Mixed connective tissue disease- alternative therapy

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lisabug
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Date Joined Jun 2012
Total Posts : 5
   Posted 6/5/2012 12:23 AM (GMT -6)   
smhair  I recently recieved an elevated RNP level on lab. I have an appointment with a Rheumatologist in two weeks. I am fearful of the side effects of Prednisone, taking Naproxen, Tumeric, and trying swimming and yoga. My biggest challenge is extreme fatigue, joint pain, and muscle weakness. What are alternative therapies.
 
LisaBug

Elbee
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Date Joined Apr 2012
Total Posts : 50
   Posted 6/5/2012 7:52 AM (GMT -6)   
A diagnosis with a connective tissue disease does not mean you must take steroids. However, steroids can be very useful -- and sometimes essential -- for stopping inflammation and reducing the damage caused by that inflammation. Steroids, like prednisone, are given to immediately get inflammation under control, while a "steroid-sparing" agent like Plaquenil or methotrexate is given as longer-term therapy. The questions are whether the inflammation is causing such damage or discomfort that immediate control is necessary.

In my case, I do not take prednisone. I have a UCTD diagnosis, and my disease causes skin lesions (cutaneous inflammation) and muscle pain without weakness (presumably caused by inflammation; I have not had a muscle biopsy). I have been able to manage my pain with naproxen (500 mg, twice a day), and I take Plaquenil as a long-term therapy that will hopefully get everything under control in the next few months. Because I do not have evidence of organ damage or muscle damage causing weakness, my rheumatologist and I decided to stay off steroids because they do come with their own host of side-effects.

HOWEVER, if you're experiencing fatigue that is significantly affecting your quality of life and muscle weakness, your rheumatologist may tell you steroids are necessary. And try not to be scared. Prednisone can really suck (I've been on it before, and didn't love it), but many people tolerate it pretty well, and the goal is always to taper off once the steroids do their work. Side effects can be scary, I know, but sometimes they are worth it when you are saving yourself from long term muscle, joint, or organ damage.

My advice is just to come to your rheumatologist visit with your concerns about prednisone. She will let you know if she thinks prednisone is necessary and why. You should ask her how long she expects you to be on prednisone, at what dose, and how she will manage tapering you off. Also ask about steroid-sparing therapies. You can also ask about what you are risking if you decline steroids.

Do continue with the swimming and yoga! Those activities are good for you, and you don't want to lose that! Also, if you stay on higher doses of naproxen long-term, get a proton-pump inhibitor drug like Prilosec to take daily, to avoid stomach damage and upset.

Anyway, Lisa, welcome, and I'm sorry you're experiencing this right now. We all know it's not fun. We're here if you need us, and let us know how the rheumatologist visit goes!

Lynnwood
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Date Joined May 2005
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   Posted 6/5/2012 10:06 AM (GMT -6)   
Great answer, Elbee, I can't think of anything to add!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Bsime
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Date Joined Apr 2006
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   Posted 6/5/2012 4:39 PM (GMT -6)   
MCTD is a complicated disease and can develop symptoms of lupus, scleroderma and/or polymyositis.  It can be relatively mild or it can be severe.  It is important to suppress your immune response so your case does not develop into a severe one.  Prednisone is the first line treatment and is usually effective quicker than other treatments.  Experienced doctors will also introduce a prednisone sparing drug that is better tolerated long term and taper slowly off prednisone.  Keep in mind that while everyone has some side effects from pred not everyone develops severe side effects.  I was on it for 6 years and the worst side effect was hypertension which had to be treated.
 
There are no alternative primary treatments that have been proven effective.  A change of diet to an anti inflammatory one can be helpful but it is not going to control your immune system.  Physical activity is good but will not quell your immune response.
 
Go into your appointment with an open mind and listen to the advice your rheumy gives you.  Get a second opinion if necessary but make sure th rheumy is experienced treating AI diseases.  Early diagnosis and aggressive treatment usually produce better results.  There are other treatments but some of them are very expensive and are often only approved by insurance companies after trying other, less expensive treatments.  When those do not work insurance companies will approve treatments like cellcept, IVIG, and rituxan.  All treatments have potential side effects.  Your disease is a reality and don't assume you will have difficulty with treatment. 
 
All Nsaids, like naproxen, which only addresses inflammation but not the cause, have side effects when taking too much.  Pred is a much more powerful anti inflammatory drug but it also suppresses the immune response which is why it is so effective in most cases.
 
What were your other labs?  Sed rate, cpk, aldolase?
 
Bill

lisabug
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Date Joined Jun 2012
Total Posts : 5
   Posted 6/6/2012 8:25 PM (GMT -6)   
Bsime said...
MCTD is a complicated disease and can develop symptoms of lupus, scleroderma and/or polymyositis.  It can be relatively mild or it can be severe.  It is important to suppress your immune response so your case does not develop into a severe one.  Prednisone is the first line treatment and is usually effective quicker than other treatments.  Experienced doctors will also introduce a prednisone sparing drug that is better tolerated long term and taper slowly off prednisone.  Keep in mind that while everyone has some side effects from pred not everyone develops severe side effects.  I was on it for 6 years and the worst side effect was hypertension which had to be treated.
 
There are no alternative primary treatments that have been proven effective.  A change of diet to an anti inflammatory one can be helpful but it is not going to control your immune system.  Physical activity is good but will not quell your immune response.
 
Go into your appointment with an open mind and listen to the advice your rheumy gives you.  Get a second opinion if necessary but make sure th rheumy is experienced treating AI diseases.  Early diagnosis and aggressive treatment usually produce better results.  There are other treatments but some of them are very expensive and are often only approved by insurance companies after trying other, less expensive treatments.  When those do not work insurance companies will approve treatments like cellcept, IVIG, and rituxan.  All treatments have potential side effects.  Your disease is a reality and don't assume you will have difficulty with treatment. 
 
All Nsaids, like naproxen, which only addresses inflammation but not the cause, have side effects when taking too much.  Pred is a much more powerful anti inflammatory drug but it also suppresses the immune response which is why it is so effective in most cases.
 
What were your other labs?  Sed rate, cpk, aldolase?
 
Bill
>
 
 
Hi Bill, my Rheumatologist that I am seeing does specialize in autoimmune disease. Do drugs that address the immune response cause an increase risk of infection?  Fatigue, muscle and joint pain have affected my quality of life so I am open to trying Prednisone and other therapies. My doctor only did labs for RF and ANA with studies. Not being able to have the energy and experiencing pain has decreased my enjoyment of activities like biking, walking my dogs etc. What interventions have been effective for you?

lisabug
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/6/2012 8:26 PM (GMT -6)   
Hi Bill, my Rheumatologist that I am seeing does specialize in autoimmune disease. Do drugs that address the immune response cause an increase risk of infection? Fatigue, muscle and joint pain have affected my quality of life so I am open to trying Prednisone and other therapies. My doctor only did labs for RF and ANA with studies. Not being able to have the energy and experiencing pain has decreased my enjoyment of activities like biking, walking my dogs etc. What interventions have been effective for you?

lisabug
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/6/2012 8:34 PM (GMT -6)   
Elbee, thanks for your helpful and thorough reply. Naproxen has been helpful. Today was a good day and I was able to ride my bike without extreme pain. What exercises do you find helpful? How does Plaquenil work and have you had good resuslts??
Lisa Bug idea

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 6/6/2012 10:12 PM (GMT -6)   
First level of intervention is an effective immuno suppressant to stop your immune system attacking you.  Lupus can do damage to virtually any part of your body causing fatigue, pain and weakness.  The best way to address these issues is to be as active as you can and recondition your body.  Of course, if lupus is constantly active that is probably impossible to do.  An anti inflammatory diet, supplements to address any nutrional problems will all help but there is no pill or supplement that will restore your general fitness and well being.
 
I have made the journey from quadriplegic (polymyositis) to fairly fit and active again but it was mostly due to PT and continuing to exercise for the past 6 years.  Treatment with IVIG is what finally got my immune system under control and pred and imuran kept it that way after that treatment.  I have not taken any suppression meds for the past year.
 
Wish I could direct you to a pill in a bottle to return your body to health and fitness but it does not exist.
 
Any suppression meds increases your risk of infection and cancer because they suppress your immune system.  Some patients have a lot of problems with infections but I was lucky and had no problem.  However, I have had skin cancer (basal cell fortunately) 4 times in the past 4 years.
 
Bill

lisabug
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/6/2012 11:09 PM (GMT -6)   
What kind of exercises do you do? With your current regimen is your pain under control? My pain varies from day to day. I do have flares when I am under stress or work long hours. I will research the disease modifying drugs .
LisaBug

Elbee
Regular Member


Date Joined Apr 2012
Total Posts : 50
   Posted 6/6/2012 11:15 PM (GMT -6)   
Hey, Lisa, I'm glad you had a good day today!

Regarding exercise, I'll be honest-- I struggle with it. The more I use my legs, the more they hurt, and that makes me hesitant to really get moving like I used to-- running, all day hikes, long bike rides etc. So, I walk. Every day. For at least three miles. That's my baseline. If I'm feeling good, I may go hike some hills. I used to do a lot of yoga, but I've lost some strength in my upper body, which makes yoga harder. After talking with my (super-awesome) primary care doctor, I've decided my goal for the summer is to (a) get back into a gentler form of yoga and (b) to start swimming for exercise. My doctor thinks swimming might cause me less leg pain.

Regarding Plaquenil (generic name hydroxychloroquine), it's a funny drug. It was developed as a treatment for malaria, and at some point, someone noticed that when people with lupus took it, sometimes their symptoms would get somewhat better. Though no one knows exactly how Plaquenil works, I think the favored theory is that it modulates or interferes with how our immune system cells communicate, and somehow, this controls autoimmune diseases. From my research, Plaquenil is one of the most gentle of the disease-modifying drugs, so it's less likely to leave you at risk of infection. One known serious side-effect that happens to something like 1 in 5,000 people after many years of use is that it can cause retinal deposits, which can affect vision. So, when you're on Plaquenil, you have to get regular eye exams. It can also commonly cause stomach upset when you first start taking it, but for me, that went away after four days.

I've only been on Plaquenil for less than a month right now, and it can take three or four months before you can tell if it's having an effect. From what my rheumatologist told me, if it works, I'll likely realize in a few months, "Hey, I haven't had a rash in a long time, and my muscles are feeling a little better!" Right now, I don't feel much different than I usually do, but because I am experiencing zero side effects from Plaquenil currently, I'm happy to stay on it for a bit to see if it works for me. Many people I've talked to, especially folks with lupus, consider Plaquenil their "miracle" drug because it can keep a disease under control with fewer side-effects than some of the stronger disease-modifying drugs. That's why rheumatologists often like to start with Plaquenil before they try stronger drugs that might be more expensive and have higher risks of side-effects.

Trust me, I know how intense all this is to deal with. There are lots of folks here with a wide range of experience -- like Bill, who is a wealth of information on MCTD and polymyositis -- so keep asking questions if you have them, and we'll do our best to help. Oh, and venting is encouraged, too, if you need it.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 6/7/2012 9:40 AM (GMT -6)   
Lisa,
 
My disease is in remission so my immune system is not attacking my joints and muscles any longer.  However, I have a lot of physical damage particularly from PM after losing 40 lbs of muscle and do have various pain issues but nothing like what I had in the first year until the disease was brought under control.
 
Instead of focusing on pain issues focus on getting your immune system under control which is the source of the pain.  Pain meds won't help in the long run.  Most docs will start a regimen of prednisone for mctd and introduce imuran or methotrexate and taper pred if things are working.  It can take a long, long time to suppress your immune system.  One of the big mistakes is when a treatment is effective and you become asymptomatic treatments are stopped.  Usually, the autoimmune response (a flare) kicks in and you start the cycle all over again.  There are less powerful meds like plaquinel which is often the drug of choice for mild cases of lupus.  Discuss the various options with your doctor but keep in mind that dealing with the immune system is a long slog for most of us.  I was on pred for 6 years and imuran for 5 and willing to increase doses or try something new rather than let my immune system attack me again.
 
Some patients eventually go into remission and can come off meds.  Some have chronic, stubborn cases and need low doses of some med to work.  Every case is different in presentation, intensity, and response to treatment so there is no one size fits all treatment.
 
In regard to exercise.  It is not important what that is but take it easy.  If you have a lot of joint pain water exercises, either swimming or in a therapy pool, are good. But keep in mind these are not weight bearing and are not beneficial for your bones and that is important if you are taking pred or some other drug that can affect your bone density.  I had a long formal course of PT, OT and speech therapies as both an in and out patient and then gradually went back to my normal routines at my health club....free weights, resistance machines, range of motion, stretching, elliptical, walking, and eventually some calisthenics.  I do not run anymore but wish I could...  Again, it is not as important what but do what you can.  If you have serious limitations ask your doctor for an order for PT.  If not, find a physcial trainer who works with seniors or the disabled....not someone who trains young athletes because they will take too aggressive an approach.
 
There is a biological imperative to use our bodies and the old adage of use it or lose it applies no matter whether healthy or sick.  There are many studies about the benefits of physical activity and that moderate activity can acutally have an anti inflammatory effect. If you you joint problems, moderate exercise is very important to maintain your muscle strength (50% of joint support comes from muscles), flexibility, and range of motion.  The impulse is to do nothing but that just makes the problem worse in the long run and that leads to more disability and increased pain.
 
Bill

Nana Monster
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Date Joined Jul 2009
Total Posts : 968
   Posted 6/9/2012 10:10 PM (GMT -6)   
If you want to try alternatives check out a good herbal shop. I go to Vitamin Warehouse in Syracuse, NY. Bashir is my
Godsend. Without his help I sure wouldn't be walking right now. I have RA, lupus, fibro, lipomas, scoliosis, sciatica
a trashed spine, knees and hips. Now my hands are going. The only dr meds I take are skelaxin and hydrocordone.

Instead of predisone try Yucca root as it's a natural steroid
For muscle weakness go for Beta Alanine. It's an amino acid and helps a lot. Super Cissus works well in conjunction with it.
I'm looking for a good amino acid blend and am now doing some research on it. I need to connect with Bashir on a routine
for the lupus. He was telling me of 3 herbs to try together for it. I go plants as much as possible and even with the skelaxin
and hydro are plant based. I cannot take the synthetics as they really screw me up bad. The rhummie wanted to put me
on pacquinel but I'm afraid of losing my eyesight on it. So she suggested methroxerate and I told her I like living as one
of the major side effects is cancer. No thanks. yeah yeah If you need any herbal advice contact me. What I don't know
I'll find out for you.
Nana Monster
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