Rheumatoid lung disease

[JBJBJB]

[user=236]Eva Holloway[/user] wrote:

JB

I have interstitial pulmonary fibrosis. My lungs where filled with fluid. Took them four days to drain them.

I had chemo for one year, my rheumy told me it didn't work. Then they put me on Cellcept and Enbrel with lots of Prednison on a daily basis. I look like a overgrown clown with a round face. :sick: 

Eva,

I was told I did not have fibrosis but I did have interstitial lung problem. My lungs also filled with fluid and I got sucked once and was supposed to do it this year again. I also had pneumonia vaccination, but I refused to have flu shot.

I just fired my second opinion pulmonary specialist two days ago. He required me to have CT Scan every 2-3 months. I refused to do it . So I cancelled his appointments.

I was told to take Cytaxon or Cellcept because my lungs were involved. I refused to take these medicine, so I came to the Internet and found Road Back Foundation. After doing many nights research on AP, read up books and talked to people on this board, I went to Iowa to see Dr. S.

It's been 11 month, my lungs have more clouds on the X-ray comparing to Jan 2008. I wrote to Dr. S., he changed my prescription. I also did 5 zithromax IV treatment back in Jan, it worked out really well.

I will do another 10 round of Clindamycin in May. I sure hope Dr. S will help me again.

Thank you, Eva. We can compare notes together :headbang:

JB

 

[Eva Holloway]

Linda,

did your appointment with Dr.K in Lufkin go okay?

Eva

Eva Holloway

[Eva Holloway]

JB,

I have a ct-scan done every six months, the reason is  I had the cytoxen and cellcept and they can cause cancer, so now they covering their butt  (the rheumy and the fired pulmonary) with the ct-scan. I asked Dr.K in Lufkin if I should continue it and she told me I had to because of the cancer problem. I wish I could discontinue it, my lungs have cleared a lot since I started with the Biaxin and Minocin. I had a pulmonary function test done in November and the pulmonary doctor (new) told me that my lung function has inproved a lot. I still have about an one inch strip on the bottom of my lung that has a lot of fibrosis, that will never go away, but the lung can adjust and will expand if you regularly do the breathing exercise.

Keep in touch,

Eva

Eva Holloway

[JBJBJB]

[user=236]Eva Holloway[/user] wrote:

I still have about an one inch strip on the bottom of my lung that has a lot of fibrosis, that will never go away.

Eva,

I also have about one inch “scar tissue” on the bottom of my lungs, too. The doc said it was due to a lot of phlegm buildup down there.

I read several news about frequent CT Scan and cancer. 2% of the cancer patients are due to frequent CT Scan. We are really in a catch 22 situation.

To be honest with you, all my doctors said my case is “VERY COMPLICATED”. It mimics the pulmonary fibrosis but they are not. I do have Raynaud's but I do not have scleroderma.

JB

😯

[linda]

Hi Eva,

My appt was interesting. Dr. K put me on minocin 50 mg MWF and Flagyl 250 mg MWF. She gave me her diet and also told me that inositol and taurine would help with the diet and the metabolic disorder caused by the prednisone. However, she also told me that she had only marginal success with patients that had been on prednisone long term, and that it would take 2-3 yrs for me to start feeling better. She said most of her patients like me quit because they couldn't handle weaning off the prednisone and starting AP at the same time. I almost felt like she was trying to talk me out of it. She said the IV abx didn't really work better than oral abx, and even tho I had told her about my gut issues she still wanted to do the oral abx. Dr. S in Iowa states in his article found here at this website that he has found IVs work faster and have more long term success. I'll talk to her about this again when I see her in 6 wks. She said thaty she had a hard time with the insurance companies over it the cost of the IVs. I felt a little dejected after the appt, but I'm over it now. It wasn't like I didn't already know what she was telling me, that wasn't the disappointment; it was more that she didn't offer much hope. I think she was just being honest and realistic with me. Anyway, I've been on the abx for a week and just this morning I woke up and felt yucky. Fingers and hands are swollen and my back is more painful than usual. I don't know if it's too early for a herx, but the symptoms came on pretty fast, about 24 hrs after my 3rd dose of abx.

I'm not sure I agree about your prognosis for your lungs. My lungs were very scarred from severe childhood asthma and several battles with pneumonia. When I was about 12y/o I started running on an AAU track team with very tough track practices. My mother thought I would kill myself, but I didn't. That is when I actually started to get some control over my symptoms. My allergist was all for it. My parents had been told that my lungs would never heal, but after running for about 2 yrs, I got pneumonia again. The x-rays showed the infection, but also a big surprise – no scar tissue. It had completely healed. I still had problems until I turned 19 and moved out of my parents house (they both smoked, in the house, as did my older sister), but they were never as bad as when I was younger. I think there is a chance that your lungs could heal completely. The one thing I have learned to be true is that doctors don't know everything.

[JBJBJB]

[user=11]linda[/user] wrote:

The one thing I have learned to be true is that doctors don't know everything.

Ha, Linda, you said it all. My mother told me this often. She is a good doctor but she told me she could NOT know everything. :roll-laugh:  

Good night,

JB

[Eva Holloway]

Linda,

I know it will take a long time to get well, but I will stick with it. I was on a high dose of prednison for a long time and weaned myself off after three years.I was already on Biaxin ( January 2008)when I went to see Dr. K. She told me to stay with it and didn't change me to Minocylin untill June 2008 because I had been put on a blood thinner. After I came off the blood thinner she put me back on Biaxin and brand name Minocin pulsing. I do Mino on MWF and Biaxin on TThSa. Seems to work well. I am also on Lamisil right now and just started with Thyroid.

I have been taking Iodoral, Cal-mag with boron, Vitamin D3, L-lysinn, B-12,  multi vitamin, probiotic, folic acid,

You may have a herx situation, but I am not sure. I started to have severe pain in my upper left arm, about 10 days after I started the antibiotic, where my arthritis always has given me a lot of problems. For about two weeks I could hardly dress myself. I started the drink with Lemon, water and olive oil (all blended together, skin and all). It works, but it is bitter even with a little sweetner.:(:sick:

I can't do the bath with epsom salt and peroxid it burns my skin too much. I am a redhead and very fair skinned.

As I said the bottom of my lung is still scared, but I am working on getting better. I tell everyone I WILL BE BETTER BY THE END OF THE YEAR.:D

I know Dr. K to be very true about what she tells you. Hopefully you will stick with the meds and once you start feeling better she may also realize you mean it. I would never go back to Prednison. Sometimes I think” if I take just 2,5 mg it won't hurt, but having ostoepenia and the weak upper body problem from that medication I know I will not go back to Prednison ever again.

I also have Ankylosing Spondylitis and Dermatomyositis and have a skin problem from that.

I know what you mean, when you say doctors don't know everything, many times they are guessing, just as they guess what medications they should give us.

Get well and stay that way,

Eva

Eva Holloway

[A Friend]

[user=266]JBJBJB[/user] wrote:

Has any one heard about this Rheumatoid lung disease? Do this happen often to RA patients? I know my Rheumy checked my lungs all the time. Perhaps that was why. […..]

“Causes

Pulmonary abnormalities are common in rheumatoid arthritis, but they often cause no symptoms. The causes of lung disease associated with rheumatoid arthritis are unknown. Sometimes the medicines used to treat rheumatoid arthritis may result in lung disease.”

How scary to think RA med would help with your symptoms,  also could cause your lung disease. Wow, unthinkable.

JB,

I have a cousin who is going through some scary liver issues, already there has been a stent inserted, but problems seem to indicate it needs to come out.  CT-directed biopsies are planned before anything more is done.  There is fear it is cancer.  He is interested in the “bicarbonate of soda chemotherapy” that we've read about recently. 

JB, I'm thinking it is very possible that in lung issues with RA  that fungus could possibly be in the mix.  Thought you — and others — might find this link interesting.  I certainly did.  Also, reading such as this certainly gives me hope that what Dr. TS has written (in another link:  http://www.curenaturalicancro.com/therapy-simoncini.html) — that cancer really isn't as complicated as has appeared for many, many years; and, also, what can cure it isn't always as complicated either.  Let's HOPE!!!

The following link concerns the lungs and how this type chemotherapy has turned around this lady's lung cancer for 20 years now:

http://www.thedcasite.com/dcaforum/DCForumID10/143.html
 
“sodium bicarbonate chemotherapy”

[Susan LymeRA]

Hi Linda,

I agree with everything you say.  Here is my suggestion to the field of rheumatology on how to gracefully transition from 100% immune suppression to a mixture of both.

Scientific research has found that many, but not all, people respond well to antibiotic therapy.  In some instances, remission is achieved, in some instances symptoms are reduced and in some instances, there is no improvement in condition at all.

Due to the positive results of antibiotic treatment in a good percentage of people, we feel it is worthwhile to try antibiotic therapy intially for all patients.  Depending upon the degree of inflammation and pain in each individual, DMARDS and Biologics may also be administered.  This will allow the antibiotics to reach the bacterias and help prevent joint damage until the causitive agents can be destroyed.

By taking this multi-faceted approach to treatment, it is our belief that a good number of patients can achieve and retain complete remission and enjoy a healthy life.

Now, wouldn't they just sound like heros?

Susan

 

 

[Susan LymeRA]

Eva and Linda,

Never give up.  As long as you live you have hope of healing.

Learn which foods support the lungs like sweet potatos and eat them.  Food is how our cells nourish and grow.  Make every bite count and eliminate any foods that are harmful.

Linda,

It sounds to me that Dr. K was giving you the “test” speech to see how serious you are about healing.  My first doctor acted that way upon my first visit.  I was pretty insulted, but he had such a clear plan of action.  I called him “the man with the plan”.

That certainty in his voice made me give him a try and boy was I ever glad I did.  He turned out to be the factor that saved my life and I mean that literally.  Also, once he saw my determination, he was the most caring, compassionate doctor.

Perhaps this is Dr K's approach also.

Susan

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