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Well went to see Dr M at UPMC. I first must say that I have never been to an office that was more organized and friendly. I was told my appt would be 3 or 4 hours long, so I figured I would have a lot of ?down? time where I would be able to read. Boy was I wrong. There was not one min. of those 4 hours that there was not a doctor in the room with me!! I truly loved Dr. M. he kinda reminded me of a cross between Mr. Magoo and my grandfather. He and many of his associates were so thorough with going over my medical history and the physical exam. Dr M. concluded I have some very rare autoimmune disease called antisynthetase syndrome with acute ILD (lung disease) (had him write it down cause I cant pronounce it much less spell it) So I said to him ?that means I don?t have Scleroderma???!!!!? He said ?no, you have Scleroderma but that disease is the least of your concerns now. I have this Antisynthetase with acute ILD, Scleroderma, Sjogren?s, and Dermatomyositis. Dr. M called in several of his associates to show them what a cat scan of lungs looked like with this disease as well as the scaly, thick skin which I have on elbows, feet, knuckles, and starting to develop on my forehead.
He then had several tubes of blood drawn to send to the research lab for ?unconventional? tests. He said they would be doing a complete genetic test on my blood and dna. He said that I would not be following up with him (which was disappointing as I really like him) But that I would be seeing a Dr. O. who specializes in this Antisynthetase syndrome and that treatment will have to be fast and aggressive. There is no cure for this and treatments do not have a good prognosis when acute lung disease is involved.
There is some kind of board meeting held once a month and he asked if he could keep all my CT Scan and PFT tests, as he wants to present my case to this board. They meet this Friday and he will contact me after presenting my case to this board committee.
Treatments consist of high doses of prednisone, cyclophospamide, azathioprine, and cyclosporine. I really have no clue what this disease is or what it is doing to my body exactly yet. All I know for sure is like many other autoimmune diseases it is attacking my body aggressively and relentlessly.
I think I could handle ONE diagnosis but 4 is a bit much for me to wrap my mind around right now. I am totally exhausted and hurting pretty bad right now from 3 hour drive down and 2
You are in all our prayers, I am sure. Be strong and we'll all pull together to send you health in our prayers.
J.
Wow. I mean really…wow. I'm so sorry about your diagnoses. We're here for you anytime you need to talk, and hoping for a good prognosis. I've always said that I would not recommend prednisone unless there were life threatening symptoms involved, but I think you qualify. I'm glad you have good doctors, it sounds like you've got their attention. Lots of hugs,
linda
I am sorry to hear that Terri, you must be feeling quite overwhelmed as well as exhausted. I know there will be people on this Board with SD and related conditions who will be able to provide you with helpful information, resources and support. Hang in there! Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Terri,
I am so sorry you have so much to deal with right now. It sounds like you are in good and knowledgeable hands. We will pray that is the case, that answers will come, and that you will feel our love and prayers for you as you go through this process of finding the right treatments. Nothing is impossible. Nothing about illness is written in stone. Our bodies were made to heal. As we all wait with you to learn more about your treatment, know that you are not alone. God never leaves us, nor forsakes us.
AF
Hi Terri,
I will pray for you too!
Some of us here have multiple diseases going on. The AP can help most of us and maybe it can for you too, but I would jump in with Clindo I.V.'s for five days in a row and then once a week there after along with Minocin and Zithromax. Its just my opinion. Much of the information that I read matches what I live with.
A Big Hug to you!
Diane/WI
Good luck Terri. Please keep us posted of how things are going.
It's always a good start to know what you are dealing with!
Em
http://en.wikipedia.org/wiki/Cyclophosphamide
http://en.wikipedia.org/wiki/Azathioprine
http://en.wikipedia.org/wiki/CyclosporineTerri, personally, I would run away from that treatment as fast as I could. Your life depends on it. Not a single one of those medicines is an antibiotic
Superperro… How I have NOT agreed to this treatment by any means!! That was the treatment recommended. I am still trying to take it all in. Once I can grasp all this I will persue a suitable treatment.
Thank you all for your prayers. I didnt sleep a wink last night. My mind was just racing, going over and over in my mind what all I was told yesterday.
When I was explaining to my family what the doctor said and that the dark, thick, scaly skin on my elbows was developing on my forehead one of my daughters asked me if my face was gonna end up looking like my elbows. WOW that was a tough question to ponder on myself.
I did forget to mention that I have to take a swollow test as well. And it felt like I was signing papers for a mortgage when I signed the consent for the “unconventional” genetic testing LOL.
I hope that maybe there are other people on here that know what this disease is and have treatment success stories. I did try to search internet for it but there just was not much info at all on it. The doctor did tell me that I wouldnt find much on this disease as its very rare.
Thank you again for all your thoughts and prayers
Hugssss
Terri
Terri,
I am so sorry to hear your diagnosis. I pray for you every day I hope there is a treatment which will fit into your condition. Wow, I am speechless. Please feel free to write to us, to vent, and we are here for you.
I could not sleep for over a month after I was dx with pulmonary fibrosis. It's very hard to understand why this happened to us. Please hang in tough there.
Meanwhile, you may want to do more research on those medicine the doctors want to put you on.
Please keep us posted!
JB
Terri,
Sorry to hear of your diagnosis – although not like yours, many people on this board are dealing with multiple, overlapping illnesses. I assume since you are being treated at UPMC you are not going the AP route? I would investigate the meds you mentioned and see the risks and side effects involved. Good luck to you.
Goodwife……. I havent agreed to any form of treatment yet. I am still trying to get a grasp of everything from yesterday. I plan on checking into AP as a treatment, if it is a option for this I will persue it. When I learn more about this disease I will contact AP doctors and see if that treatment will possibly help.
I am also aware that many people on here have multiple overlapping diseases.
Hugssss
Terri
Terri,
I would get copies of all the info from your docs at UPMC regarding symptoms, diagnosis and test results, etc. and all the info you can find on the recommended meds, and weigh which options you have. If you are even considering AP, I would contact Dr S in Iowa. He would probably be the best person to talk to regarding if AP could successfully treat your condition. Even if you were not able to make the trip to Iowa, a good doc can work with him to determine a protocol you can follow. I do know that past posters to this board who were very seriously ill and given NO hope at all have made a practically full recovery on AP. I know I've shared my concerns with you before about UPMC – I think that their approach, like other docs, is to treat the symptoms, not the cause – I feel that for the short time my hubby went there, he was looked at more like a guinea pig than a human being that needed help. My prayers are with you that you find the right path to take to treat your condition successfully.
Terri,
So very sorry to hear of your diagnosis. It would be absolutely overwhelming to hear you have so many diseases within you. A lot of people who are facing an advanced disease process/aggressive disease not only do Ap but some of the other conventional med's as well, certainly until the AP takes hold. As AP does not work overnight and you have advanced ILD you should probably do conventional med's to do whatever you can right now to stall the disease while you wait for the AP to do it's work. You can't fool around with advanced ILD. We're hear for you always, feel free to vent, we can take it and you need somewhere where you can go and be understood and supported through this. Get yourself an excellent AP doc if you don't already have one, if you explain your situation they will probably see you quite quickly. I would at least start some form of immunosupressant as well as ILD med's and of course get started on an aggressive plan of AP (ie. reg. IV's etc.). You're in my thoughts and prayers. Take care of yourself and you're not alone.
Hugs,
Steph
Terri,
Please remember that your docs don't know what causes your disease. They describe it as idiopathic, unknown cause. That means that the diagnosis or in your case your diagnoses are really just names for collection of symptoms. That is, the docs are just collecting symptoms into boxes. The meds aren't all that unusual to this cohort. The Prednisone is intended to suppress your immune system and the other meds treat specific symptoms as needed. I'm sorry that doc bombarded you with such a grim prognosis, but I would take heart that your disease isn't terribly different than the others in this cohort except in degree. That is you may be sicker (or not) than some of the cohort here, but your diseases are still very likely to respond to Dr. Brown's antibiotics just as so many of us have blessedly responded here. Your doc is clearly excited about an unusual presentation. It is as if he has discovered a new butterfly for his collection and to show to his colleagues. But of course it is a little more personal for you and your family and for us. Of all the meds that doc is recommending, the prednisone will probably offer the most immediate relief but will probably also be the most damaging and life threatening in the long term if what you have turns out to be a profound, intra-phagocytotic infection of mycoplasma like bacteria.
Your head must be swimming. It is a lot to take in. Good luck.
-john
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