Rejoining the masses

[renidrag]

I am quite sure I am falling out of remission. Have coughed up blood for three days. Nose bleeds daily although no other symptoms other than fatigue which never went away. Going to Boston Monday morning to see Dr. Monach, called today and they had a cancellation. It has been a very stressful last few months as in October, I was diagnosed with CML (Leukemia), in November, my sister passed away. Yesterday I went to pick up my meds and found out the co-pay for Symbicort is $280.00 and Gleevec co-pay is $3000.00 a month. What are you going to do? Called Hematologist and he is going to ask his Pharmacy if they can do something for me. I tried Novartis but they won't do anything for Medicare patients, you have to be totally self pay. I am going to do the Symbicort with the hope of getting on "extra help" for which I have already applied. If that goes through, my co-pays will go down to under $5.00. Hopefully, will learn next month. Also, the Commonwealth of Massachusetts is checking to see if I am truly disabled. Had to fill out eight pages of BS and mailed it last Monday. Actually I wanted them to ask the United States Social Security System what they thought but I didn't. I wish for the day when it all works out. Best to you,
Dale

[Dirty Don]

Hang tough Dale...been an ugly couple of months for you. But, there are always clouds before the sun comes back...you'll get this all done!

[annekat]

Sheesh, Dale, I'm sorry you are going through all this. Especially if you feel you are having a flare. If that is true, Dr. Monach should be able to confirm to the satisfaction of Massachusetts that you are disabled, and even if you aren't flaring, he should be of some help there. But it sounds like you are.... most of us who have flared can recognize the signs pretty well. I don't know what Massachusetts needs to know, since you are on Federal disability and they aren't challenging it. I guess it is different in every state. I sort of figured that at our ages, especially if you are old enough to collect regular SS benefits, that the disability would just continue, with a chronic disease like WG. And considering that you have CML, too! A friend of mine is about 70, and at some point they just changed his SS Disability over to regular SS benefits, with the payment being the same, him having the same Medicare benefits, all that. I'm not clear on the details and it certainly is difficult to find out any concrete information from them, so I just ride with it and hope for the best. If I had to pay those copays for drugs, I'd certainly have to apply for Extra Help, too. I'll be anxious to hear how it all goes. Best of luck.

[debra]

Dale, my friend, wow, this is a lot of stress. No wonder you're flaring! Dale my mom is on symbicort, and had a tuff time getting it. I can try and get info, from my brother if you'd like? Dale they are cracking down on all disability here, as government is running out of money. It's a real mess, but prepare youre self for the inconvenience. I'm wondering Dale, with this new diagnosis, how you're treatment will change? I'm so sorry about you're sister, though she's in a much better place, its still so hard for the ones left behind, until we are reunited again someday... Dale, this is a lot, but Dale you have a kick a**, doctor! So I'm confident you'll be fine once again. Dale, we are neighbors, and family here, so if you ever want to vent, I'm here..... Best of luck Dale, and I'm sure you'll keep everyone posted? Deb.

[Birdie]

I wanted them to ask the United States Social Security System what they thought but I didn't.

Dale, life sucks sometimes, been there done that, rode on past most of it and still dealing with the rest. Just find a way to put it in perspective and keep smiling.

On the SSDI issue... I qualified on the basis of having no real immune system, massive fatigue, and constant infections. Having Wegener's IS a terminal condition. You apply for SSDI and indicate that you have a terminal condition. That causes the system to expedite your claim. In my case it only took about four months to get approved, same with my wife's case (breast cancer). HOWEVER... you still have to make your case, leave no room for doubt in the initial application. It's not so hard and I'll be happy to explain what it takes, but not here and now, I'm off to the VA hospital for cardio tests...

[debra]

Not to hijack, but good luck Gary, with you're tests. And great advice, as usual.... Debra.

[Middlesista]

Dale -good that you will be seeing Dr on Monday. Can't believe the co-pay for your meds -crazy. Some drug companies have programs that help but to be honest I do not know that much about them so I am sorry I am not much help I feel like I am getting to know some folks here in the forum to some degree and when I read your post and all you have been dealing with I just had to look to the heavens and say enough please - folks are dealing with so much with this disease and then to have more issues piled on?? I am not a believer in "you are only given what is felt you can handle" - nope, that is one of those trite statements that are meaningless to me although I acknowledge that some find comfort in believing this - each to their own

Dr Monach should get you back in remission soon and it sounds like Anne and Birdie have some good suggestions for those SS people

Birdie - hope your visit with the VA went well for you. I bet they enjoyed your company.

[renidrag]

Thanks to all, I am presently on SSDI and have been for three years, no problem with the feds, only the state. Coughed up three more clots today so far. Another day in Paradise. Thanks again.
Dale

[debra]

Dale, you and Phil and Al were my first posts, reading back, almost four years ago now. Wow, time flyes. I feel like I've known you for years. I have, I guess. I feel all this with you. It's a lot of crap. Dale, when you see Dr. monarch on Monday, ask him about samplesf for the symbicort. Sometimes they hook you up. This helped me when I had pred forte eye drops for over a hundred bucks, for this tiny thing. If not ask the prescribing doctor or his nurse. Dale, you get it, ask somebody! Dale, ignore that extra f, above... Dale, when it rains, it pours... You will be back in remission in no time. It's all a test of strength...... Debra.

[vdub]

I'm going through some of the same issues, Dale. I'm just dog tired and feel pretty crappy most of the time. My blood tests returned a crp of 10.1 yesterday. Can anyone tell me if that is high, sort of high, or no worries?

And, my medical insurance issues are in league with you too, Dale. I go on MediCare in a few months. Would you believe it is going to be worse than what I'm already on. At the moment, I'm paying about $350/mo co-pay for my meds. That's not much in the big scheme of life, but it puts a dent in the beer budget. And, there's always the fear of charging off into the unknown and getting used to a new system. What's the old saying? Life's a bitch and then you die? Believe that's it....

[Birdie]

Life's a bitch and then you die?

Life's a beach, go swimming.

[debra]

Vdub, hi. Yes I believe it! Welcome to Medicare. Good and bad in everything I guess. Vdub, the labs with you're crp should have a reference range. All labs are different, so look on the sheet for the ranges, and hope you're on the lower end. Good luck, Vdub. Debra.

[debra]

Birdie, oh no, I think we think alike? Scary for you! Hope you made out ok, at cardio? Forgive me, as I don't mean to hijack... I'm a bad influence, I guess... Deb.

[annekat]

Not to hijack, but good luck Gary, with you're tests. And great advice, as usual.... Debra.Deb, I wouldn't call that hijacking, expressing positive thoughts toward someone in the discussion who is having tests.......

[Pete]

Hi Dale,

Hope Dr Monach can get you back to feeling better. I wonder how wegs and leukemia interact? Sounds like a bad combination. I'm sorry to hear about your sister.

Vdub, normal for C-RP is <10. Yours is a little high...

[Alias]

Vdub, do you get the high sensitivity CRP or the "regular" CRP? I get the HS version, and it has been as low as 3.4 and as high as 22.2. I just looked at a graph of my results since diagnosis and it is all over the place. Many of the higher values have occurred when I am feeling OK and my other labs are more or less OK. I have been told by one physician that the HS version is 10x too sensitive for meaningful monitoring of rheumatologic activity but I have not yet pursued this with my treating doc. As you know, CRP is a non-specific measure of inflammation, so must be read in context of your other labs and overall clinical picture. Hope you get out of the "crappy" zone soon.

[debra]

Anne, hell there. Anne thanks, I erased the comment on the color pink. Just joshing Anne. Hey, I have a question. Which is more valuable for you all in a CBC, sed rate, or crp? For some reason my doctors aren't concerned with crp, but sed rate... Deb.

[debra]

No! Hello, sorry you guys! I pressed my o! Me.

[annekat]

Anne, hell there. Anne thanks, I erased the comment on the color pink. Just joshing Anne. Hey, I have a question. Which is more valuable for you all in a CBC, sed rate, or crp? For some reason my doctors aren't concerned with crp, but sed rate... Deb. Hell, there, Deb. Missed the pink comment, but got a pink bandana at a memorial service for a 34 year old today. See, now I'm skating on the edges of hijacking, myself! But good question you ask about the tests. My doc just does a SED rate test on me, no CRP. I don't know the answers about which is better. I think I've heard the CRP can show a recent change quicker, but not sure about that.

[debra]

Anne, I even checked that the o was there! Then when I wrote there, it took off my o! I see it now... Anne I think it may be sed rate, that's more sensitive, though I'm not in a google mood. When the cells? Sink to the bottom, and the time it takes? Something like this. Weird my crp is low, when I'm in the most pain! And higher with less pain? Why me? Why all the weirdness!!!!!!! It's just nuts..... Deb.

[drz]

Hell, there, Deb. Missed the pink comment, but got a pink bandana at a memorial service for a 34 year old today. See, now I'm skating on the edges of hijacking, myself! But good question you ask about the tests. My doc just does a SED rate test on me, no CRP. I don't know the answers about which is better. I think I've heard the CRP can show a recent change quicker, but not sure about that.
SED rate or ESR is more longer term measure than CRP. Both together can show what is going on better than either one alone. My local clinic couldn't do the SED rate right until recently so it might take a better lab to get that one correct.

[annekat]

SED rate or ESR is more longer term measure than CRP. Both together can show what is going on better than either one alone. My local clinic couldn't do the SED rate right until recently so it might take a better lab to get that one correct. That's pretty much what my doc said, that the SED rate is more long term and the CRP more short term, but he still persists in only ordering the SED for me. I'd have to push him for more of an explanation some time.... I guess he feels things are going OK the way we've been doing it.

[debra]

Drz, thank you. Anne, thanks. I was to lazy to look it up.... Deb.

[annekat]

Drz, thank you. Anne, thanks. I was to lazy to look it up.... Deb. me, too, though I've looked it up in the past.

[Alysia]

Dear Dale, I am sorry for the loss of your sister and for the tough time you are going through.. sounds like a flare, but if you catch it fast enough, you can beat it fast... Hang in there my friend.. sending many prayers and lots of love ♡♡♡

[Debbie C]

Dale,I am soooooooooo sorry for everything you are going through. It could be the stress of everything happening to you brought on this flare. Hell..if my drugs went up that high,I would probably have a flare too !
Is that one drug that $3000.00 for leukemia ? What made them test for this ?
I don't know why they are questioning your SS especially with the new dx. Maybe your dr can write a note for you Monday and tell them whats going on and also for extra care. I was on that when I was on Medicaid but I can't qualify for it now since I make to much money ( Huh..thats a freaking joke ) Tell that to the congress !!! If you keep getting worse please don't wait till Monday go to the e.r.
I just went to an obgyn on Thurs. on saw the PA about my hormones and she was right on on so many things that pred does to our system,so she ordered a bunch a bloodwork so I went today and between that and CC ,they took 10 viles.Anxious to see the results. My CC dr always checks my sed and crp amoung other things.
Vdub like Pete said if you have the norm crp ck you are a little high. Have you seen your pulmy yet ???
Both of you guys take care

[debra]

Deb, so funny. Had to hold off on my joke, as its not a good posting day. I little post malfunction here? I came back, all three times just to see what you had to say, only to find out, its the same thing you said twice before! So funny... Deb, hope you're good..... Deb.

[Debbie C]

Yea ,I don't know what the heck happened. I was on my desktop and it wouldn't post. I'm on my laptop now and see it was on there 4 times !!! I still have the circle going around on my desktop..thinking about posting. I was surprised to see it on here.
Just wanted to get my point across !!!!! ha ha I deleted them and will shut down my other comp now.I think its time I shut down too,rough day

[Pete]

Yea ,I don't know what the heck happened. I was on my desktop and it wouldn't post. I'm on my laptop now and see it was on there 4 times !!! I still have the circle going around on my desktop..thinking about posting. I was surprised to see it on here.
Just wanted to get my point across !!!!! ha ha I deleted them and will shut down my other comp now.I think its time I shut down too,rough day

Sleep tight!!!

[debra]

Deb, so funny... Ya im calling it a day too. Today I realy topped off all my little posting dilemmas... Good night Deb. Hi, Pete. Hope you're doing well.... Debra.

[mishb]

Dale, such a sucky disease this WG, and to top it off with all of the other things going on.......I am so sorry

I wonder if the coughing up of blood is just because your nose has been so bad and it is getting down your throat. This is my wish my you. My wish that you do not have the WG dog waking up and causing such difficulties for you.

In regards to the Leukemia, I had 6 months of specialists thinking that I had lymphocytic leukemia or CLL, and all it ended up being, was my B cells and my lymphocytes going crazy due to inflammation and also methotrexate. I hope and pray that this is the same for you and you don't actually have leukemia, just that horrible dog doing crazy things.

All the best wishes to you for a great result on Monday

[debra]

Dale! ???????????????????????????????????????????????? Dale, I had to go back to make sure this post actually existed, and I wasn't dreaming. But since I don't Realy sleep anymore, can't Realy dream, so sure enough, here it is! Dale, did you, frighten Dr Monach, telling him, a nut job is trying to get in? Dale, how did everything go Monday? Dale? Dale, you started this thread! I didn't! Dale, its ok, just hope alls good.... Deb.

[renidrag]

Sorry, haven't been feeling very well. Gave blood and chest x-ray yesterday at noon so haven't heard anything yet but Dr. Monach didn't find any inflammation in my nose so waiting for the x-ray and blood results. He doesn't think it is WG. I am tending to agree with Anne that my nose bleeding could be running down my throat at night. I called Pulmonologist Dr. Ashburn on the way home and he gave me a months supply of Symbicort. I just now got off the phone with my new best friend Alex from BMC and he enrolled me in a (my words) health safety net and my Gleevec copay will now be a whopping $25.00. He also said it will lower my Symbicort copay when that comes up for renewal. So grateful. Deb, you have to get to Boston!
Dale

[debra]

Dale, good you got the symbicort, I'm guessing the samples? All this will work out Dale, just a real pain in the a**you sure didn't need right now... What Anne said makes sense. So I'm sure everything will work out fine... Yes, Dale, Dr. Monach, is my goal, him and Merkel, have been since 2012. But since Merkels gone, its Monach I am aiming for. Also Dr. Foster... We will see..... Dale, get rest, and try remaining as stress free as you can. Deb.

[Debbie C]

Dale,that is such great news about everything. Hope the chest x-ray and blood work comes back fine. I'm sure it will ....they should of gotten the results by now and you would think they would call you if there was an issue. Keep us posted and get some rest.