Please help me! My Asthma is out of control!

[marsbars]

I have a history of steroid dependent asthma, I have been recieving   125mg of medrol 3 times a day via PICC line.  I got an infection in my PICC that almost killed me, so they will not put more lines in (Ive had 3)  Im trying to make it on 320mg of Medrol orally, and Im also on another anti inflamitory.  Im being treated at the Firestone institute in Hamilton Ontario.  When going in yesterday for a stutum induction and blood work, they found my inflimation higher then ever.  My eosiniphilic count is usually around 7-8.3, but yesterday was 37, Im not sure how bad that is. He also said the inflimation has gone into my blood.  FEV was .9 about 13% predicted.  I still have attacks where I honestly feel like Im going to die. Im in the hospital more then out.  I feel like they have done everything they can here, but from what I have heard they are the best in Canada.  Should I be seeking other help? are there alternitives to Medrol? my side effects are really bad. Im starting to feel like giving up, but Im only 21, there has to be away of gaining control of my asthma! Any help to so much appreciated!
My O2 was 85% at rest

[National Jewish]

This is obviously a very severe and complicated problem.  It can only be addressed in an institution that assesses patients that are similar to you.  I would highly recommend that you consider coming to National Jewish Medical and Research Center in Denver.  It may be that you have significant steroid resistance that is preventing your steroids from having the desired result.  It may be that there are other complicating circumstances that need to be found and addressed.  It is easy to understand your frustrations and fears.  Trying to find help that is credible is your next alternative.

[bronchsman]

IF you don't see a pulmonologist you need to.  Eliminate your triggers if you can.  Ask about meds like Spiriva, Advair and other bronchodilators/inhaled corticosteroids.  Look also into reflux disease.

[marsbars]

Thanks for your comment.  I see a respritory specialist, hes suppose to be the best.  I have been on Advair and all of those before, with no help.  My doc said my inflimation is too high for them(advair, etc) to help.  They have be on pills for acid reflux, but he said that how bad my breathing is reflexs my inflimation counts. Im better on prendisone, but I cant be on it at this large dose forever, I started shots on Thursday, getting 120mg IM, and am still on the oral Medrol 320mg.  Anymore help is appreciated!

[thepride103]

My brother was sick for a long time with his asthma--nothing seemed to help.  Finally a pulmonary doctor diagnosed him with a fungus in his lungs.  He had his lungs washed out and it helped him tremendously.  Have you been checked for this?  Good Luck.

[CINDY4]

I am so sorry to hear of the severe problmes you are having.  I read in one of your previous posts that drs thought you may have hypereosinophilic syndrome.  I think that is a very likely diagnosis.  Your counts are very high, normal eosinophil counts are 0-5%, and up to 8% in an asthmatic.  My 10 yr old daughter has a hypereosinophilic syndrome.  They think she has Churg-Strauss.  She first was found to have eosinophilc pneumonia, then we found high eosinophil counts in her blood and other organs too. When she was diagnosed with eosinophilic pneumonia, she also kept requireing higher and higher amounts of prednisone.  They eventually had her on 750mg IV steroids 3 times a month.  She would get better for a while but never totally.  That is when we started looking into more things and found the disease is all over.  Many people with this disease also need a chemo drug to knock it out, that may be why you are not getting better.  I am sure all the eosinophils in your lungs are why your asthma is so severe, and that it is so impossible to control.  They took a lung biopsy of my daughter, and the drs said they had not seen such excessive eosinophils except at autopsy.  They told me her lungs looked like what they see when someone dies from a fatal asthma attack.  They did not know how she was functioning with all she had in her lungs.  They did a bronch and she had 36% eosinophils in her lavage fluid. I bet if they took fluid from your lungs your eos counts would be sky high.  Also you mentioned you had a rash.  A rash goes along with Churg-Strauss.  The rash is vasculitis, where your blood vessels themselves become inflamed.  Press on the rash and see if it fades to your skin color or if it stays red.  That fading is called blanching and a rash that does not blanch many times is vasculitis, where the blood is at the surface of your skin. You must see a dr familiar with this disease, who knows the treatment for it.  Even if you have to come to the USA(aren't you in Canada).  I saw you mentioned your drs want to try the anti IL-5 drug.  I have had contact with some who have been in the drug trials for it, and they said it was like a miracle for them.  It completely controlled things, and their eosinophil counts dropped to 0.  We have gone all over the country to experts in these diseases, and her drs feel this drug is the best thing out there right now for these diseases.  I would try it.  It is not approved yet, so you woulkd have to be in a drug trial, you probably will not be able to get it consistantly for another 2-3 years when they hope to have it approved.  I have done  a lot of research on this and am very familar with all you are going through.  PLease let me know if your have any questions, or if I can help in any way.  Take care.

Cindy

[marsbars]

Cindy.  Thanks so much for you info and your concern.  Im getting so frustrated with doctors!  I have run into a bunch of problems this week, with little help from my doctors if at all.They still have not confirmed the hyperesoniohilic sydrom because they say they need to do biopsys and my breathing is not good enough for that yet.  At present Im on 200mg Medrol(IM) shots and 320mg of oral prendisone.  IM STILL WHEEZING!  It makes me so frustrated!  I  think my rash is just from the steroids, that what it looks like now, but the other problems Im having with prendisone is with my stomache.  Im not sure if your daughter had this problems but I have not been able to eat because of pain in my stomach and now I have very black stool. somthing is not right.  I also had my BP drop so low I could not sit up on the weekend, so on goes the battle.  I sorry about the problems you have had with your daughter, Im hoping once I get better they will be able to do biopsys of my lungs and see whats really going on.  Im hoping for this med to come soon the Anti-Il-5 is my only hope! thanks again
Mary

[marsbars]

What is the Chemo drugs that is usually needed?

[CINDY4]

The chemo drugs they use for this are cytoxan, methotrexate, and imuran, hydroxyurea, infteron alpha.  These are a a few that are used.  Many people have much better control when the chemo drugs are added.  Your drs need to get together and diagnose you before you are well enough for a biopsy, your lungs may never get in good enough shape for that.  An open lung biopsy is a big deal especially for you it would be very risky.  Have they done CT's of your lungs or a bronchoscopy with lavage?  They could do these things and it would give them a much better picture of what is going on.  If you would like to e-mail me my e-mail is ***@****, so we don't have to talk through this board.Thee diseases are so very hard to diagnose and then treat.  The doctors just don't know anything about them. I would love to know more about what all has been going on with you, let me know what all lead up to this if you have time.  Take care.

Cindy

[harold turner]

I have asthma and hes last nov my eosinophilc levels were 85 and I was close to death I have been on prednisone for over a year and any time they try to take me off it my levels shoot right back up, I realy need to find a doctor who knows how to treat this disease, as it is starting to get the best of me, this disease also did a lot of damage to my heart, and nervouse system. I am allways getting chest pain, shake most of the time I have to take valume daily just to control the shaking and this dosnt allways work. If any one can be of any help I would realy appreciate it I live in upstate New York and have not been able to find a doctor with any expertise, even my polmoligist are not sure how to treat, and I have been to alot of them they say the same thing I am the only one they have ever had with this desease . like I said any help I could get would be great.                                                                                                Thanks
                                  Harold J. Turner

[marsbars]

The eosiniphils that you have are they in your blood or in your sputum?  If they are in your blood, its probably more hyperesiniphilic sydrome.  What have you actually be diagnosed with?  there are other drugs that you should be trying before you take prendisone.  How much prendisone are you on?  If you want to email me we could talk ***@****