Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 In a message dated 3/24/2004 1:21:29 PM Eastern Standard Time, Firstwifek@... writes: This year, in October I got my first ever pneumonia shot. Hi Kaye, thanks for the encouragement and the information about the after effects of pneumonia. I am going to get one of those pneumonia shots, don't want to go through this again. Thanks again, Matt. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 In a message dated 3/24/2004 10:43:43 PM Eastern Standard Time, wakey81@... writes: my brother had pneumonia and pleuresy, and needed another course of antibiotics to finish it off Thanks Helen, I can attest to the fact that the first bout was bad but bearable. The second time it came back a few weeks later, the pneumonia was or is ten times worse. I coughed so much that nothing came up but blood. I felt like I was drowning. I think everyone on this list should look into the pneumonia vaccine which was mentioned be several other members. I am going to ask for it next fall. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 from Dale, Mom to Katy, CVID, age 19 Sandy, I've never had to deal with pneumonia, so I can't help you there. But, please don't get discouraged about the IVIG not working. It takes many years for those lungs to heal from repeated pneumonias. I'm hoping that the IVIG will help her to respond more quickly with antibiotics and that it has helped her to build stamina enough that this one won't set her back too much. Hang in there! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Macey gets 20 gms every 3 weeks and has had two pneumonias already this winter. IgA coats the lining of the lungs and since there is no IgA boost in IVIG then it doesn't seem to help much there. We've never done a sputum specimen with her pneumonias but do tend to do Vantin or Zithromas, Incentive spirometry (her pneumonias tend to lead to atelectasis). We do breathing treatments and then a three day steroid burst. Once we did a steroid shot of Decadron to avoid the oral burst. Macey has scarring in her right lobe from repeated infection before diagnosis and off and on infections since. She seems to finally be clear enough right now to have her PFT's on the 15th. With that, the last lung CT, her levels and recent history we will then go to the immunologist on the 5th of May to come up with a new treatment plan for her lungs. Ursula - Macey's mom (8, CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Sandy, I just read your post, our prayers go out to you and Riley, we hope she gets better soon. mom to , IgA def, asthma, gerd Pneumonia Hi, My 12yo daughter, Riley, had a chest X-ray yesterday because of sudden exacerbation of asthma/respiratory symptoms with a fever of 102.5. The X-ray showed a rt upper lobe infiltrate. She also had a throat culture for Strep done. The pediatrician started her on Zithromax to cover the pneumonia and/or Strep. This is her fifth confirmed pneumonia in three years - but her first in a year and her first major illness since beginning IVIG in October. I remain hopeful that she will bounce back better than in the past .... BUT I am wondering what is the criteria that would warrant culturing sputum BEFORE starting an antibiotic. She is really sick and had two very rough nights with violent shaking chills and spiking fever in the middle of the night. I am hoping to avoid a hospitilization and I am hopeful she will bounce back. But she got really, really sick, really quickly .... so I want to get my thoughts together before her next IVIG and talk to the Immunologist about culturing, etc. Any thoughts or anyone with similar experiences with some advice?? Thanks. Sandy (Mom to Riley, age 12, antibody deficiency, IVIG, asthma) This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 In a message dated 1/4/05 7:03:36 AM Mountain Standard Time, SSRI medications writes: > The market for acid-suppressive drugs, such as proton pump > inhibitors or H2-receptor antagonists drugs, is worth more than > £7bn > a year. > > It is thought the pneumonia risk is associated with the increase in > stomach bacteria, which is normally killed by the acid. > > Let's not forget that it's all about the money. The more drugs you take, the sicker you will get, and each new treatment is more expensive than the last. Somehow these people think that disrupting the very digestion of your food by killing off the acid, or restricting the acid, is a good thing when it doesn't even make any sense at all except to make the patient sicker so he will require more drugs. " Blind Reason " a novel of pharmaceutical intrigue Think your antidepressant is safe? Think again. It's Unsafe At Any Dose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 Enbrel definitely increases the infections.. I have had the most random infections and they of course took forever to go away.. everything from pneumonia, to stomach flu, to my kidneys bleeding due to a virus that attacked them.. But Enbrel works and that is what is important, but if Caroline keeps on with all those infections you maybe should try another med.. My friend was on Enbrel and they had to take her off because she just kept getting sick.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 alia, well on the positive side at least they know what she has so that they can treat her... and i know how frusterating not being able to taper the pred is; but increasing it for now might just help her to feel better as well as avoid her becomming more ill... i know; it is not what you want to hear... i wish i had something that i could say to " make it better " just know we are here!!! keep us updated on how she is doing ok?? *hugs* > > We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her > birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and > tomorrow morning's that she will be able to have her birthday party. > > We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also > uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there > goes the pred taper! > > We go back next week for a re-check. Hopefully it will clear up by then. > > Alia and Caroline, age 2, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 I was just wondering why they took her off Enbrel, if you don't mind me asking. Was it not working? I hope she feels better for her birthday party! Summer-Gabi 7 poly Alia Pranke <Alia.Pranke@...> wrote: We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 Alia, I hope Caroline is on the mend quickly and that stopping Enbrel doesn't cause too many problems for her. Hugs, Liz Pneumonia We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 Summer, Infections are a really big problem when on the biologics~~ It can be much more difficult to fight them. So when an infection is present Enbrel is stopped. Little Caroline has had quite a few infections since starting Enbrel, so I'm guessing that is why she has been taken off of it indefinitely. Liz (- 13- poly) Re: Pneumonia I was just wondering why they took her off Enbrel, if you don't mind me asking. Was it not working? I hope she feels better for her birthday party! Summer-Gabi 7 poly Alia Pranke <Alia.Pranke@...> wrote: We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 ooohhhh! I was just wondering! My daughter has been on it for about a year. liz smith <liz_smith@...> wrote:Summer, Infections are a really big problem when on the biologics~~ It can be much more difficult to fight them. So when an infection is present Enbrel is stopped. Little Caroline has had quite a few infections since starting Enbrel, so I'm guessing that is why she has been taken off of it indefinitely. Liz (- 13- poly) Re: Pneumonia I was just wondering why they took her off Enbrel, if you don't mind me asking. Was it not working? I hope she feels better for her birthday party! Summer-Gabi 7 poly Alia Pranke <Alia.Pranke@...> wrote: We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 Alia, Poor Caroline,to be sick right before her party.I hope she is feeling better soon and thank goodness for antibiotics. I guess Cyclosporine will be the next step. Your in our thoughts and prayers. Tell Miss C happy birthday from us. Hugs Becki and 6systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 I am so sorry! There is tons of CRAP going around, and you are not the first I have heard with pneumonia. Keep her warm and comfortable this weekend! and Allie ( 8 poly) ________________________________ From: Alia Pranke [mailto:Alia.Pranke@...] Sent: Friday, January 28, 2005 6:18 PM Subject: Pneumonia We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis ________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 So sorry to hear about Miss C. Hope she got to have the party and that the Zithromax is kicking in. and Rob 15 Spondy On Sat, 29 Jan 2005 00:17:42 -0000 " Alia Pranke " <Alia.Pranke@...> writes: We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 Alia, Geez, what a set back. It's nice that the doc is working with you so Caroline can turn 3 with celebration. All my kids had their first real party when they turned 3. How memorable. I hope Caroline feels well enough to have a blast. Stacia and Hunter 8 systemic, iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 --Alia... Im a little behind,, but am sorry to ready of carolines Pneumonia.. that suxs and awful timing too... It sure sound slike Enbrel is not going to be the drug for her (((( What the next on list??? I want to be the 1st to wish Miss Caroline a VERY HAPPY 3rd BIRTHDAY!!!! I hope the zithromax has kicked in by now and shes able to enjoy her birthday party. Please give her a birthday hug from Nick and me... Hugs Helen and (7, systemic) - In , " Alia Pranke " <Alia.Pranke@t...> wrote: > > We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her > birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and > tomorrow morning's that she will be able to have her birthday party. > > We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also > uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there > goes the pred taper! > > We go back next week for a re-check. Hopefully it will clear up by then. > > Alia and Caroline, age 2, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Re: Pneumonia --Alia... Im a little behind,, but am sorry to ready of carolines Pneumonia.. that suxs and awful timing too... It sure sound slike Enbrel is not going to be the drug for her (((( What the next on list??? I want to be the 1st to wish Miss Caroline a VERY HAPPY 3rd BIRTHDAY!!!! I hope the zithromax has kicked in by now and shes able to enjoy her birthday party. Please give her a birthday hug from Nick and me... Hugs Helen and (7, systemic) - In , " Alia Pranke " <Alia.Pranke@t...> wrote: > > We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her > birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and > tomorrow morning's that she will be able to have her birthday party. > > We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also > uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there > goes the pred taper! > > We go back next week for a re-check. Hopefully it will clear up by then. > > Alia and Caroline, age 2, poly and uveitis _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Thanks Helen! It was just so weird. I really didn't think her cold was that bad. I brought her into her pediatrician because I thought she had a possible bladder/urine infection. Turns out she didn't, but when he looked her over he told me she has pneumonia! I was sort of in a state of shock to say the least. I mean, I was prepared to hear she has strep, or she has an ear infection. But pneumonia! No way! She seems to be doing better though. Her cough is getting better. She had a great birthday party on Saturday. Today is her actual birthday so we sang Happy Birthday to her when she woke up. She was all smiles! Yes, Enbrel is out indefinitely. Dr. Akin feels she has just had too many infections since being on Enbrel. Dr. Akin said she is going to start her on cyclosporine next time she sees us (Feb 14th). We upped her prednisone once again (I swear we are NEVER getting off steroids!!) and are also holding the Methotrexate for a few weeks. I'm glad to hear Nick's fevers finally broke. That must be a relief! Thanks for the birthday wishes. I just can't believe that she is 3!!! Alia and Caroline, age 3, poly and uveitis Re: Pneumonia --Alia... Im a little behind,, but am sorry to ready of carolines Pneumonia.. that suxs and awful timing too... It sure sound slike Enbrel is not going to be the drug for her (((( What the next on list??? I want to be the 1st to wish Miss Caroline a VERY HAPPY 3rd BIRTHDAY!!!! I hope the zithromax has kicked in by now and shes able to enjoy her birthday party. Please give her a birthday hug from Nick and me... Hugs Helen and (7, systemic) - In , " Alia Pranke " <Alia.Pranke@t...> wrote: > > We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her > birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and > tomorrow morning's that she will be able to have her birthday party. > > We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also > uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there > goes the pred taper! > > We go back next week for a re-check. Hopefully it will clear up by then. > > Alia and Caroline, age 2, poly and uveitis _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Thanks . She did have a great " Princess Party " . We'll take her back in on Friday to make sure she's recovered! Alia and Caroline, age 3, poly and uveitis Re: Pneumonia So sorry to hear about Miss C. Hope she got to have the party and that the Zithromax is kicking in. and Rob 15 Spondy On Sat, 29 Jan 2005 00:17:42 -0000 " Alia Pranke " <Alia.Pranke@...> writes: We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Liz is correct! Caroline has had at least 5 or 6 infections since starting Enbrel last August. A few too many for her rheumy's comfort level! Alia and Caroline, age 3 ,poly and uveitis Re: Pneumonia I was just wondering why they took her off Enbrel, if you don't mind me asking. Was it not working? I hope she feels better for her birthday party! Summer-Gabi 7 poly Alia Pranke <Alia.Pranke@...> wrote: We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Glad to hear the party went off well. Happy Birthday to Caroline! Three is such a great age. Hope she continues to feel better, Michele Re: Pneumonia --Alia... Im a little behind,, but am sorry to ready of carolines Pneumonia.. that suxs and awful timing too... It sure sound slike Enbrel is not going to be the drug for her (((( What the next on list??? I want to be the 1st to wish Miss Caroline a VERY HAPPY 3rd BIRTHDAY!!!! I hope the zithromax has kicked in by now and shes able to enjoy her birthday party. Please give her a birthday hug from Nick and me... Hugs Helen and (7, systemic) - In , " Alia Pranke " <Alia.Pranke@t...> wrote: > > We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her > birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and > tomorrow morning's that she will be able to have her birthday party. > > We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also > uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there > goes the pred taper! > > We go back next week for a re-check. Hopefully it will clear up by then. > > Alia and Caroline, age 2, poly and uveitis _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Thanks Liz. I appreciate your thoughts. I'm keeping my fingers crossed. It was pretty bad before we started Enbrel and I just can't imagine going back to that. How's handling Remicade? I am going to ask her rheumy about Remicade when we see her. Do you know if it has the same immune-suppressant capabilities that Remicade has?? Alia and Caroline, age 3, poly and uveitis Pneumonia We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Thanks . That's what our pedi. said also. It's kind of funny what happened when I called her rheumy. It took a little while for her to call back. When she did, she was just frazzled. She said she must have been the only ped. rheumy on call in the state because she had been on the phone all day with every clinic, er, dr, office answering questions for all the other rheumy's! She said she knew Dr. Vehe was gone, but she wasn't expecting all the others! I guess the up side is that if Dr. Vehe and Dr. Akin aren't available, hopefully one of the other rheumy's in town will help out! Alia and Caroline, age 3, poly and uveitis Pneumonia We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis ________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Hi Alia Remicade, like Enbrel, does suppress the immune system. Still, it might be worth trying for Caroline. I think the key is to try to stay ahead of things. Because of 's lengthy battle with a sinus infection last year (7 months to get rid of it), I now call the pediatrician the moment things seem " iffy " . Thankfully the pediatrician agrees that's what I should do and has his staff squeeze in even if he's booked solid. is handling the Remicade beautifully! She had her 3rd infusion today (we just got home a few minutes ago) and had no problems with it. Her rheumy is thrilled with the way her joints look and, more importantly, with how feels. He was also quite pleased to see that she has hair growing again and is going to report the possible alopecia/Enbrel connection to the FDA. I hope Caroline had a wonderful birthday!!! Liz Pneumonia We just got back from the doctor and Caroline has Pneumonia! Ugh. And right before her birthday party!! Her ped put her on Zithromax and said if she gets tonight's dose and tomorrow morning's that she will be able to have her birthday party. We also spoke with her rhuemy and she has taken her off Enbrel indefinitely. We are also uppeing her Prednisone and holding Methotrexate for one to two weeks. I guess there goes the pred taper! We go back next week for a re-check. Hopefully it will clear up by then. Alia and Caroline, age 2, poly and uveitis _____ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.