Had my 4 hour appt with Autoimmune Dr today

[linda]

Please don't be hatin on me for what I'm about to write:

I'm with Steph 110% on this. I think that AP is a good choice down the road, but for now I worry what a herx would do to Terri. She doesn't need to exascerbate any of her symptoms right now. Dr. Brown used prednisone on his patients to control inflammatiom, but Terri's inflammation can and will cause serious permanent damage to vital organs if not addressed immediately. I liken it to trying to put out a 4 alarm fire with garden hoses-yes, they will cause less damage than the big hoses the fire dept uses, and they will eventually put out the fire; but the fire will be allowed to burn for a long time and cause a lot of damage, maybe even destroy the building. As we have often said, AP works, but it is glacial; her disease is very aggressive and dangerous, and needs to be treated aggressively. I have faith in AP, but I believe this is a rare case where it is just not enough for this dx.

You all know my feelings about prednisone, but if I were in Terri's shoes I would take it, along with any other heavy hitters she is prescribed. My research on her diagnosis was fairly alarming. Its like SD that has mutated into monster SD. Yes, she's going to be the show and tell patient because this is such a rare AI dx. I think that will happen no matter what set of doctors she sees. But it will give her progress a lot of exposure in the medical field- I can see the papers that are going to be written about her already- and that in turn will be very motivational for her doctors to make sure she does well. If she don't look good, they don't look good.

I don't want to stir up a lot of debate over this subject and distract from the support that Terri needs. I only feel that there are a few rare cases where the battle is just too big to be fought by AP alone.

linda

[A Friend]

Note to John McD… and to Terri,

John, what do you think of Terri's seeking information and learning more about MP to use in her decision making?  Also, because of Terri's pulmonary fibrosis (and everything else, of course) would it not be a good idea to bounce all of Terri's doctors commentary and plans for treatment off one of the Marshall Protocol (very knowledgeable) moderators?  I'm thinking they just might discuss her case with Dr. TM. 

When I'm the patient myself, I have an insatiable desire to know ALL OF MY OPTIONS AND EVERYTHING I CAN ABOUT THEM!  Almost without fail, it has been some of the “outside the box” information that has helped me the most … especially since most mainstream doctors either have not heard or read, or do not choose to hear or read, about treatments such as these.  I'll bet Terri would also like to know about all of her options, too. 

John, I consider you my/our expert on MP on this Board — or at the very least, the person who can get answers for us. 

Hope all is well with you, John.  And thanks for your “ear”.

AF

[linda]

It's great that you are trying to get more information for Terri, but we need to understand that she doesn't have the luxury of time right now-she is facing a potentially fatal illness and needs to begin treatment immediately. I think it's a wonderful idea and you should definitely find all you can for her, but I don't think she should delay starting treatment.

[A Friend]

Linda,

Your concern is coming from a good place.  Many of us have been around here for a long time and know that beginning AP (most any way the doctor does it) “can” be helpful.  But it is never a good idea to “lock your brain” into not gathering potentially useful information if after an acceptable length of time, more help is needed. 

Finding other options for possible use  “can be”  reassuring — or is to me.  Dr. Brown's treatments actually formed the basis of Dr. TM's beginnings of MP, and he researched and found “modifications” to AP that would reach the hidden organisms (all this my verbage, not TM's) in sarcoidosis — and the first known successful treatment of this disease occurred.  Turns out this same MP treatment “can be” very helpful with other diagnoses. 

So, “learning about MP“ (in my book) is certainly not contraindicated for treatment on down the road, IF INDICATED.  Again, my post was about gaining knowledge.  My motto for years (after I'd seen many instances of knowledge gained months or years ago becoming very important for whatever was going on with me) has been:  No Knowledge is ever wasted!  Knowledge can build on knowledge.  Somewhere, sometime, for someone — if not for ourselves — it MAY become important. 

AF  

PS  In a case like Terri's — am wondering if her new physician is aware of MP and the “modifications” that TM has found in his research.  I want Terri protected, first and foremost; but I also want for Terri, and for each of you, and for myself… the very best and appropriate known treatments — and to first do no harm.  The rapid progression of Terri's several diagnoses is scary.  I'm not knowledgeable enough to even guess what is best for her.  But, I'm sure hoping that her doctors will consider all the options at their disposal to help halt the progression of all the problems going on in her body.  Prayers are with you, Terri. 
~ AF

[Parisa]

One other option is IVIG (intravenous gamma globulin).  My husband has dermatomyositis and interstitial lung disease.  He gets the IVIG two days a month and has done three months of it so far.  The IVIG is helping to turn things around especially the muscle pain and weakness. 

Sometimes the insurance companies want you to have done a trial period of cytoxan or methotrexate because that route is much less expensive for them.  However, there are a few people at http://www.myositissupportgroup.org that were so bad they were put on it right away.  Also, I believe one person was still in her childbearing years and was able to opt out because they said she wanted to be able to have children in the future. 

 

My husband did 5 months of Cytoxan and it didn't do a thing for his lungs or his muscles.  He's also done prednisone and other than causing a three month pneumonia requiring 24 hour oxgyen that hasn't helped either.  The issue is getting at the inflammation fast enough so that eventually the low dose antibiotics can kick in.  One way might be the IV Clindamycin.

Currently, we play both sides of the fence.  We use the rheumatologist to get what we want:  IVIG and then continue with our Lyme specialist to work at getting at the cause of his disease.  There is research showing a connection between dermatomyositis and Lyme disease.

 

I understand your fears.  My husband and I have lived with this disease for two and a half years and understand that it is a very serious condition that has the possibility of killing him if  he doesn't get the inflammation in the lungs under control.  My dislike of the methotrexate, cytoxan approach is there is no real proof showing that it works.  Also, methotrexate and cytoxan can actually cause interstitial lung disease. 

If you decide to do the methotrexate route, don't feel that you can't ever do AP.  That door is always open here.

Something that we feel has helped my husband's lungs is a supplement called NAC (n acetyl cysteine).  It will help clear out the mucus in the lungs.

[Parisa]

Okay, I looked up antisynthetase syndrome and found the following.  Looks to me like another way of saying mixed connective tissue disease with lung involvement.  Please note the part where it says that efficacy of treatment with methotrexate has not been substantiated.  I would really push your doctors for IVIG.  If they've never prescribed IVIG, then tell them they need to get on the bandwagon.  Another way would be to post at http://www.myositissupportgroup.org and ask the people that are getting IVIG who they are seeing.

 

http://www.orpha.net/static/GB/antisynthetase_syndrome.html

 

Summary
The antisynthetase syndrome is a rare, chronic autoimmune disease of unknown etiology. The syndrome is considered as a subgroup of the idiopathic inflammatory muscle diseases. The hallmark of the disorder is the presence of serum autoantibodies which recognize the aminoacyl-tRNA synthetases, a family of intracytoplasmic enzymes which play a vital role in protein synthesis. Prevalence in the general population remains unknown. Patients with antisynthetase syndrome have a characteristic clinical picture consisting of myositis and/or interstitial lung disease and/or chronic articular involvement. Raynaud's phenomenon is frequently observed. The severity and type of pulmonary involvement determines the outcome of the disease. Prednisone usually associated with steroid sparing agents such as azathioprine or methotrexate is used for the treatment of myositis, but its efficacy has not been substantiated in double-blind trials. In the case of severe pulmonary involvement the use of cyclophosphamide given in I.V. pulses is recommended. *Author: A.G. Tzioufas (November 2001)*.

[JBJBJB]

Parisa,

I would like to know more about IVIG (intravenous gamma globulin). If this will take a lot of space, please send me a PM. I sent you a PM.

Many thanks!

JB

[linda]

I agree with you AF, the more knowledge we have, the better equipped we are to fight the disease. I'm sorry if there was something in my post that made you think I felt otherwise. I should have left out the part about Terri not waiting to begin treatment, as you did not discuss that in your post. I found a few articles on antisynthetase last night in my own search for knowledge, and from what I read this disease can go south very quickly. For this reason I would go ahead with an aggressive therapy while searching out other options. Our health care system has become increasingly slower- I've been waiting about 5 weeks to find out if a mass on my liver is benign or cancerous, simply because of the paperwork involved in getting tests scheduled and then the results reported to the doctor. And if her kidneys are involved, any course of therapy is going to have to be closely monitered, even IV abx (and she would need the aggressiveness of IV treatment) could be harmful. Sometimes the symptoms and the cause need to be treated simultaneously, even Dr. Brown admitted that.

It's not an uncommon dilemma and one that I've heard often on this board; do I treat the severe inflammation with strong but potentially harmful meds while treating the infection with abx, or do I wait and only take abx and hope that I don't sustain permanent joint or systemic damage? In Terri's case the damage could very well be life threatening, and yes, that is scary!

I think we're closer in our philosophy than you might think. I do believe in the infectious component of these diseases, and I do believe that AP/MP works. It's only the slowness of our health care system and the slowness of improvement with AP/MP that have me concerned in this case, when life threatenening damage is imminent. It's a gamble either way-she could face dangerous side effects from aggressive treatment but she could also face dangerous systemic damage from just going the slow route with AP. Why not use them together?; she could drop the aggressive treament when the abx start working-this approach would decrease the chance of side effects from aggressive treatment as well as decrease the chance of permanent damage while waiting for the abx to kick in.

Something else to consider is that this disease is so rare that most rheumies may see only one case in their entire career. I'm not sure that anyone with this disease has ever been treated with abx, so there is no set protocol for which abx works best, which dosing schedule works best, etc. As we all know, it takes time for those of us with common AI dx to figure these things out, I imagine it would be even more difficult with no baseline protocol to even begin with.

We both believe in AP/MP, I think where we're differing is in what we're afraid will happen; you're more concerned about side effects of aggressive treatment, I'm more concerned about the time involved in AP/MP therapy. Both are valid concerns that I'm sure her doctors share as well. As for knowledge, we both want to know more about this disease and treatment options, and I know Terri does also.  I did not say that any research into MP or any other therapy should not continue, only that Terri should begin treating the symptoms while waiting for the information you find. I also believe in the 'first do no harm' philosophy, but harm can come from inaction as well. I have no MP connections, but I'm glad we have people on this board who do- all treatment options should be investigated. So as far as I'm concerned, we're on the same page.

linda

[Terri9967]

Ok……  I want to thank everyone for their support and advice.  This should not turn into a debate of who's treatment is right and who's is wrong.  I am the type of person that arms herself with knowledge.  That will be what I use to fight this disease. 

I have been on Methotrexate in past and it did work wonderful, but my body could not handle the side effects and I had to be taken off it.  I was also on prednisone and that did not help me at all. 

I have every intention of contacting Dr S in Iowa.  I would like to find more info on MP as well.

I do however believe that having a open mind to ALL options is the key to finding a treatment that works.  Everyone's body fights diseases differently, and all options for treatment whether its inside the box or outside the box as long as the treatment works is all that matters. 

I will NOT give up fighting!  If I am given that chance to take part in research treatments I will grab it.  As research and experimental treatments are how all cures for diseases are found in the first place.  And if by me and others taking part in theses “trials” helps someone else not have to go through all the stress of trying to understand this disease and help them make the decision of which treatment is best, then it will be all worth wild for me.  As we all know, stress is a significant factor in triggering symptoms, my feelings are that maybe by me taking part in experimental treatments will help someone else not have as much stress in their search.

Hugssssss

Terri

 

[Terri9967]

Antisynthetase Syndrome ANA levels can or may not be high, Anti Jo-1 levels are high.  This disease can but not always have muscle, skin, lungs effected.  Scleroderma the skin is thick with shiny appearance, with Antisynthetase skin is thick, dark and very scaly, also called “mechanics hands” where it peels. 

I am trying to learn what I can about this disease but there is little information online about it. 

Hugssss

Terri 

 

[Nan – RA]

{{{{{{{{{{Terri}}}}}}}}}}

God bless you and lead you to the right decisions Terri.  There is power in prayer…. and many of us will keep you there.

Nan

 

[Parisa]

JB,

I will respond to your question here.  To qualify for IVIG isn't easy.  The insurance companies want to see certain things: dermatomyositis that doesn't respond to cortisone and/or methotrexate or someone who can't take those drugs or is in an acute condition.  Scleroderma sometimes qualifies as do certain neuropathies. 

As far as pulmonary fibrosis, I haven't seen any studies on the efficacy of IVIG on it.  The sampling of people on IVIG at the myositis site that also have lung involvement is small.  I do know that the IVIG is helping the pain and muscle wasting my husband was having.  He also is getting more energy.  I can tell that it is turning things around for him.  Next lung CT scan is in June and I can report back then. 

[JBJBJB]

Parisa,

I really appreciate your reply. I did some quick search and it seems to be worth investigating. I will keep researching on this topic. Please keep me posted on his lung improvement report. I heard photopheresis treatment can also improve lung function, but it's almost impossible to get insurance pay for that. So far I got no support from three of my doctors.

Thanks,

JB

[marg]

Hello Terri, How hard this all must be for you. Very scary. Take John Mcdonald's comments seriously, he puts your symptoms into perspective.

It's true that it is good to at least know what you're fighting and when you feel calmer ( which will happen in a bit, give yourself a little time) you will decide how to fight them.

I will be praying for you and I hope you will let us know how things go.

[richie]

Hi

The doctor you saw is a fabulous doctor who is well known within scleroderma circles –while it is a bit troubling because he doesnt use an antibiotic approach for treating scleroderma –he is highly respected and of course Pittsburg is a wonderful med center –Sound like you are in real good hands !!!!!!!!!!!!!

Richie

[Author]

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