Everything in excess -- giving up....

[vdub]

I am so overwhelmed with blood tests, doc appts, and drugs that I am simply giving up. At least for a while. I'm now on about 18 drugs/day, but it varies up and down. A month ago I was on 23.

For 4 years I have been changing drugs in an attempt to get rid of the pain. One of the drugs I'm on is tramadol (8/day), which is a light-weight pain pill. I was on 8/day hydrocodone to manage the joint and muscle pain, but the side-effects were no fun at all.

Anyway, the docs have been trying very hard to adjust a whole miriad of things to get to the bottom of what is causing the pain. I've been up and down on mtx, pred, hydrocortisone, levothyroxine, you name it, it's been adjusted. But, as you guys know, many of these drugs take a month or more to start taking effect, so it's difficult to tell what is really happening. I must say, though, that I do feel great when I'm on a bunch of pred.

I have great docs and commend them for a valiant attempt, but I decided a week ago to take a break from things. I'll have some pain, but I can deal with it -- at least, with the pain pills, I can deal with it. So, I"m giving up for a while.... Just so tired of it all. I'm not quitting the meds (obviously), just quitting the changes. So far, so good. Yes, I have pain, but it's not excruciating. It will limit my activities somewhat, but that's kind of the nature of this disease.

[pberggren1]

I can certainly understand why you choose this. I don't think it is a risk really what you are doing. I know you know your diseases and body very well and will go back to your docs if you feel things are getting worse. I wish you the best vdub. Please keep us updated on your progress.

[mishb]

I was certainly dreading reading what you were going to say vdub :crying: however, I'm glad I read it and I'm equally glad that it wasn't what I expected.

If you are able to deal with the pain, then I think some time without those horrible meds would be good for you.........as long as you continue taking the ones that are keeping you here with us :thumbsup:

My fingers are crossed that the pain does not get too bad for you

[vdub]

I shouldn't be complaining so much -- it's very unbecoming. Many people have it worse than me. Sometimes I just get to the point of "uuughh", more pills....

[pberggren1]

You can vent and complain, but I know what you mean. No one likes to a complainer. And you are right, it is unbecoming but it is our human nature. The spirit is willing but the flesh is weak. At the end of the day we all have so much to be thankful for.

[windchime]

This is the right place to express yourself, don't ever apologize for that. It is what it is. This disease can take a toll over time and you are entitled to feel fed up. Taking a "vacation" from changing drugs is a good idea. Maybe something will have time to kick in. In any event I think you know when it's time to have a chat with the doc if you're getting worse. Hang in there and know we are here for you. Hugs to you. :hug1:

[Debbie C]

Vdub, don't ever apolagize for venting on here,that's what we are here for. Lord Knows I do it enough! I am sorry you have so much pain and my gosh "THE PILLS" I don't blame you for wanting to cut back on them,maybe less is better since each one has its own side effects,your body is getting so overwhelmed with that. I hope you can find 1 med. that will help. Take care and keep us updated on the outcome

[annekat]

vdub, it may be true that some people have it worse than you, but by the same token, some of us, like me, have it better than you do. I only take 3 meds, MTX, pred, and Bactrim, and while I've had a little joint pain here and there, I have experienced nothing like what you are describing, and no pain killers have ever been needed. So I think you have the right to complain once in awhile; you do it very seldom. I'm glad you are taking matters into your own hands and giving yourself a break from the exhaustive routine that never seems to work all the way. Whatever you mean by "giving up", go for it, do it your way, get some rest, and avoid any stress, if possible. You can always change your plan and/or see a doc if things become unmanageable. It's good that you posted about this because it is another dimension of having Wegs that I, for one, was unfamiliar with, and we all need to learn as much as we can about this disease and what our fellow sufferers go through. Best to you.

[vdub]

So far, so good... I'm feeling pretty decent. I've been on stable drugs for about 10 days now. I ache quite a bit when I first get up in the mornings, but that goes away a couple hours after taking my pills. :-)

[renidrag]

Since remission and WG drug free, I had hoped to also be pain free but that is not the reality of my new normal. Not excruciating just there, every day,there. Some times I can put it in the back of my mind but not always. Then of course I have the Tinnitis (sp) at all times. Some times I wonder how I can fall asleep with all the noise in my head. Any way, didn't mean to go on so, just to say I know you will be ok, it is maybe your second new normal. Good to hear from you and best of luck. As an aside, I can't help but think we could all put up an new avatar like Anne's. Would be kinda fun to look at our healthy selves in younger days. Thanks Anne.
Dale

[windchime]

Since remission and WG drug free, I had hoped to also be pain free but that is not the reality of my new normal. Not excruciating just there, every day,there. Some times I can put it in the back of my mind but not always. Then of course I have the Tinnitis (sp) at all times. Some times I wonder how I can fall asleep with all the noise in my head. Any way, didn't mean to go on so, just to say I know you will be ok, it is maybe your second new normal. Good to hear from you and best of luck. As an aside, I can't help but think we could all put up an new avatar like Anne's. Would be kinda fun to look at our healthy selves in younger days. Thanks Anne.
Dale

Dale, I have tinnitus also. Most of time I can ignore it, but others it drives me wacky. I use a fan at night when I sleep and that white noise helps a lot.

[Debbie C]

vdub, I just listened to that webinar and they didn't really have a whole lot of new info that we all don't already now but he did mention about arthritis that a soft massage ( not a deep one ) and acupuncture can help relieve pain. I didn't know if you ever tried that ?

[Alysia]

Hi vdub,
I am sorry for you :sad: pain is not easy to bear.
I think that you are right, that stopping the fight to change it, may help and make things easier. at least you don't have to suffer the anticipation and frustration, and going to appt. with docs etc.
rest and peace of mind are also kinds of meds.
does your new avatar have a story ? does it mean that your daughter is home ?
lots of hugs to you. I hope the pain will go away.

[marta]

I'm so picking up what you're putting down vdub. I'm also feeling the same but it has to do with being in doctor's offices, or labs or hospitals. I am supposed to be going for regular blood tests but I just said to heck with it. I don't remember when I had my last labs.

Funny that whole pred love-hate thing. It really is the best for the pain and I think that's a tell tale sign that the pain is inflammation related. If the pred helps your pain, then you're having inflammatory issues... or that's how I understand it. I could be wrong.... it's happened before. :wink1:

As for tweaking the 'cocktail', I'm with you on that one 100%. My doc refused to do anything with more than one drug at a time and giving it enough time so that we see how changing that 'one drug variable' changes the whole picture. She doesn't want to mess around and tweak with more because then you don't know what it is that's causing the positive or negative changes in status quo. That makes a ton of sense to me from a scientific perspective. So you do what you're doing and then when you decide to tweak, do it one at a time.

Take care buddy and I hope your pain goes away. I hate pain, and I'm pretty sure you do too.

[annekat]

As an aside, I can't help but think we could all put up an new avatar like Anne's. Would be kinda fun to look at our healthy selves in younger days. Thanks Anne.
Dale You're welcome, Dale. And that's a pretty good idea. I was only 7 in that pic and might be able to come up with one when I was an adult and didn't have Wegs.

[Alysia]

I am supposed to be going for regular blood tests but I just said to heck with it. I don't remember when I had my last labs.
.

oh, marta, I can't believe that. you ? :rolleyes1:

[marta]

You're welcome, Dale. And that's a pretty good idea. I was only 7 in that pic and might be able to come up with one when I was an adult and didn't have Wegs.

I like that idea too... I think we all see ourselves as the healthy version that we were before Wegs. so it'd be nice for others to see us as we see ourselves on the inside.

[annekat]

oh, marta, I can't believe that. you ? :rolleyes1: I can relate to Marta's doing this. If she feels pretty good most of the time, is out skiing and living a full life, and is tuned in enough to her body to know if something starts to turn in a negative direction, at which point I'm sure she'd go in for bloods. My doc has never had me do bloods as often as some here, which has bothered me a little, but on the other hand, my bloods are always OK. The one time I was flaring, I knew it, and bloods were done which proved I was. Not saying people shouldn't get bloods regularly whether they are flaring or not, just saying some of us know our bodies really well and can make our own judgements.

[renidrag]

Perhaps I will try the fan, maybe it will make my snoring background noise for Deb. Here's the old (young) me.
Dale

[Alysia]

awww Dale, you are very cute :biggrin1:

[annekat]

Perhaps I will try the fan, maybe it will make my snoring background noise for Deb. Here's the old (young) me.
Dale Oh, Dale, that is such a great pic of the little boy you! Thanks for sharing!

[Alysia]

. My doc has never had me do bloods as often as some here, which has bothered me a little, but on the other hand, my bloods are always OK.
I must do my labs not less then once a month. sometimes every 3 weeks :sad:

[renidrag]

I was getting bloods done monthly, when the doc said three months it made me nervous, now it is six months and I agree that we are more tuned into our bodies than most. If I feel anything is wrong I would call and get it done. The part I had to tackle was the fact that not everything that goes on is WG related. Even the hangnail on my little finger.
Dale

[drz]

I was getting bloods done monthly, when the doc said three months it made me nervous, now it is six months and I agree that we are more tuned into our bodies than most. If I feel anything is wrong I would call and get it done. The part I had to tackle was the fact that not everything that goes on is WG related. Even the hangnail on my little finger.
Dale

Last year I asked my Weg consultant at Mayo about cutting back from monthly labs to every six weeks. He discouraged it since he said I could get a silent kidney flare and lose my kidneys before I knew anything was wrong. He did also put me on a weekly dipstick test to check urine for blood which would be a sign of Wegs in kidneys. I have gone six weeks already a couple of times when illness or other things got in the way of doing my lab work or like now I see no point in getting labs done at home this week and then have them repeated in two weeks when i see my Weg doctor. When I noticed an increase in my residual symptoms or some new symptom going on, I get them done sooner than monthly. I think this is what we should do to monitor our own health but some times it is hard to know what is happening in our bodies.

[Lilly]

I know exactly how u feel....you just get so tired of all the pills, meds, blood draws, dr appts, etc. I've gone off my pain meds before too! But then you feel guilty when u vent! You feel like "some others have it so much worse, why am I complaining?". But you do have to remember that we are fighting a mean dz, it can turn and change......it's unpredictable, and we just have to get mad at it sometimes, because we have to stay strong so much of the time....because "we don't look sick," so people don't get it. I wish u the best of luck with your meds....keep us posted :) And u can vent to me anytime.

[Lilly]

I have a pic of before I got wegeners. As a matter of fact, it was appx 4-5 yrs before. I'll make it my aviator 😊

[vdub]

Does your new avatar have a story ? does it mean that your daughter is home ?
Ah, Alysia.... you are so perceptive! Yes, I changed the avatar at 0300, on the 24th. That's when she stepped foot on US soil. She's at her duty station now, but will be home this weekend. Her brother is also coming home and we will have Christmas on the 4th. We've put up the outside lights, will get a tree and everything. It's going to be just like any other Christmas only 6 weeks late.

[Alysia]

Ah, Alysia.... you are so perceptive! Yes, I changed the avatar at 0300, on the 24th. That's when she stepped foot on US soil. She's at her duty station now, but will be home this weekend. Her brother is also coming home and we will have Christmas on the 4th. We've put up the outside lights, will get a tree and everything. It's going to be just like any other Christmas only 6 weeks late.

WOW. Great. her coming home will make you more healthy and pain-free then anything else !

[vdub]

WOW. Great. her coming home will make you more healthy and pain-free then anything else!
I think you are right. It has already had a positive effect. Afghanistan is not a nice place to send our sons and daughters, but I'm proud she did her duty.

[renidrag]

Thanks to your daughter. And have the best Christmas ever.
Dale

[Dirty Don]

Pulmy has dropped me to 3 appts/year now...and today I meet w/rheumy, so there may be a change there too...who knows...it's a crapshoot at best! Sighs, reaches for coffee, spills on lap...sheesh...more drugs to apply! Ha!

[Debbie C]

Vdub,that is great to hear about your kids coming home. I hope you have the best Christmas ever. I too think this will take alot of stress and worry off of you and hopefully will make you feel better.

Take Care and MERRY CHRISTMAS !!!!!!!:biggrin1:

[annekat]

Thanks to your daughter for her service, and I hope she is home for good!

[windchime]

Enjoy your Christmas and family time. Best to all of you and I thank your daughter for her service.

[KimH]

So happy to hear that your daughter is home and safe! My son came back from his third tour in September. The stress of the worry was awful! I hope the sigh of relief helps you feel better. Also,my daughter who has been very sick for eighteen years has often worked with her doc's to get off all meds,except the life saving meds. After while it becomes difficult to assess what is causing what and the dr adds more pills and you end up with some kind of toxic soup swishing through your body. Be well and MERRY CHRISTMAS!

[skipper]

I understand the feeling. I seem to be glued to my med drawer and my life evolves around it. However, I know this is what keeps me alive. I also remember what it was like when Weggies was at its height and I was too sick to even complain. Perhaps a short break is okay. I usually talk myself back into the constant tests and meds. My question for anyone is - I have been on cellcept for two years and aranesp injections but still have very low haemoglobin. So low that I am at intervenus level. All my lab tests looked worse this time. The doctor reduced Cellcept a few months ago and Weggies came out of remission. I saw my lab results at family doctor's office but don't see specialist for a week. I think he will change the Cellcept as specialist at Mt. Sinai said it couldn't continue this way. Any ideas?