fosomax.

[gunnyl]

If you have a smart phone or a tablet there are apps to manage your medications and dosages. When I take more than a few different types of meds I program it into my tablet and it keeps me on track....

GL

[Pete]

I use two pillboxes to organize my meds. I stock one with the meds I need to take early in the day, and take all of those with breakfast. The other is stocked with meds I take with my evening meal. I also have programmed mt iPhone to remind me to use my pulmicort inhaler in the morning and evening. The only time I have trouble remembering to take my meds is when we go out to dinner.

[drz]

Better, Chad, to have a false alarm than to tough it out when the house is on fire. Flares can get out of control very quickly. At the same time, doctors do sometimes get into "the lad is crying "wolf" again mode, so it helps to document everything, and know your own body.

By the way, how about the hip operation?

Al

I love Al's wisdom here and miss his contributions. If we had a collection of all his posts and messages to us it could be edited into a pretty good small book.

[annekat]

Better, Chad, to have a false alarm than to tough it out when the house is on fire. Flares can get out of control very quickly. At the same time, doctors do sometimes get into "the lad is crying "wolf" again mode, so it helps to document everything, and know your own body.

By the way, how about the hip operation?

Al Oh, gosh, I miss Al, too! I, too, am curious how you are doing after the hip replacement. And I'm curious how long you were on pred and how much, in order for that to happen! That is a bit worrisome, since we all have hips.

[alexciasmom]

Got to have a pill box. Water Prof is good as well.

[Sangye]

I set my alarm on my cellphone to remind me to take my 2:00 pm dose of hydrocortisone. I'd never remember otherwise. All my other meds are taken morning and night, so I use a pillbox with daily containers that pop-out and have an area for am and pm

[Chadwyck]

Looks like Wegener's has me right where it wants me. I have my followup appointment in 2 more days. Last night I was talking to my friend on Skype and apparently, I was passing out while talking to him. He first thought I was very tired and started to laugh. But when I started breaking out into a major sweat, the smile was immediately off his face. He almost was about to call 911 for me thinking I was getting a severe flare. When I woke up this morning, that's when he told me what he saw on my webcam during the Skype conversation. I said, "WELCOME TO CHADWYCK'S WORLD OF WEGENER'S VASCULITIS!!!" He's heard me talk about it over and over but to actually see it in action... he was scared *@$@% out of his mind!

[annekat]

Looks like Wegener's has me right where it wants me. I have my followup appointment in 2 more days. Last night I was talking to my friend on Skype and apparently, I was passing out while talking to him. He first thought I was very tired and started to laugh. But when I started breaking out into a major sweat, the smile was immediately off his face. He almost was about to call 911 for me thinking I was getting a severe flare. When I woke up this morning, that's when he told me what he saw on my webcam during the Skype conversation. I said, "WELCOME TO CHADWYCK'S WORLD OF WEGENER'S VASCULITIS!!!" He's heard me talk about it over and over but to actually see it in action... he was scared *@$@% out of his mind! Wow, I don't like that you went through that, or that you might on a regular basis, but I do like that someone who doesn't have Wegs learned something about it first hand!

[elephant]

Pill boxes are great! Also documented what I took too, just to double check that I don't take extra.

[drz]

Pill boxes are great! Also documented what I took too, just to double check that I don't take extra.

Some times though I forget to use the box or make a mistake and take the wrong day or time of day and then wonder and worry what meds did i take or not take. Generally though it works well to take out the compartment for each day and set it on the dining table and I usually get the right meds that way. When I can't do that consistently I will have to hire the nurse to come over and do my meds each day. Some of the other residents have to do that.