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First Iv Ig Transfusion Today


rubytuesday
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Just an update that I had my first IV Ig (Privagen I think although the nurse said Hizentra, and Hizentra comes in subq not IV solution) for the PIDD/CVID today. With the drive, total time was 9 hours. Transfused the Ig very slow rate after pre-med with benadryl and acetamenophen. A little after about 1/2 way thru I felt a little light headed/chest pain (but that's not atypical for me). BP was 92/62 before we left and got as high as 102/44. The systolic mostly hung in low 50s and diastolic in low 90s. So far so good for me. Hope the next 2 go off as well (and hoping don't start feeling fluish/migrainish tomorrow). Am planning to lay low tomorrow. I was having some shortness of breath/difficulty breathing/tight throat but was thinking it was irritation with the Vocal Cord Dysfunction from the cold room and the terrible spicey lunch they served (also high sodium and caffinated drink--when you need to overhydrate with the Ig).

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GOOD LUCK with your treatments!!!!!! I didn't have good luck with mine (ended up in anaphylaxis and now going through rejection of the IVIG for the next 10 weeks- but we found out after the fact that I have really mean antibodies who don't like to play nicely :) I don't want to scare you because those types of reactions are VERY rare. The pretreating you is important and you may feel slightly flu like tomorrow and might have a headache as well... but mine were always worse on the day of so you may be lucky and feel better tomorrow than you thought you might.

Sounds like your vitals did very well during the infusion. My BP (which is extremely low usually as I have OH) would get really high- once as high as 190/130. SO the fact that your vitals stayed stable is a good sign. I also had problems with shortness of breath after treatment but that is not unusual for me either, I struggle with shortness of breath of a daily basis.

I pray that you continue to have successful treatments and that this treatment work for you. I went though 7 treatments before I had to stop so please feel free to ask if you have any questions... just because it didn't work for me, I learned a lot about the treatment and from the doctors.

Jen

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Yikes! Glad to hear it went okay, though! Can you bring something to eat/drink next time? You would think they would serve healthier food to people who needed these types of treatments!

Sandy

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hey Ruby, glad it went well. I looked at the Ivig chart and it looks like that one has no sugar, sodium and very low iga. All really good as those things in the products are the ones that may cause reactions.

You can keep taking tylenol for a few days. I've been taking that and the benedryl and zantac for a few days after to try to keep the headache down. I'm still getting one a day or two after but they have been milder and I'm getting rid of them faster now. Also hydrate hydrate for a few days after too, not just before. I wouldnt drink cafeine type products during as they are diuretics and get rid of fluid, opposite of what you want. Hope you start getting better and treatment makes a difference for you. It is good they went really slow. My BP is usually higher after infusion too. It adds stress to the kidneys which cause a spike in bp. Though I am one of those that goest higher on standing. It is much better then it was with the swings being closer together and my heart rate staying under a 100, but My resting heart rate also starts in the low 50's, which is why they didn't realize that I'd had a 30 point increase in the 80-90 range and that I was still going into the 120's at it's worst.

JenGlen, don't know if you read my reply to your post on rejection, but you posted which immunoglobulins were low in you, it looked like it was a primary immune def called "selective IGA" if you have that ivig can be very dicey and if there was any iga in the ivig infusion they gave you, it would explain your reaction and rejection. I also think that they are having you wait 10 weeks to retest your labs, as that is how long it takes to completely clear IVIG out of the body for tests not to be squewed by the ivig, not necessarily because you are continuing to reject it, they already know that occured. I sure hope that it didn't cause any long term damage to you. I was so worried about you starting it when you were in the hospital, because I could tell that you didn't have enough info to make an educated choice. It would still be good to know what ivig product you were on, as there are several that start with gamma.

I still am furious at that mayo neuro for insisting you continue and/or not knowing the results of your immunoglobulin test before starting you on this. Hopefully your local guy educated him on his error, before shutting down your treatment. Ivig when handled right can be a good tool for treatment, but it has to be given under strick guide lines and it is not for every immune def disease. I'm keeping you in my prayers and pray a solution comes that will get you more functional with that big family of yours. I wasn't able to have children, so I always feel like they are a blessing and a gift. Hopefully your health issue will teach them understanding, kindness and compassion. I'm sure they know you love them, even when you stuggle to care for them. We had foster kids in our home growing up and it made me aware of the world outside of myself and that things are not always easy. It was a good experience.

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Arizona Girl,

You are so informed... I sure wish I would have had access to your brain before I made my decision. All I know is that I was told it was such a benign product and there was nothing to worry about. I was so sick at the time that I can hardly remember the conversations so I definitely wasn't informed enough (my own fault- but we have six children and hubby had to be home). I should have asked for a patient advocate.

I don't have my records handy right now but I am almost positive that my IVIG treatment was Gammaplex. I had 5 initial treatments in the hospital which didn't have serious side effects ( bad, bad headache, very achy body, HIGH BP- especially for me because I am usually very low- but it got to be over 180 or 190/something. The second morning at Mayo I woke up with a horrible herpes break out on both lips, face and near my nose. Never had a fever ( but was discovered during autonomic testing that my body is incapable of having a fever- not good for infections). Each day I felt a little worse and I did have red, swollen legs but no blood clots ever detected. By the time I was discharged to my home hospital I had two more treatments. First one, had pretty much the same symptoms but BP was higher, achiness worse, cold sores worse, headache worse and that night I developed hives. But they also put me on a new med and thought the hives were from that. It was the second IVIG at home hospital (discharged by this time so done outpatient- thankfully with a nurse who knew what she was doing!!!!) This time I had effects must faster, face turned beet red, trouble breathing, lips swelling, and then she said I was anaphylaxing and stopped treatment. They sent me to an allergist who said that he didn't think that IVIG for autonomic issues was responsible (just his opinion- probably doesn't like Mayo and said its not FDA approved for such treatment and studies don't show that it is very successful.. okay then) and he said they wouldn't be giving it to me again even with a different brand.

Finally got to talk to my doctor in Mayo and he said that, yes, definitely can't be taking IVIG and will have to wait 10 weeks until it is out of my system. I have been VERY sick though since. He ordered some blood work last week and it showed that a lot of my labs were abnormal. Hemoglobin, red blood cells, hematocrit,(all too low and down by quite a big change) kidney function abnormal, white blood cells very high and other labs abnormal but I can't remember them all. I have had problems with LOTS of urinary retention and swelling since so I am little worried about my kidney functions. I am supposed to go in tomorrow and get some labs done to see where everything is now. I have been vomiting a lot over the last few days so I am just hoping that is my body trying to get it out of its system. I really hope I am NOT sick for the whole 10 weeks!!!! As it is, none of my autonomic dysfunction/failure neuropathy has improved at all. Still have horrible OH (BP when I wake up is 60/40)... sitting and standing is not even a possibility at this point. Because of 6 concussions in just a few months I have to be VERY careful about hitting my head. I try to stand a few times a day, with someone right by me, just to get some upright posture, but I am usually in syncope in under a minute. Initial cognitive assessment showed quite a bit of dysfunction (well, not horrible, but speech, ability to recall words, retention, memory) but this was a quick assessment- have a more thorough one in March after I have a chance to heal. And still have this undefined auto immune disease which I have no idea what it is or means. AND Diagnosed with a "connective tissue disorder" that is "probably" Ehlers Danlos but she didn't want to push that (the genetic counselor) because it could sent the doctor down the "wrong track"...Made NO sense to me. IF I have something, then diagnose it, right??? If I don't, then dont??? I am also diagnosed with Fibromyalgia... what's the difference???? I argued with her but she just wouldn't budge so I am seeking a second opinion about that...

Mayo neuro tells me when I go back in March they will have Plan B for me..... but he is very hesitant to try any immune therapy. I just don't know what to do at this point. I feel like I took 10 giant steps backward but at least I have a DX (or several I guess). But I am hanging in there. Trying to stay positive and count my blessings every day. Thank you for all of your help!!!

Jen

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GOOD LUCK with your treatments!!!!!! I didn't have good luck with mine (ended up in anaphylaxis and now going through rejection of the IVIG for the next 10 weeks- but we found out after the fact that I have really mean antibodies who don't like to play nicely :) I don't want to scare you because those types of reactions are VERY rare. The pretreating you is important and you may feel slightly flu like tomorrow and might have a headache as well... but mine were always worse on the day of so you may be lucky and feel better tomorrow than you thought you might.

Sounds like your vitals did very well during the infusion. My BP (which is extremely low usually as I have OH) would get really high- once as high as 190/130. SO the fact that your vitals stayed stable is a good sign. I also had problems with shortness of breath after treatment but that is not unusual for me either, I struggle with shortness of breath of a daily basis.

I pray that you continue to have successful treatments and that this treatment work for you. I went though 7 treatments before I had to stop so please feel free to ask if you have any questions... just because it didn't work for me, I learned a lot about the treatment and from the doctors.

Jen

Well, Jen. What I have learned, what they gave me IV is only a 10% concentration of antibodies. The plan is to switch me after 3 IV Ig monthy doses to subq Hizentra, a 20% concentration, at home. I suspect this may be where I'll run into the most problem with but am keeping my fingers crossed. Since the Hizentra is more concentrated, you're getting a lot more antibodies and the solution is much thicker which is more traumatizing to the tissue. They infused my IV Ig over 5 hours at a very slow rate so to try to minimize/avoid reactions/side effects (waiting 1 hour after pre-treating me before starting the drip). I wish you all the best.

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Arizona Girl,

You are so informed... I sure wish I would have had access to your brain before I made my decision. All I know is that I was told it was such a benign product and there was nothing to worry about. I was so sick at the time that I can hardly remember the conversations so I definitely wasn't informed enough (my own fault- but we have six children and hubby had to be home). I should have asked for a patient advocate.

I don't have my records handy right now but I am almost positive that my IVIG treatment was Gammaplex. I had 5 initial treatments in the hospital which didn't have serious side effects ( bad, bad headache, very achy body, HIGH BP- especially for me because I am usually very low- but it got to be over 180 or 190/something. The second morning at Mayo I woke up with a horrible herpes break out on both lips, face and near my nose. Never had a fever ( but was discovered during autonomic testing that my body is incapable of having a fever- not good for infections). Each day I felt a little worse and I did have red, swollen legs but no blood clots ever detected. By the time I was discharged to my home hospital I had two more treatments. First one, had pretty much the same symptoms but BP was higher, achiness worse, cold sores worse, headache worse and that night I developed hives. But they also put me on a new med and thought the hives were from that. It was the second IVIG at home hospital (discharged by this time so done outpatient- thankfully with a nurse who knew what she was doing!!!!) This time I had effects must faster, face turned beet red, trouble breathing, lips swelling, and then she said I was anaphylaxing and stopped treatment. They sent me to an allergist who said that he didn't think that IVIG for autonomic issues was responsible (just his opinion- probably doesn't like Mayo and said its not FDA approved for such treatment and studies don't show that it is very successful.. okay then) and he said they wouldn't be giving it to me again even with a different brand.

Finally got to talk to my doctor in Mayo and he said that, yes, definitely can't be taking IVIG and will have to wait 10 weeks until it is out of my system. I have been VERY sick though since. He ordered some blood work last week and it showed that a lot of my labs were abnormal. Hemoglobin, red blood cells, hematocrit,(all too low and down by quite a big change) kidney function abnormal, white blood cells very high and other labs abnormal but I can't remember them all. I have had problems with LOTS of urinary retention and swelling since so I am little worried about my kidney functions. I am supposed to go in tomorrow and get some labs done to see where everything is now. I have been vomiting a lot over the last few days so I am just hoping that is my body trying to get it out of its system. I really hope I am NOT sick for the whole 10 weeks!!!! As it is, none of my autonomic dysfunction/failure neuropathy has improved at all. Still have horrible OH (BP when I wake up is 60/40)... sitting and standing is not even a possibility at this point. Because of 6 concussions in just a few months I have to be VERY careful about hitting my head. I try to stand a few times a day, with someone right by me, just to get some upright posture, but I am usually in syncope in under a minute. Initial cognitive assessment showed quite a bit of dysfunction (well, not horrible, but speech, ability to recall words, retention, memory) but this was a quick assessment- have a more thorough one in March after I have a chance to heal. And still have this undefined auto immune disease which I have no idea what it is or means. AND Diagnosed with a "connective tissue disorder" that is "probably" Ehlers Danlos but she didn't want to push that (the genetic counselor) because it could sent the doctor down the "wrong track"...Made NO sense to me. IF I have something, then diagnose it, right??? If I don't, then dont??? I am also diagnosed with Fibromyalgia... what's the difference???? I argued with her but she just wouldn't budge so I am seeking a second opinion about that...

Mayo neuro tells me when I go back in March they will have Plan B for me..... but he is very hesitant to try any immune therapy. I just don't know what to do at this point. I feel like I took 10 giant steps backward but at least I have a DX (or several I guess). But I am hanging in there. Trying to stay positive and count my blessings every day. Thank you for all of your help!!!

Jen

Jen, Many of those issues with the blood counts and kidney function , headache, herpes, hives, lips swelling, difficulty breathing (had you not had those prior to) could definitely be from the Ig product (according to packaging insert). So sorry you experienced that. You never know with each vial given since each vial contains components from different individuals. I hope they figure things out for you.

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hey Ruby, glad it went well. I looked at the Ivig chart and it looks like that one has no sugar, sodium and very low iga. All really good as those things in the products are the ones that may cause reactions.

You can keep taking tylenol for a few days. I've been taking that and the benedryl and zantac for a few days after to try to keep the headache down. I'm still getting one a day or two after but they have been milder and I'm getting rid of them faster now. Also hydrate hydrate for a few days after too, not just before. I wouldnt drink cafeine type products during as they are diuretics and get rid of fluid, opposite of what you want. Hope you start getting better and treatment makes a difference for you. It is good they went really slow. My BP is usually higher after infusion too. It adds stress to the kidneys which cause a spike in bp. Though I am one of those that goest higher on standing. It is much better then it was with the swings being closer together and my heart rate staying under a 100, but My resting heart rate also starts in the low 50's, which is why they didn't realize that I'd had a 30 point increase in the 80-90 range and that I was still going into the 120's at it's worst.

JenGlen, don't know if you read my reply to your post on rejection, but you posted which immunoglobulins were low in you, it looked like it was a primary immune def called "selective IGA" if you have that ivig can be very dicey and if there was any iga in the ivig infusion they gave you, it would explain your reaction and rejection. I also think that they are having you wait 10 weeks to retest your labs, as that is how long it takes to completely clear IVIG out of the body for tests not to be squewed by the ivig, not necessarily because you are continuing to reject it, they already know that occured. I sure hope that it didn't cause any long term damage to you. I was so worried about you starting it when you were in the hospital, because I could tell that you didn't have enough info to make an educated choice. It would still be good to know what ivig product you were on, as there are several that start with gamma.

I still am furious at that mayo neuro for insisting you continue and/or not knowing the results of your immunoglobulin test before starting you on this. Hopefully your local guy educated him on his error, before shutting down your treatment. Ivig when handled right can be a good tool for treatment, but it has to be given under strick guide lines and it is not for every immune def disease. I'm keeping you in my prayers and pray a solution comes that will get you more functional with that big family of yours. I wasn't able to have children, so I always feel like they are a blessing and a gift. Hopefully your health issue will teach them understanding, kindness and compassion. I'm sure they know you love them, even when you stuggle to care for them. We had foster kids in our home growing up and it made me aware of the world outside of myself and that things are not always easy. It was a good experience.

Day 2 after my infusion--still knocking wood--have felt pretty good (surprisingly so quickly) in the morning, with more energy. Yesterday I did 2 loads of laundry and changed sheets and was going to go with DH + DGD to get her a doll she'd been wanting (but something came up). As day drew on, became more and more fatigued and throat sore a bit. But get this (and I apologize as gross)...in Dec. when immuno looked into one ear--waxy. I use q tip very gently as if I go the slightest too deep I get ear aches. I also use low blow dryer after showering on the ears after towel drying. Last night 2 inch long bloody gunk surfaced from the ear that I could literally pull out in a thick wide piece. I did not notice any change as far as hearing but I'd never in my life had anything like that. It's usually my other ear that hurts, but this was mixed with blood. I haven't had to take any tylenol or anything else. I'm going to tackle dusting, vacuuming and mopping floor this morning before the surge drops. I am still pushing fluids like crazy and am hoping this is helping. The thing is what they gave me (nurse said was Hizentra but must have been the privagen my immuno mentioned earlier) was 10% concentration. This Hizentra is much thicker and more concentrated, 20% for when I get to switch to home subq. That may be where I could run into higher chance of side effects. They waited 1 full hour after my pre-treat and would infuse very slowly over 5 hours. That also probably helped to reduce risks of side effects. But you never know as each vial you get has different people's antibodies. Thanks for the support. I hope yours go better. I was wondering if I should take tylenol or benadryl the next day (received absolutely no 'discharge instructions' per se, rather than the sheet that tells you what to watch for/call doc for/go to ER for). Sure hope others will go as well. I imagine they will up the rate a little with my next infusion.

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Why did you need it? My IgG test was low. Did your insurance cover it? Hope it works!

I have PIDD/CVID, my IgG total is ok but the subclasses are low IgG 2, IgG3, IgA, T cell count is a little low, T helper cell count is low, and I do not respond by making antibodies to pnuemonia vaccine challenge (and I'd had 2 pneumonia vaccines within 2 1/2 years). These results have been consistent over the course of at least 3 studies in the Ig's and subsets and compliments and challenge tests. I have an Infectious Disease doctor who treats me for osteomyelitis (one organism is usually only seen in severly immunocompromised people--i.e. HIV, TB, chemo patients, cancers) which led him to explore deeper into my immune system. He told me I needed Ig but since I had been referred by a hemeoncologist I had to see to his collegue (immunologist/allergist/pulmon), she reviewed tests, said same thing, clearly I needed this (ran more tests with more of same results). And she set things in motion. My ID doc had got it set up after I'd seen this immunologist but I didn't want to use him even tho he's an hour's drive as opposed to 2 hours to university's infusion center, because he doesn't switch patients over to home sub q (maybe he thinks it's too risky, I don't know). But my immunologist plans to switch after 3 mos of IV Ig. I at least want to try it at home as I could do it the time of day/evening that worked best for me and work around appointments I may have. I do produce antibodies, but just not enough to protect me from infection. Unfortunately, they do not have anything they can administer to give me IgA.

Insurance carriers use different criteria for eligibility. In my case, my immunologist talked to my insurance while I was there (I also had called and documented--and had the representative document our conversation). My plan did not require pre-cert for the IV Ig at the infusion center (in-network) and was covered under my major medical. I still have to pay deductibles and co-pays up to my max out of pocket. I am not sure how the home sub-q is considered, but I have it documented that the insurance told me only the Home Health needed pre-certed.

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So it is day 3 now. No adverse side effects, no need for tylenol or benadryl. Did 2 loads of laundry, changed sheets, did work on Council business coming up, updated spread sheet for expenses for taxes--a good day. Fizzled out by afternoon. So am jumping off here and spanking this dust, vacuuming and mopping floors while I have am still feeling good. This morning the vocal cord dysfunction does not seem as bothersome but things may change as I get things stirred up. Have another day at James tomorrow--seeing hemeoncologist for the Delta Granule Storage Pool Deficiency and then speech therapist for the VCD (says she's going to hook me up to heart monitor/pulse ox to check breathing on on stationary bike). I hope she uses recumbent stationary bike as that is what heart specialist told me to use with the dysautonomia. BP has still been hanging around low 90s/low 60s.

Well, I fizzled out after all the dusting and vacuuming and cleaning bathrooms. I did have to stop once (stooping, bending, reaching sent by BP south). By around 1:15, I called it done. Hoping to tackle my floors on Fri. But I look at this as huge accomplishment (even though I didn't get it all done). Got sudden surge of fatigue and just had to sleep and rest.

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I am so happy to hear how well this is working out for you so far!!!!! Pray Day 4 is just as successful and you can continue on this road to recovery! It also gives so many others hope that maybe there is an answer for many with this chronic condition! I've been keeping you in my thoughts!!!

I can't believe how much you are getting done throughout the day! That is amazing. I am glad to hear that you are stopping and resting when you need to as well. How accomplished you must feel to get those things done. I can't even imagine. I can't even stand for more than 1 min. without syncope. Just make sure you don't overdo it and take time to do some fun things to!!!!!! You've handled this great and deserve it!

Please keep us posted. I really enjoy reading your progress and success, especially after the complete epic failure of my IVIG attempt. It gives me hope!!!!!

Jen

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So I have felt nothing more than a little sniffles later in week. And immunologist got approval to switch to home sub q Ig (after my third IV transfusion). Insurance denied at first but immunologist sent off appeal letter this morning and it was approved by this afternoon. I cannot help but wonder what life would have been like had this immunodeficiency been pursued/found years ago. But am thankful to have insight to take labs and seek second opinion so to get to do in home setting and health care coverage with pharmaceutical benefits.

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Glad everything is working out! Are you seeing a doctor in the south?

I see Dr. Charity Fox at James Cancer Center at (OSU--Ohio) and Dr. Richard Groger (Kettering, OH). The later doesn't switch you over to sub-q and infuses in 2 hours. I felt more comfortable with second opinion of the first mentioned who transfuses first 3, titrating rate slowly and if tolerated, switching over to home sub q.

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Why did you need it? My IgG test was low. Did your insurance cover it? Hope it works!

I have PIDD/CVID, my IgG total is ok but the subclasses are low IgG 2, IgG3, IgA, T cell count is a little low, T helper cell count is low, and I do not respond by making antibodies to pnuemonia vaccine challenge (and I'd had 2 pneumonia vaccines within 2 1/2 years). These results have been consistent over the course of at least 3 studies in the Ig's and subsets and compliments and challenge tests. I have an Infectious Disease doctor who treats me for osteomyelitis (one organism is usually only seen in severly immunocompromised people--i.e. HIV, TB, chemo patients, cancers) which led him to explore deeper into my immune system. He told me I needed Ig but since I had been referred by a hemeoncologist I had to see to his collegue (immunologist/allergist/pulmon), she reviewed tests, said same thing, clearly I needed this (ran more tests with more of same results). And she set things in motion. My ID doc had got it set up after I'd seen this immunologist but I didn't want to use him even tho he's an hour's drive as opposed to 2 hours to university's infusion center, because he doesn't switch patients over to home sub q (maybe he thinks it's too risky, I don't know). But my immunologist plans to switch after 3 mos of IV Ig. I at least want to try it at home as I could do it the time of day/evening that worked best for me and work around appointments I may have. I do produce antibodies, but just not enough to protect me from infection. Unfortunately, they do not have anything they can administer to give me IgA.

Insurance carriers use different criteria for eligibility. In my case, my immunologist talked to my insurance while I was there (I also had called and documented--and had the representative document our conversation). My plan did not require pre-cert for the IV Ig at the infusion center (in-network) and was covered under my major medical. I still have to pay deductibles and co-pays up to my max out of pocket. I am not sure how the home sub-q is considered, but I have it documented that the insurance told me only the Home Health needed pre-certed.

I think I have the same thing. I had staph last week and low IgG now they are testing me for the vaccines..

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RichGotPOTS,

I hope you get some answers (but hope you don't have to do the gamma globulin--unless the frequency/severity of your infections is affecting the quality of your life). Seems I bounce from bad infection to pronounced dysautonomia. Either one can wipe me out. After I spent all those hours being transfused with the vial of antibodies, another doctor drew 10 tubes of blood 3 days later (taking antibodies with it). Best wishes.

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RichGotPOTS,

I hope you get some answers (but hope you don't have to do the gamma globulin--unless the frequency/severity of your infections is affecting the quality of your life). Seems I bounce from bad infection to pronounced dysautonomia. Either one can wipe me out. After I spent all those hours being transfused with the vial of antibodies, another doctor drew 10 tubes of blood 3 days later (taking antibodies with it). Best wishes.

Even if I do I'm not sure I'd do it because of fear of rejecting it and having my breathing issues :(

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