MCTD/SD

[JBJBJB]

I was told I have mixed connective tissue disorder with several scleroderma manifestations. I don't have any skin involvements. Recently the doctors found lung fibrosis and I have about 75% total lung capacity. In addition, I have raynaud's, acid reflux, hoarse voice.

I have e-mailed several wonderful people on this board about their AP experiences. I am very encouraged and touched by how much love and support y'all gave to me.

Yes, I am nervous, scared and worried about incoming AP treatment. I will be driving 10 hours to see Dr. S on April 22nd. My rheumy told me I was “wasting your precious time” because I am losing my lung capacity. His words echo in my mind every day. However, the more information I find from this message board, the more determined I am to give this AP a try.

If you want to share your experiences with me, I am all ears. I especially like to know from those who have MCTD/SD like me, how long it takes to notice the improvement and if you still take those immune-suppression medicine while you are on AP.

Thanks to all!!!

JB

MCTD/SD/Pulmonary Fibrosis/Pulmonary Hypertension/Raynaud's/Ribs inflammation/

 

[Anonymous]

Hi JB,

I too have MCTD and was diagnosed  in June 2004.  I started on AP in Jan. 2006 after being on a low-dose steroid regimen for about 1 1/2 years.  I had some lung involvement, Raynauds, hands and feel swelling, joint pain all over, general weakness and malais-just feeling sick 99% of the time.  After starting on AP it took about six months to see some results.  The first to go was my fatigue then my overall sick feeling left.  Gradually my joint pain subsided and is now completely gone except for some minor discomfort in my hands and feet at times.  I could certainly live with this!  Also the major swelling in my hand and feet is all gone.  I can now wear rings and shoes that I haven't worn in years.

I would encourage you to welcome AP.  I know it can get to be frustrating knowing which avenue to follow; but believe me this really works.

Good luck.

Barbara

 

[JBJBJB]

I have every symptoms you got, except feet swelling. I also have acid reflux. I am really encouraged. I need it very much. Thank you for spending the time to write back.

Just past 2 weeks, I took Azithromycin for my bronchitis infection. I had to take 2 pills during the first day and 1 pill each day for the rest of 5 days. After two days, I started feeling really pain in my joints and muscles. I had been pain free for almost 6 months under 400 mg plaquenil 5 mg prednisone. I am wondering if this is some Herx I am experiencing.

I do worry about withdrawal plaquenil. Since I have lung involvement, I need to keep my inflammation under the control or I'd be in big trouble. I will ask Dr. S when I go to see him. I am curious to know when you took AP, did you take other “conventional” med with it?

JB

 

 

[kramstine]

Hi JB,

I was looking for another post you wrote, and found this instead, and I just had to answer. I really know what it feels like to experience ones lungs get worse and worse, and be able to do less and less. I have  had SD for 7 years. And today I need oxygen 8L all of the time(you can read my “history” if you want). The last one-two years its gone really fast – the wrong way. But all the time its gotten worse and worse. None of the medicines that I have tried have really helped. Maybe it has postponed the development of fibrosis, but I

[JBJBJB]

[user=263]kramstine[/user] wrote:

I really wish I had found AP before, just a year…I

[kramstine]

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

The first improvement I had after 5 days IV is that I can breath a little better, my trachea is not as tight. 
 

That was exactly how i felt after 5 days iv!! Even though it was just a very little better, I felt like that for 4 wonderful days, before i started herxing…Yesterday I had another IV. Just one 900mg dose. It also seems to make me feel a bit better. When is your next IV? Do you know? I wish for you, that AP will help you quikly.K

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