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susie54

Best Treatment you have found?

6 posts in this topic

Hi Everyone,

 

I know this has been brought up before but really am in a position right now where I need to increase my treatment of Mixed Connective Tissue disease. Sclero/lupus related. I am currently on 10gm of Prednisone going down to 5 next week. It is not holding my flare ups lately and they want to do more.

On one hand I have the neurologists who wants to treat it mostly with IVIG and the rheumatologists that would like to treat it more with standard Cellcept and other steroid.

I guess I was wondering what has worked best for everyone here.

MCTD is affecting everything, heart arrythmias, neuropathy, lungs slightly, liver and digestion problems starting and so and so on. THanks for any input. I have fought not treating this for so long but now I have to face that damage is being done. Susie54

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Susie,
As you know, treatments can be so individualized. There are so many factors as to what works for whom. For me (MCTD - poly/sclero) methotrexate and 10mg/day of prednisone worked o.k. for almost three years. We did have to add IVIg in year 2 because we couldn't get the CPK (muscle enzymes) to go down. That did the trick there. During the first 3 years I developed complete heart block and atrial fibs, so it didn't help prevent those.

When I developed lung problems in year 3, I was taken off methotrexate and put on Imuran. That lasted 3 weeks. I was then put on oral cyclophosphamide. That was a disaster, but I won't go there. smile.gif Finally I was put on cellcept (3 g/day) and I'm still on IVIg; however, I'm now at 8 week treatments. Hooray!!!! Lungs and heart are stable, muscles enzymes are normal, NO fatigue, working out again, and as long as I eat right and stick to some strict lifestyle changes, my GI tract works o.k. Having a little problem with reflux and swallowing again, but I think I have it under control. I still take 2.5mg/day of prednisone which just replaces what our bodies naturally produce anyway, so that's insignificant.

My major concern is the chronic atrial fibrillations. Medication worked for about year, then stopped working. I'm now trying some natural methods to reduce them since my cardiologist said there really isn't anything to do but stay on coumadin so I don't have a stroke. What a comforting thought!

Really hope you find something that works for you! Please share when you do. This is a good thread.

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thankyou Janey,

 

I read your MCTD and it is so like mine but you have developed so much more than I. I am sorry you have dealt with so much. This last heart problem was described to me by the pulmonologist as atrial fibrillation. THis is the second time it has happened but cannot catch it at the hospital. All they caught was PVC's. It really scared me. Do you feel the pacemaker was a big help in stopping those? My mother has one.

I know medicine is very exclusive to what is going on personally with each case, but overall I thought I would get some kind of lean on the IVIG or methotrexate or cellcept. Through all of these you stayed on a low dose of prednisone. That was interesting to me.

Thankyou for all you do on this board and taking the time to answer so thoroughly . My muscle problems and nerve act more in the realm of vascular neuropathy(diagnosed that). Susie54

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Susie,

Thank you and you are most welcome!

 

I don't know that much about vascular neuropathy so I just looked it up. WOW! I would think with that and the atrial fibs, you feel "kinda funny" sometimes. It talked about sudden changes in blood pressure. Do you feel that? My BP is steady as a rock - 100/60 almost everytime.

 

Unfortunately my pacemaker doesn't help with the A fibs. I didn't get the A fibs until after I got the pacemaker so my pacer is only rate responsive, but no defibrillator. It beats my heart 100% of the time, but it doesn't correct very well for the A fibs. Here's a good story: It is kind of weird, but funny in its own way - a very dear friend said that her Dad had a rate responsive pacer. At 92 years of age he was trying to die but the pacer kept his heart beating. They finally had to come turn it off so he could die! With me being 55, I find that comforting. :)

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello Suzie

 

I have diffuse SSc and am into my 12th month on Cellcept which has worked well for me so far and I can't pinpoint any side effects. I had no lung/heart involvement at diagnosis and as far as I know still don't.

 

I was on prednisilone 7.5mg but cut it out as I did not like the idea of the side effects and I was only on it for itching (maddening but not life threatening) anyway.

 

Hope this helps.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Suzie and all,

 

Suzie, which Doctor do you feel most connected to? With all the possibilities being thrown out there for you it makes for a tough decision. It takes some research too. I decided a few months ago to be very active in my treatment plan and pro-active no matter how intimidated the diagnosis or the doctors might make me feel. My last point with them now is my mortality and morbidity from this disease.

 

They have recently added SLE to my diagnosis of SSc according to my insurance company. My Rheumatologist has not told me that yet but it is on her insurance forms. I don't think my doctors know my insurance company lets me know all. It is all placed on my profile with them which I have full access to. The insurance company so far have been somewhat helpful in approving the treatments and tests that so many Doctors have been ordering. Hopefully the diagnostic crisis is over and things will settle for awhile. With the right meds and treatment plan the progression of the disease may be delayed for sometime, maybe even a long time.

 

We are still pretty young and could have some quality time and life left, at least those are my thoughts and we should protect ourselves like we would protect our children or loved ones. I know in SLE they call disease activity flares but in SSc I think it is more progression of the disease. Now that I know what I am up against I tend to lean towards the milder treatment with milder symptoms and more aggressive treatments for those aggressive or potentially aggressive symptoms and since labs don't always show what is happening go with your gut. We need to be more aggressive than the disease so we can take back some control. You have my support in what ever decision you make toward a treatment and plan. Take that step of faith.

 

Keeping you in my thoughts.

 

Judy


A happy heart is good medicine.

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