Pity, party of one?

[whatthewhat]

I just wanted to say I think this disease sucks rotten eggs. No big crisis here at the moment, just tired and tired of watching someone I love deal with all this crapola. Excuse the vulgarity.

[txrepub4God]

Yep, WG is crapola AND tiring. I just hang my hat on the fact that going through all this Weggie crud on Earth will make me very much extremely appreciate the gloriousness of Heaven for eternity! ��

[Birdie]

I just wanted to say I think this disease sucks rotten eggs. No big crisis here at the moment, just tired and tired of watching someone I love deal with all this crapola. Excuse the vulgarity.

With or without vulgarity, I thought random complaining about Wegeners was the first half of this forum's function, am I wrong?

[Pete]

With or without vulgarity, I thought random complaining about Wegeners was the first half of this forum's function, am I wrong?

Nope!! Some of us are more eloquent in our venting, but we're all in the same boat!

[Jaha]

It is the disease that keeps on giving! Mr. or Ms. Unpredictable!

[mishb]

Sucks big time, but more so when a child or young adult is involved :crying:

I hope things start to look up, WTW

[woz]

We have all been through it, and will go through it many times more, stay strong, it will get better, such is the nature of the Wegs beast.
Life is like a box of chocolates, you never know what you will get............

I like chocolates, but they don't like me.......

Regards Woz.

[annekat]

Agree with all the above. And eloquence in venting is not required! Yours was actually somewhat mild compared to the language you could have used.

[MikeG-2012]

Yea, this disease really does make you want to scream sometimes. Like today for me. Woke up in a funk--can't really explain it, and felt a little nauseous too. So called in sick, and went back to bed. Woke up again around 11:00, threw up by 12:00 noon, went back to bed, and got out from under the covers at 4:30 to go to my haircut. No idea what the nausea was about. Nothing weird in my diet the last few days; just odd.

I feel OK right now, that's the problem with this disease, it's so unpredictable, an can, and WILL, disrupt your life at any moment.

So, as wegs troopers, we trudge on as best as we can...

[Tom]

Crapola! ? I have been known to have a very vulgar vocabulary. Crapola being among the least of that vocab!
Ya let it go and tell it like it is, you know, if it feels good ,say it!
I get frustrated at times and the word that comes to mind starts with "F" and the word is not fun!
This stuff is starting to affect my diabetes and the Dr keeps changing up my insulin and wants me to email my BS's daily!
Its not enough that my lungs are gone and the kidneys are on notice that things could go south, I take a total of 26 meds per day
I wake up in a funk,(no that's not the "F" word I was thinking of but it is what it is! Like MikeG I also want to curl up in bed or my recliner and sleep!
So go ahead and say this disease makes you feel like ****, because it does for me anyway!
Anyhow, I understand how your feeling and really words can't describe the aggravation!When this all started, I was told by my RA that we had a serious problem. That was that if he didn't treat me ,I would surely die! The other side of that was that if he did treat me, he might kill me because of my past medical history involving caner meds and chemo and reminded me that if he treated me for RA the year before when I had a visit with him for suspicion of rheumatoid arthritis but he symptoms had disappeared until a year later when I flared and it became obvious! My words to him was Cool! Lets deal with it! I didn't have then nor do I have now any fear of death when my time comes and I would not hold it against him if the chosen plan did not work! There were several specialist in the field that made a plan for me to get it into remission!
I now have taken cool out of the lets do it! Now its all BS and while I will never do anything to hurt myself, I do wish that I can get on with life as I used to know it and want more quality that I seem to be losing monthly and with every change in my lungs!
Your vulgarity on any level is justified and say it like you mean it! Here's hoping we all have a better day tomorrow! I too have had just about enough of this "Crapola":biggrin1:

[Alysia]

I just wanted to say I think this disease sucks rotten eggs. No big crisis here at the moment, just tired and tired of watching someone I love deal with all this crapola. Excuse the vulgarity.

It sucks more when you see your loved one suffers then if you suffer yourself. Sending my prayers & love ♡♡♡

[whatthewhat]

Her latest blood results show a SED of only 2!but her pain has really been increasing. All her labs look good, in fact (hooray!) but the ANCA came positive (but low) again, so we are now scheduling a "maintenance" Rtx infusion. The big question is one or two doses...How I wish there was more data of pediatric Wegeners :-/ On the bright side I sure do enjoy working with her rheumy.

[whatthewhat]

Trust me, Tom, I swear like a sailor in real life :-D #madcopingskillz

[woz]

My Pr3 reading, which used to be negative has been anywhere from 8 to 15 for the last year, have tried a few things to get it back to negative, but nothing has worked, I have muscle and joint pain, it varies good and bad, all my blood tests are great, my rheumy is keeping a close eye on it, she would like to put me on RTX, but I have to wait till I have an official flare, before she can apply to get me on RTX, as Australia has RTX available on the medical benefits system, but not for Wegs. So I have many words I would like to say about WEGS , but I shall just bite my tongue............................................ .........

I hope things improve soon....Keep up the swearing, I know it makes me feel good, I can sometimes say up to 10 profanities in a row

Regards Woz....

[Alysia]

Her latest blood results show a SED of only 2!but her pain has really been increasing. All her labs look good, in fact (hooray!) but the ANCA came positive (but low) again, so we are now scheduling a "maintenance" Rtx infusion. The big question is one or two doses...How I wish there was more data of pediatric Wegeners :-/ On the bright side I sure do enjoy working with her rheumy.

In my case I got rtx 1000mg when in remmision and 2000mg when flaring or smoldering.
It sounds to me that she is in remsion or very close to it ?
As for the pains, Is she off pred ? Sometimes all you need is a bit of pred. 5mg in my case. I know its the pred because usually in the mornings I have pains all over and then 3 hours later, its gone, after the pred start to work. Also warm bath, walking and a cat on the lap can help. He needs to purr of course.

[Birdie]

As for the pains, Is she off pred ? Sometimes all you need is a bit of pred. 5mg in my case. I know its the pred because usually in the mornings I have pains all over and then 3 hours later, its gone, after the pred start to work.

Also warm bath, walking and a cat on the lap can help. He needs to purr of course.

I waited a few hours before taking the prednisone, pains went away in the morning just the same without it. Your results may vary.

And by the way, just for informational purposes, big white birds purr better than cats. Sheesh, cats can't fly, or bark at the mailman, or say hello when the phone rings, say come in when the doorbell rings, cats don't even go to the park with you and play with people...

[Alysia]

I waited a few hours before taking the prednisone, pains went away in the morning just the same without it. Your results may vary.

And by the way, just for informational purposes, big white birds purr better than cats. Sheesh, cats can't fly, or bark at the mailman, or say hello when the phone rings, say come in when the doorbell rings, cats don't even go to the park with you and play with people...

I tried to reduce the pred by only 1mg and the pains were crazy plus new crazy headache. I guess each one react differently.

[Birdie]

I tried to reduce the pred by only 1mg and the pains were crazy plus new crazy headache. I guess each one react differently.

I've been on 5 mg for two and a half years. I finally seem to be stable so I'm going to try reducing by 1 mg every few weeks. Stable... not good but stable. My hope is to reduce the fatigue to a point where I can function.

[whatthewhat]

.Keep up the swearing, I know it makes me feel good, I can sometimes say up to 10 profanities in a row ..

That made me laugh, thanks!!

[whatthewhat]

She's been off Pred for about 7 or 8 weeks now, I think. Her last Cytoxan was January, and her last RTX was November, so I'm more than okay with her having another infusion. I keep thinking of the American Revolutionary War famous quote, "Don't fire u til you see the whites of their eyes." Waiting until The Beast opened its eyes before blasting it again? It takes steady nerves, for this mom at least.

In March of 2014 she had a Pred burst to deal with a low appetite and some pain, and looking back that was a mistake. By Sept of 2014 her kidneys were involved, and we are doing all we can to forestall actual symptoms.

My own theory, for what it's worth which is extremely negligible, is that the thing that makes kids heal fast is also the thing that makes pediatric WG attack so swiftly and violently. Studies (or singular study?) show that remission does not last as long for a pediatric weggie, and relapses are worse. After 2014 I'm not looking to use the R word in connection with our girl until she's about 30 :-)

[Alysia]

My doc has another strategy. Please consider it. We are not waiting for the wg. Every 6 monts I get rtx. No matter what. I think there are more who get it this way. It make sense to me, at least. And keep me in remision.

[whatthewhat]

Look at you, Alysia, being a good auntie to our girl! Thank you. <3

We have discussed this so much, her rheumy, her dad, she, and I; how long do we wait before giving more meds, as well as which meds to give. The longest any weggie has taken Rtx is really not that long, given a lifespan. And certainly there is no long-term data on pediatric cases. We are monitoring her very closely, and giving it at the first sign, but also trying to buy time too. She has hopefully seventy years of Rituxan & Cytoxan & their cousins ahead of her, and we don't want to use up her allotment early. If we can avoid any damage, which we are by constant monitoring, then we feel it's the best option.

[Alysia]

Look at you, Alysia, being a good auntie to our girl! Thank you. <3



I am honored...
second time since yesterday that I get the "Auntie" title on line... yesterday, Phil's sister in law called me Auntie to her new baby.... made me tears....

[annekat]

Alysia, it touches my heart the way Phil's family loves you.... congrats on your new niece or nephew. :thumbup: