help

[delorisdoe]

I am not sure how much longer I can stand this. My pains are getting worse day by day it seems. It is so much like when I was first diagnosed. The only difference is this time I know what it is. I always thought that it would be easier because I know what is causing the pain but I never thought about how if pain is my most pressing symptom than treatment is not an option for me. This is so depressing and really dragging on. sorry i know i promised not to whine anymore.

[Red]

I am sorry for your pain i did things that i can only say on private message.

[delorisdoe]

i accept any and all private messages.

[Al]

I am not sure how much longer I can stand this. My pains are getting worse day by day it seems. It is so much like when I was first diagnosed. The only difference is this time I know what it is. I always thought that it would be easier because I know what is causing the pain but I never thought about how if pain is my most pressing symptom than treatment is not an option for me. This is so depressing and really dragging on. sorry i know i promised not to whine anymore.

Leigh, I'm going to leave this comment up for everyone, because, though the observation is personal, your story might be something of a teaching moment for others.

I don't care a whit about your alleged "whining", pain is pain and, yes, it hurts, and sometimes you just have to moan and grunt and sniffle and shout. This is a form of therapy. But other medially accepted forms of treatment you have been outspoken about shunning, running--not walking--away from. Not so good, my friend. And rather counterproductive when a little discomfort can, in fact, improve the pain situation a lot. Yes, everything is a risk, but the potential benefits are there for the taking. I truly hope you can bring yourself to go along that road, if for no other reason than the scenery will be a pleasant change. You don't owe it to me, of course, but I think you do to your family--and, most of all, yourself.

Al

[delorisdoe]

I am not sure what you mean "outspoken about shunning". If you are refering to cytoxan I was on 150mg of oral cytoxan for 2.5 years and cannot go on that. No other options have been offered to me as it worked and until recently i have not needed much more than pred once and a while. Ok I did mention i run away from ent's but i have next to no sinus involvement so that is ok. I have an appt dec 15th I just have to figure out how to make him understand that i need something for the pain. I think 8-16 tylenol/advil is not ok.

They shoot horses dont they?

[maria garcia]

Leigh are you on medication? Maybe flaring? Please don't worry about shouting here, thats what we are all here for. Its hard for anyone else to understand. My heart is hurting and my nervous are out of control, my daughter now started with ear pain today, another Wegs symptom. I just want to cry. But I need to be strong for her. So Im virtualing screaming and crying .

[delorisdoe]

I am not on meddication right now. My doctors are waiting for me to need it for something other than pain but i think i cant wait for that any longer. Al is right it does affect my family , my job and myself. Maria I think it is maybe harder on mothers. I know my mother has a hard time dealing with mine and my brothers AI diseases-i hope your daughter lets you help her more than i let my mother help me. I am a bad patient I am afraid.

[Al]

They shoot horses dont they?

Not so often, Leigh. The first choice is repair. A fixed-up horse may never race again, but there are other fine equine activities. (Personally, I'm neither a runner nor a stud, but I hope to offer something useful for a while yet....)

Pred "once and a while" seems, to me, a goofy concept. The whole point of pred is to be a regular deal so long as you need it. Some types of pain reduction are less stressful than other kinds. I can't take any NSAIDs, for instance. Fortunately, I am relatively free of physical pain. (The psychic pain is another story.) Can you, in fact, last nearly another month for something? I said sometimes you have to moan, etc., not all the time!

Al

[drz]

Today most doctors and clinic accept pain is a real problem that requires some active treatment. It is not something that needs to be tolerated. Every time I go into a clinic they ask me if i have any pain and to rate it from zero to ten. Maybe you need to scream more at your doctors or shop or shop for some more responsive ones. You deserve some treatment to give you pain relief. Today pain is generally considered unnecessary on any long term basis and is usually aggressively treated when present.

[delorisdoe]

when i was first sick i had a really rough go of the joint pain. it was unbareable acctually. one of my employees at the time looked at me one day with a really sympathetic look and said "they shoot horses dont they?" I actually cry when I remember that. I had been in sooo much pain for sooo long and in one quick sentence he let me know that he could see what i was going through and that he felt bad. i am not good with sympathy and he rarely spoke unless spoken to so it has stayed in my mind for all of these years. I can go see my family doc if needed. im stubborn. I also wake up every morning and convince myself that today will be different.

[maria garcia]

Leigh if your in so much pain then Wegs must be flaring and you probably need meds. I would not wait to your appointment. My daughter is dealing fine its me! Then again Im the one reading all about it and Im not sure if she knows how bad it can get.

[delorisdoe]

Today most doctors and clinic accept pain is a real problem that requires some active treatment. It is not something that needs to be tolerated. Every time I go into a clinic they ask me if i have any pain and to rate it from zero to ten. Maybe you need to scream more at your doctors or shop or shop for some more responsive ones. You deserve some treatment to give you pain relief. Today pain is generally considered unnecessary on any long term basis and is usually aggressively treated when present.

I will maybe muster the courage to insist at my next appointment

[delorisdoe]

Pred "once and a while" seems, to me, a goofy concept. The whole point of pred is to be a regular deal so long as you need it. Some types of pain reduction are less stressful than other kinds.
Al

The pred has never been for pain. Over the years i have lung involvment off and on and a few weeks of pred seems to chase it away. I am very aware of my lungs and I run to the specialist when they are flaring. My problem is that normaly this kind of joint pain is closely followed by wegs in my lungs...

[Al]

...im stubborn. I also wake up every morning and convince myself that today will be different.

You are surely right on both counts, Leigh--perhaps on all three! As for sympathy, I think you are normal. It is as hard to receive sympathy as it is to provide anything meaningful along those lines. So I give you none. Rather, pardner, I merely offer to be your riding buddy for a while along the trail (we were talking about horses, yes?). When the saddle gets sore, you make adjustments. Stoicism is fine for short term pub talk, but as a long-term philosophy of pain management, I think a cynical hedonism is more effective!

Al

[Trudy]

The pred has never been for pain. Over the years i have lung involvment off and on and a few weeks of pred seems to chase it away. I am very aware of my lungs and I run to the specialist when they are flaring. My problem is that normaly this kind of joint pain is closely followed by wegs in my lungs...

Leigh, What joints and what type of pain are you having? (I hope you didn't already say and I missed it). Pain needs to be controlled as it is stressful, and stress causes your body to flare. If you can get the help with the pain, which might be some pred plus something, you might save yourself another flare of your lungs. I have to take Tramadol. I thought it was useless...till I stopped it. Then is when I found it really was helping, not eliminating but really taking a good edge off of my pain. Please don't wait and insist on something to control it.

Trudy

[Al]

My daughter is dealing fine its me! Then again Im the one reading all about it and Im not sure if she knows how bad it can get.

(That could be a blessing for your daughter, Maria. And, of course, it may never be as bad for her as it can get!)

[drz]

I will maybe muster the courage to insist at my next appointment

Where is Sangye when we need her to nag you? If you are having symptoms suggestive of a flare you need medical care sooner, not later. You can end up losing your kidneys, or bleeding so bad in you lungs that....or some other complication. Please go get help now, not later!

[maria garcia]

Im just hoping the 15 mg on MTX and 10mg of pred. will be enough. I can't belive that after four days of pred. this new symptom pops up. I wish I had a 24 hour scan to know what going on inside of her. Next blood work is in a month and as much anxiety I get on that date and feel like im getting a heart attack ( stress related chest pains). At least I know what happening inside. She is also having a cat scan next friday and im so worried. Why the ear pain now. Im already on antideppresant I don't know what else to take. thank god for my 4 year old who brings a smile to my face with her silly stuff. Al i need you here to hold my hand. My husband is so layed back and doesn't seem to be putting the puzzle together.

[Al]

(Maria, I'll send you a PM.)

[Sangye]

Where is Sangye when we need her to nag you? If you are having symptoms suggestive of a flare you need medical care sooner, not later. You can end up losing your kidneys, or bleeding so bad in you lungs that....or some other complication. Please go get help now, not later!
LOL I already nagged her. You thought I wasn't paying attention, huh? :wink1:

[maria garcia]

Sangye your great <3

[delorisdoe]

Between my appts I have blood work done every 3-4 weeks I do a 24 hour urine test. If anything shows up I am called in.

[Chris G]

I'm jumping in to nag too. I've held my tongue and respected your fear of the drugs, and your desire not to be pitied. But, maybe I misunderstood regarding the decision for medication - I thought that you were holding out a long as possible. But here you said that your docs are the ones who don't want to treat for "just pain". If that's the case, I think they've made a bad decision. I know that you prefer not to speak up, but if the pain is this bad, and not improving, it's time that you did. Get in there, and tell them how bad it is! Let them know how well informed you are this time around..........and ask lots of questions. Take part in your care - don't let them dictate it. I know it's hard for you, but SPEAK UP!!! You can do it!! If you need help, put me on the speaker phone! You know I mean it too.

I also know that you fear ctx, with good cause. They'd never put you on it again - if they suggest it, fire them immediately. There are many options available, that will not do to you what ctx did. Although I complained about mtx, and others may have trouble with imuran and cellcept, one of those could prove to be exactly what you need. They are much milder than ctx, and could send your pains away with few side effects! :thumbsup: And then there's always rtx if those don't work well.

I also know how you hate pred. It's possible that you could use one of those maintenance drugs without pred. But not treating for "just pain" is going to send you into a very dark place. I think it finally sounds like you've had enough........am I right?

Now, get on the phone before I have to drive up there and drag you to the doctor!

[delorisdoe]

It is a joint-lol-descision between my doc and myself. When joint pain is the only symptom I down play it for fear of the drugs but in the past when I have resisted treatment my doctor tells me "suck it up what do you think your choices are". He knows I clam up so this is why he tests my blood and my urine-24 hour collections-often. Last night was bad. I think I over did it this week and when i decided to bathe away the pain I did not think ahead to how I would get out of the tub as my left knee ankles and hand were really bad. It was awful. It is the tub incident that made me finaly decide that maybe I need to let the doctor know just how bad it is...of course I am already blaming it on my hard week at work and have decided to see how i feel after my days off. I am sorry that I am probably making some of you feel like you are beating a dead horse by constantly telling me the same thing and me not listening. This is not true. This site has helped me for the first time in ten years actualy face this disease. I have managed to tell a few people about what I have-this is HUGE for me. A lot of you here know a side of me that people I have known for years do not know. I will contact my doctor next week if I am the same.

Again thank all of you and I am sorry for seeming like I ask but dont listen. I do. I have come along way since I first came here.

[Sangye]

(That was a great post, Chris!)

Take care of yourself, Leigh. Denial and/or waiting for the doctors to take the lead has cost too many people their lives in this group.

[pberggren1]

You need a big hug too Leigh. If I was close I would give you a long hug. You are family, just like everyone else on here. We all care for one another.

[Dryhill]

I will contact my doctor next week if I am the same.

You should see your doctor next week howevere you feel. If you do not tell him how bad things get how can he treat you properly? I know I am a whimp but if I am in pain I seek help, there is virtualy no reason to suffer pain these days.

I am sorry to be another one nagging you Leigh, but like others I am concerned about you.

[delorisdoe]

I think I am confused because for the first 1.5 years pre diagnosis i suffered in pain with no treatment. I guess it made me believe that pain does not require help. I dont know.

[Chris G]

You need a big hug too Leigh. If I was close I would give you a long hug. You are family, just like everyone else on here. We all care for one another.

Yes Phil! Thanks for saying it! I forgot to offer a hug!!

Here's my hug!
:hug1:

Don't mistake it for my resignation to stay off your butt though!! Call the doc on Monday regardless of how you feel over the weekend.

P.S. I don't feel like I've been beating a dead horse. I trusted that you'd know when you'd had enough. Now let's DO something about it!

[Chris G]

I think I am confused because for the first 1.5 years pre diagnosis i suffered in pain with no treatment. I guess it made me believe that pain does not require help. I dont know.

I think you know that the pain is your prelude to worse things - sorry if that sounded gloomy. We (I) don't want you to let it go until you end up in the hospital again.

[Sangye]

I think you know that the pain is your prelude to worse things - sorry if that sounded gloomy. We (I) don't want you to let it go until you end up in the hospital again.
That's exactly right. One thing is for certain with Wegs-- if you ignore symptoms long enough you will have a big mess on your hands, requiring the highest doses of the worst drugs.

[delorisdoe]

I was in the hospital for diverticulitis. Totally not related. Ok well i guess the fact that i had a very deadly blood infection that i should have at least wondered about seeing as i had quite the fever but i still went to work that morning and then asked to go home early because my tummy hurt but offered to stay until noon...point taken. lmao

[Chris G]

Ok maybe my memory sucks....but I thought you were hospitalized with lung issues the first time around....... No?

[delorisdoe]

nope...no hospital. It was my lungs but i was not in the hospital-and child birth.

[Chris G]

That's exactly right. One thing is for certain with Wegs-- if you ignore symptoms long enough you will have a big mess on your hands, requiring the highest doses of the worst drugs.

Yeah and I know you don't want high doses of anything! So let's put a stop to the wg progression now! Don't ya love how this has become a team effort?!?! :flapper:

[Al]

Yeah and I know you don't want high doses of anything! So let's put a stop to the wg progression now! Don't ya love how this has become a team effort?!?! :flapper:

(So, Chris has the hot hand tonight. We'll give her the ball more often!)

Chris and Sangye are spot-on, Leigh. Do not let this thing get out of control! It will be definitely worse by putzing around. Go, girl, and don't bother to land on Boardwalk.

Al

[drz]

Leigh

Have you seen a doctor yet since we started nagging you?
We aren't trying to beat a dead horse but would just like a progress report on what help is coming for you.

[maria garcia]

Sometimes we just need to vent. Especially when pain is involved physically and mentally. Im sure leigh will do the right thing. Leigh know we all care and you can vent all you want. Im sure we all have vented either in the forum, alone, with our family. I usually vent here or when Im taking a shower and nobody can here me sometimes late at night when my family is sleeping.

[Al]

Sometimes we just need to vent. Especially when pain is involved physically and mentally. Im sure leigh will do the right thing. Leigh know we all care and you can vent all you want. Im sure we all have vented either in the forum, alone, with our family. I usually vent here or when Im taking a shower and nobody can here me sometimes late at night when my family is sleeping.

Well said, Maria! Venting is useful. And dealing with the pain is also useful. And Leigh is useful; it is our job to help her remain so!

Al

[jola57]

Deloris, you do not want to wait, flares do not go away they get worse, so keeping your head in the sand will not make it go away. So here I go, nag,nag, nag:hug2:

[delorisdoe]

I will call tomorow. Thank all of you.

[elephant]

Leigh, glad you calling tomorrow. Lets us know how it goes!

[drz]

I will call tomorow. Thank all of you.


Yip Hip Hooray!!! :hug3:Our nagging worked (maybe):unsure:

[delorisdoe]

Yip Hip Hooray!!! :hug3:Our nagging worked (maybe):unsure:

I must be thinking out loud. I have done nothing but take advil and lie around all day so my pain is less.

[Al]

Lol, I hate to say it but as of right now my pain is not so bad...

That won't get us off your back, Leigh. Consider your backside kicked. All the way to the clinic.

Al

[Chris G]

I must be thinking out loud. I have done nothing but take advil and lie around all day so my pain is less.

.........and yet, you still called the doctor, right? When is your appointment? I'll clear my calendar so you can put me on speaker phone.

[delorisdoe]

I called and left a message.

[Sangye]

That won't get us off your back, Leigh. Consider your backside kicked. All the way to the clinic.

Al
LOL It might take a bunch of us because we tire easily.

[drz]

LOL It might take a bunch of us because we tire easily.

Maybe we can take hour shifts with tag team backup?

[Palmyra]

Here is another one of the group, kicking your backside all the way to the clinic.... did you make the call? My calendar is wide open to help with that appointment :sneaky: (I have much experience...my daughter won't even join the forum...she lets me do all the dirty work!)

[Al]

Here is another one of the group, kicking your backside all the way to the clinic.... did you make the call? My calendar is wide open to help with that appointment (I have much experience...my daughter won't even join the forum...she lets me do all the dirty work!)

Whatever it takes (up the our physical limits)--you may be screaming in the clinic parking lot, but this rag-tag-tag-team will with boots kicking, Leigh!

Al

[delorisdoe]

My doctors office called me back on clinic day. I have a requisition for blood work, and for an chest xray.

[Sangye]

That's great, Leigh. Good luck!

[drz]

My doctors office called me back on clinic day. I have a requisition for blood work, and for an chest xray.

Great to hear. Now we will wait for the results.

[delorisdoe]

I had my appt today and all they did was give me a prescription for meloxicam??? The resident who wrote it made a mess of it and i could not get it properly filled. She had me taking it 4 times a day instead of once. The pharmacy can't fill it because she did not include her physician's #. I think she had her pet chicken sign it. Maybe this is a sign I should not take it. I'm going to bed.

[pberggren1]

I had my appt today and all they did was give me a prescription for meloxicam??? The resident who wrote it made a mess of it and i could not get it properly filled. She had me taking it 4 times a day instead of once. The pharmacy can't fill it because she did not include her physician's #. I think she had her pet chicken sign it. Maybe this is a sign I should not take it. I'm going to bed.

Did u not see ur Wegs doc today? What is meloxicam?

[delorisdoe]

yes I did, that is what he gave me and I do not know what it is. I always see his resident and him.

[pberggren1]

yes I did, that is what he gave me and I do not know what it is. I always see his resident and him.

Why didn't u ask him? What is it prescribed for? What else happened at the appointment? You sound depressed.

[delorisdoe]

I do believe it is a Nsaid and I am sure it is for pain.

[Trudy]

I do believe it is a Nsaid and I am sure it is for pain.

It's generic of Mobic, and just what you said above. Hope you can take it soon and it works for you!

[mishb]

I was prescribed meloxicam prior to WG diagnosis.

It is an anti inflammatory and was given to me for my RA.
It didn't work though, didn't even touch the sides. I hope it works for you.

The pain never became bearable until I started on the pred

[delorisdoe]

It was hard for me to articulate the pain as it comes and goes with no rhyme or reason and for the last two weeks it has been gone. I was trying to explain how bad it gets but out of site out of mind. I hope it works too. I had tests for ra and other such problems and none came up so I think it is all wegeners related.