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View Full Version : Excited about my new medicine!



BookNut
01-14-2015, 11:00 AM
I got my first xolair shot on December 16. Within a few days, I felt an improvement. It is used for people who suffer from severe asthma and/or sinusitis that is resistant to all or most standard treatments. If you know anyone with severe asthma or COPD, I hope you will pass on this information. I am not sure if it would be of any help for Wegeners symptoms.

i was very worried about being able to afford the shots...but felt desperate to find help for my debilitating shortness of breath, wheezing and other respiratory symptoms. Well...today I found out that my monthly Xolair shots will only cost us $15! I was expecting to have to pay somewhere around $150. I have insurance, but for some reason, only the medicare part of it would cover the injections, leaving 20% for us to pay. The medicare negotiated price per shot is $800, so even 20% on a monthly basis was a lot of money. Looks like the company reduced the price based on a form we filled our with our income info. Hurray!! This is the only treatment that has worked for my persistent asthma and sinusitis. I might be able to get back to normal. Or at least what passes as normal for me!!


I am still not absolutely sure it is the Xolair that has improved my health since I have only been totally off prednisone for 12 days. But...i was only on less than 5 mg for the last two weeks of the taper....so "normally" I would be going downhill fast by now. Yay!! I get my second shot on Thursday. Fingers crossed!

Debbie C
01-14-2015, 11:38 AM
That's GREAT news Jacquie. Glad you were finally able to find something that helps and also that you are off the dreaded pred. Hope it keeps getting better for you ? How often do you have to get the shots? I also have copd and emphazemia (sp ?) I don't know if this would help me or not. But Good for you :) How long were on at % mg. of pred ?

BookNut
01-14-2015, 12:11 PM
That's GREAT news Jacquie. Glad you were finally able to find something that helps and also that you are off the dreaded pred. Hope it keeps getting better for you ? How often do you have to get the shots? I also have copd and emphazemia (sp ?) I don't know if this would help me or not. But Good for you :) How long were on at % mg. of pred ?

Maybe it would help you. It would be worth asking about. It does have a serious, though rare, side-effect that scared me off for a long time. How often you have to get the shots depends on a formula based on your IgE levels, height and weight. Some have to go twice a month. I only have to go once a month. And I get two shots actually...one in each arm. A little painful, but not to bad. The bad news is a rare side-effect is anaphylactic shock. So, I have to sit in the office for two hours after the shot to make sure I am ok. And I must carry an epipen because it can happen at anytime....even long after the shot. That is why it took me a LONG time to make the leap. My doctor is part of a large practice and they have never had anyone experience this side-effect. i felt my condition warranted the risk. I have been on 13 pred tapers in the past 15 months. Lately, the downhill slide starts before I am even finished. My sugar levels were getting out of control, in spite of a careful low carb diet. I could not make plans, and was mostly house-bound...often so short of breath that just navigating my kitchen was a major undertaking. It is lovely to be able to get up and DO STUFF!! Yay!!

If it is not contra-indicated for Wegeners, perhaps it would be worth looking into.

And thanks for the well wishes. Hope you are doing well these days!

annekat
01-14-2015, 01:30 PM
So good to hear, Jacquie, and getting off pred is a huge benefit in addition to your greatly improved breathing! I hope it continues to work so well and that you never have to use pred again.

mishb
01-15-2015, 08:03 AM
That is awesome news Jacquie

I don't think a happy dance is out of the question this early on in the treatment :tongue1:

:hug3::hug3::lol::lol::hug3::lol::hug3:

BookNut
01-15-2015, 10:19 AM
Thanks Anne and Michelle. I will let you know how I continue. Shot # 2 tomorrow.

Debbie C
01-15-2015, 12:30 PM
Good luck tomorrow Jacquie. Hope the benefits keep improving. I think I will hold off on those though ! My breathing doesn't seem to be nearly as bad as yours was and if there is a side effect to anything ..chances are I will have it. Keep us updated.

me2
01-15-2015, 03:08 PM
I'm so glad to hear this Jacquie. Sending best wishes for shot number 2. Since you are feeling better remember to take it a bit easy ok? Don't work yourself too hard right away (its what I usually do , that's how I know)

BookNut
01-15-2015, 06:09 PM
Debra.....Yes, the side effect is scary. Not to be taken lightly. But my activities were so severely limited I felt it was worth the chance.


me2..... Thanks for the well wishes. You sound like my husband who is always after me to not overdo. If I get a few days of feeling well...it's off to the races! I will try to be conservative.

will post an update in a few days, when I might be able to tell how the shots are working.

BookNut
01-21-2015, 04:02 PM
Just had my second round of Xolair shots and I feel even better than the last time. My wheezing has been reduced and my sinusitis is MUCH better. It is as if a faucet has been turned off, and I feel as if a weight has been lifted off ...not my shoulders, but my face. I had forgotten what it was like to breathe well. Yay!! Fingers crossed, the relief will continue.

mishb
01-21-2015, 07:45 PM
:hug3::hug3::lol::hug3::hug3::lol::hug3::hug3:

annekat
01-22-2015, 04:29 AM
I'm so thrilled to hear this, Jacquie! As long as the shots aren't causing any problems, which it doesn't sound like they are!

mrtmeo
01-22-2015, 04:44 AM
That is awesome!
keep us posted.

kaysee
01-25-2015, 07:49 AM
Awesome news. Hope everything continues to improve.

renidrag
01-25-2015, 03:08 PM
For someone who doesn't have Wegener's, you are a nut book. Love your posts, so happy you are feeling better.
Dale

BookNut
01-25-2015, 03:21 PM
Well....I keep hanging around anyway. This is just the best bunch of people. You rejoice in the up times and are there for each other in the downtimes. I hope to be able to contribute in some small way!!

renidrag
01-25-2015, 03:27 PM
You are and do.
Dale

mishb
01-25-2015, 08:03 PM
You are and do.
Dale

Couldn't agree more :biggrin1::thumbsup:

annekat
01-26-2015, 06:01 AM
Jacquie, I think I speak for everyone by saying we are supremely happy to still have you with us on the forum. You now know more about WG than just about any other person who doesn't have it! And we have learned some things about your medical condition which are valuable to our knowledge base. Plus, you are just a delightful person, and we would miss you so much if you stopped coming here!

BookNut
01-26-2015, 06:23 AM
I am blushing! Believe me...you guys have kept me going during those weeks when getting back and forth from the living room to the kitchen left me exhausted. Having online friends who understand is a true blessing. I do have close friends who understand the struggle because of their own illnesses, but there is too much time when one or more of us are unable to get together. It must be terribly isolating for those who do not have the connections that the internet has made possible. Especially on days like today. It is gorgeous out...but the temperature is in the single digits. Brrrrr. It is a great day to be inside and UNdecorating my Christmas tree at last. Christmas is a huge deal to me and the setting up and taking down jobs are huge. I divide it into manageable chunks. today is the last chunk. It is always a good day to give thanks to all the blessing in my life. You guys are very high up on my list. I appreciate what you do for me and for each other. You have my very best wishes for a happy and healthy New Year!!

annekat
01-26-2015, 06:50 AM
Sorry to make you blush, Jacquie! Thanks for the good wishes for the New Year, and all the same to you!

BookNut
01-26-2015, 07:41 AM
Blushing in a good way! :rolleyes1:

Thinker
01-29-2015, 09:57 AM
Wonderful news that you found a medication to help you function and feel better! You mentioned that you need to carry an epipen now. My daughter does also as she is allergic to tree nuts. The company that makes the epipen has a program where they will pay your copay. Unfortunately, I found out about it a couple days after I got them, but next time will use it. It's a form you download and turn into the pharmacist when getting your prescription filled. I can't remember the name of the company but found the link for the form on a website called coupons.com.

BookNut
02-26-2015, 09:32 AM
Have not been very active lately. Unfortunately I have had another downturn. Have not gone to the hospital...but my hubby has come very near to calling 911. I think a virus got me perhaps. I was not doing well before my monthly shot. They went ahead with it but the PA prescribed prednisone again. Bummer. I had been so happy to have achieved about 8weeks pred free. I also knew my allergist wanted me to have a pred free lab test done to check the effectiveness of my recent re-vaccination with the pneumovax. This is in aide of investigating a possible immune deficiency. I had to be pred free for a certain period after the vax, and I needed one more week. So, I decided to postpone the pred to my trip for my regular appt a week later with my pulmonologist. I have never been really bad when he has seen me, so I thought there might be some value in that. Probably not smart. It was a very bad week confined to my chair with only laborious trips to the bathroom. Went for the lab test. Walked the few hundred feet necessary to and from the car, and promptly had a gasping for breath, should we call 911 situation. Got over it. Took my prednisone and rescue inhaler and continued to pulmy. Hubby wouldn't let me walk a step...took me in a wheelchair. I guess my pulmy deals only with the very most serious cases. I only got in to see him because of my, since discounted, diagnosis of Wegeners. Anyway, he evidently did not think I was all that bad. Acted extremely surprised that I would be using my nebulizer every 3-4 hours, including during the night because I would wake up gasping. He did give me a new script for the coughing, and a script for thrush. When concluding our appt, he said "Well, we can schedule you for six months if you want, or we can just go to an as needed basis.". We decided on the six month...but I feel he is wanting to ease out of seeing me.

I still have great hopes for the Xolair. I know from my reading that it reduces asthma exacerbations. It does not eliminate them. If I can get down to even only 4 exacerbations a year, that will be a win for me. Meanwhile, I am better today. The worst part is trying to sleep when lying down or even reclining in my chair means a continuous annoying wheeze. But this too shall pass. I should be able to make dinner tomorrow night. My hubby will be thrilled!

annekat
02-26-2015, 01:51 PM
Jacquie, I'm glad you feel better today, but this all sounds pretty scary. I hate to hear of docs, and mine has done it, too, who sit there and say you don't seem all that bad when you have actually had potential 911 moments. And he talks of easing you out of his list of patients. I think if you are having any exacerbations at all he should be willing to be available to you on short notice, indefinitely. Unless there is someone else more suitable. Is he the one who prescribed the Xolair? Do you take any preventative measures like steroid inhalers? When I was having asthma those worked pretty well for me, but if yours is a lot worse, maybe the pred is better. The good thing is that if you have been without pred for 8 weeks, at least you know your adrenals are functioning OK, unlike many of us Weggies, and if you have to take short, or moderately short, runs of pred for the asthma, you won't likely run the risk of losing adrenal function. Of course, I understand your not wanting it at all. But it is better than 911 moments. Keep us updated!

BookNut
02-26-2015, 02:30 PM
Thanks Anne. This guy did not prescribe the Xolair. That comes from my allergist. She has seen me in bad shape. This was my pulmy. Whenever I have seen him, I have been on, or recently on, pred and so am in relatively good shape. I forgot to tell him that my PFT had dropped from 80% in January to 41% last week. But you would think me sitting in a wheel chair would have made the situation clear. He did order an xray...but made it optional as he was "only ordering it from an abundance of caution". I opted to have the xray done of course. Waiting for results. It bothers me, but not overly. My allergy/asthma doctor and my primary care are both awesome, so I feel I am getting good care overall.

Thanks for pointing out the upside of the adrenals. I had not thought of that. I DO take an inhaled steroid. Symbicort....two puffs, twice a day. I think it has been effective. I use a nebulized medicine with a long name. I think DuoNeb is the brand name. I only use it when I have shortness of breath and chest tightness. I've used it so much that I now have thrush. Awesome.

The scary syndrome is when my chest tightens up, and the cough is unproductive but persistent. I think it causes swelling of the windpipe and a reduced ability to fill my lungs with air. Sometimes the cough loosens up a little and I can't stop coughing long enough to get air. Fortunately, a throat lozenge will soothe that reaction...although I am always afraid I might inhale the lozenge. So I put it as far into my cheek as I can. I think the thrush was causing this throat irritation. I am now using a thrush "pill" that looks like a very thin Tums. I put it in my mouth and let it dissolve and do this 5 times a day. Between that and the pred, things have calmed down considerably since yesterday. Hopefully I can end the pred taper and the Xolair will help give me at least another 8 weeks off!

As always....thanks for always being there for me Anne!

mrtmeo
02-27-2015, 06:22 AM
Hi Jacquie,
I am really sorry you having so many breathing issues.
Just FYI, steroids feed fungus, such as thrush.
Did they ever do a HRCT (High Resolution Computed Tomography) scan of your lungs?

BookNut
02-27-2015, 08:10 AM
Hi Jacquie,
I am really sorry you having so many breathing issues.
Just FYI, steroids feed fungus, such as thrush.
Did they ever do a HRCT (High Resolution Computed Tomography) scan of your lungs?

Thanks! Yes, thrush is related to steroid use, though mine came on when I was not on prednisone. It is probably because I was not washing my neb equipment often enough. I never had the problem before, but thinking back, I used to be on an antifungal pill every day. My PCP thought my asthma problems might be due to a fungal infection. that proved not to be the case. Now that I don't take the pills I have to be more careful. I am now soaking the neb equip in vinegar and hot water every night. And I rinse my mouth after every use with mouthwash.

Not sure what kind of CT scans I have had. All I know is I have had 3 done without contrast and 1 with contrast. The most recent one was without contrast done at the Cleveland Clinic on October 10. Surprise, Surprise. Cleveland Clinic is the most inefficient organization I have ever encountered in my life. I have requested ..... three times now.....that they send all my records, including the actual CT on a CD to myself and my doctors. I have paid there outrageous fee of $35 so they can send the info to me personally. So far, not one of my four doctors has recieved the scan. And naturally, I did not get it either. I don't know why they have been so unhelpful to me. Everyone else seems to do fine with them. We have bent over backward to be patient. My conversations with them have been pleasant. I am basically a pretty friendly and reasonable person. After a three month run around, I finally had to express my displeasure to the doctor's secretary and it was only then that I got any kind of action. And yet...the inefficiency persists. Go figure.

As near as I can tell from the narrative of the latest CT, there is bronchiectasis, which has existed since the first CT, and there are some swollen lymph nodes. The pulmonologist tells me the chest CTs and xrays I have had show lungs in pretty good condition other than the minor bronchiectasis. He refers to my asthma as an "asthma variant". I have begun researching that. The most common variants seem to be cough variant asthma and sinusitis variant asthma. I think i have both going on. Cough variant asthma has been associated with high blood pressure meds, among others. I have asked my PCP if I can go off my blood pressure meds as a trial. My diet has improved greatly since I retired. I would take my blood pressure reading twice daily and go,back on the meds if the pressure goes up. She has agreed to a trial, so I will start that after I am done with the prednisone. Interestingly, all these breathing issues came on 4 years ago...just a few months after starting the blood pressure meds. The first pulmonologist I had switched me to Losartan, since he said that the kind I was on sometimes caused a cough. There was no improvement...so I never thought about it again.

Thanks for listening! I think both of us are interested in research. I am a retired librarian as you might know.

drz
02-27-2015, 10:23 AM
Hi Jacquie,
I am really sorry you having so many breathing issues.
Just FYI, steroids feed fungus, such as thrush.
Did they ever do a HRCT (High Resolution Computed Tomography) scan of your lungs?

Thrush is also more common in people with a suppressed immune system or after using an antibiotic too that sets up the esophagus for thrush fungus.

Sterilizing the neb equipment often and even our nasal rinse stuff is a good idea that is easy to overlook. Soaking in a mild bleach solution is one thing that seems easy and cheap too.

BookNut
02-27-2015, 11:01 AM
Thanks Drz. I am on long term antibiotics which might be a contributing factor. And a great reminder about the rinse bottles.

mrtmeo
02-27-2015, 03:05 PM
Thanks Drz. I am on long term antibiotics which might be a contributing factor. And a great reminder about the rinse bottles.
Probiotics can help with candida overgrowth especially, when taking antibiotics.
I wonder if that one person who was going for the fecal transplant had any luck?
They never came back to update.

mrtmeo
02-27-2015, 03:10 PM
When it comes to lung problems, scans really don't seem to give the best picture, but I was reading that they are working on an MRI for lung scanning.
This is something that sounds promising.

BookNut
02-27-2015, 03:30 PM
Ahhh...I have been very negligent with my probiotics. I vow to start them more regularly, beginning tomoorow. I tend to forget them because the effective ones have to be refrigerated! Out of sight out of mind. The MRI idea sounds promising. Thanks again!

mrtmeo
03-01-2015, 02:02 AM
Ahhh...I have been very negligent with my probiotics. I vow to start them more regularly, beginning tomoorow. I tend to forget them because the effective ones have to be refrigerated! Out of sight out of mind. The MRI idea sounds promising. Thanks again!

You can also, get many more probiotics than yogurt from Kefir.
The sell it in the grocery stores somewhere near yogurt

BookNut
03-01-2015, 04:18 AM
You can also, get many more probiotics than yogurt from Kefir.
The sell it in the grocery stores somewhere near yogurt

I actually take probiotic pills with a probiotic count in the billions. My hippie PCP is adamant about taking them. she has me on a high fat ( good fat), low carb diet to help with inflammation. My cholesterol was not terrible, but the LDL was on the high side and the good cholesterol on the bad side before I started the diet.

I thought she was a bit crazy, but tried it. My bad cholesterol rose slightly, then fell about 10 points, and my triglycerides dropped 30 or 40 points. My good cholesterol rose about 30 points. All this by eating more meat, more eggs, and switching to whole milk, heavy cream, and full fat yogurt. Skim milk has as many as 12 grams of sugar per serving, while heavy cream has less than 1 gram. The only full fat yogurt I can find is Fage...and even that has reduced the fat content somewhat and added sugar to compensate, which is true of pretty much all low fat foods. My doc feels it is sugar, not good fat that is making us all sick.

Anyway...I have seen the Kefir. Will look at the carb counts.

mrtmeo
03-01-2015, 05:33 AM
I actually take probiotic pills with a probiotic count in the billions. My hippie PCP is adamant about taking them. she has me on a high fat ( good fat), low carb diet to help with inflammation. My cholesterol was not terrible, but the LDL was on the high side and the good cholesterol on the bad side before I started the diet.

I thought she was a bit crazy, but tried it. My bad cholesterol rose slightly, then fell about 10 points, and my triglycerides dropped 30 or 40 points. My good cholesterol rose about 30 points. All this by eating more meat, more eggs, and switching to whole milk, heavy cream, and full fat yogurt. Skim milk has as many as 12 grams of sugar per serving, while heavy cream has less than 1 gram. The only full fat yogurt I can find is Fage...and even that has reduced the fat content somewhat and added sugar to compensate, which is true of pretty much all low fat foods. My doc feels it is sugar, not good fat that is making us all sick.

Anyway...I have seen the Kefir. Will look at the carb counts.

It sounds like you got it all down pat and you have a dr that, obviously, has read the proof on LCHF(Low Carb High Fat) diets.
Another good probiotic product is organic, grassfed, raw milk colostrum.
This is the first milk designed for the calf and has all the immunoglobulins necessary to help the calf's immune system function.
Finding a good quality colostrum is tricky and sometimes you have find a farmer if your state allows.