Newly diagnosed with Mixed Connective Tissue Disease. Methotrexate users? Help

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greypilgrim256
New Member


Date Joined Sep 2014
Total Posts : 9
   Posted 9/15/2014 12:13 PM (GMT -6)   
Hello. I am new to this site and was diagnosed with MCTD about a year ago. I was completely healthy, very active, and never had to visit the doctor. I am a 34 year old male and am having a hard time with this.

My symptoms started out with swollen hands in the summer. I didn't notice any Raynaud's prior to this. One day my rings just stopped fitting so well. A few months later I was noticing joint pain. Then I started having bad heart burn, which I had never experienced in my life. I thought I was having a heart attack.

After getting my blood work done and testing positive for ANA with a high titer, I was sent to a rhumey. Fortunately he gave me further blood work and it came back positive with RNP antibodies at 2.9. Is this high? Does this fluctuate?

I was started on plaquenil, which I feel helped a little with the joint pains but did nothing for swelling of the hands, but I don't' think it was enough to keep it under control. I am currently on 25mg prednisone, 400mg plaq, and things seem much better, however from all my research my understanding is that I cannot stay on the prednisone indefinitely. Is this true? I don't seem to have any negative side effects thus far.

My echocardiogram for my heart came back fine and there doesn't seem to be any lung involvement from the CT scan I had.

Currently my hand swelling has gone down considerably, I still have minor ankle swelling, a small ulcer on my tongue, and sleight difficulty swallowing, which is either from the GERD OR from Myositis, which scares the hell out of me. How can I know if the swallowing is from GERD or myositis?

I have no fatigue (thankfully), no more joint pain after going on prednisone, and am able to lift weights with no problem.

I think my next move may be to try Methotrexate? Is this normal if there is no internal organ involvement? I am VERY nervous about starting it after reading about the side effects.

I have been lurking on this board for months but this is my first time posting. I have read some VERY informative and helpful info here particularly from someone named Bsime (Bill)

I guess my main question is for anyone that has been diagnosed with MCTD and has used Methotrexate.

Did it help you? In which ways? Were there any terrible side effects? How long did you use it for?

Sorry for the long rant, this is all very new to me and I am still coping with the diagnosis.

NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 541
   Posted 9/15/2014 2:36 PM (GMT -6)   
Hi,

I was diagnosed with MCTD several years ago. At first I was okay with just plaquenil, but I started having flareups that were preventing me from working. My Dr. put me on Methotrexate. I, like you, was very hesitant to start taking it, but my condition warranted it and I wanted to feel better. I have been taking it ever since and haven't suffered from any serious side effects. The only side effect for me is a little more fatigue the day after I have taken the Methotrexate. If you have qualms about it you need to let your Dr. know and discuss it with him or her. I hope this helps a little.

Take care,
Mary Ann
MCTD, Fibromyalgia,Pulmonary Hypertension, Pulmonary Stenosis, High Blood Pressure, IBS, Degenerative Disc Disease, Depression, Anxiety

"No matter what happens, God is in control. He is God, I am not, what a relief!"

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/15/2014 2:40 PM (GMT -6)   
It's wise to limit how much and how often you're on predisone. Long term use can lead to bone weakness among other things.

If the plaquenil is helping then they hold off moving to the stronger stuff.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

greypilgrim256
New Member


Date Joined Sep 2014
Total Posts : 9
   Posted 9/15/2014 2:54 PM (GMT -6)   
Sadly, the Plaq was not helping as much as I had hoped it would. It certainly helped with some of the joint pain, but the inflammation in my hands and ankles did not seem to benefit. I know you are supposed to be a tea totaling abstainer from alcohol on Methotrexate and haven't had a drink in 2 months while on the Prednisone, but I am not looking forward to it. Such is life.

Mary Ann, may I ask what your prescription dosage is? I am very unfamiliar with all of this. I have an appt with Robert Wood Johson Scleroderma specialist in Oct. but have been frantically reading all I could about MCTD.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1341
   Posted 9/15/2014 4:10 PM (GMT -6)   
Welcome to the mctd club. It is an overlap syndrome that was first noted in 1972 and by definition can have symptoms of sle lupus, polymyositis, and scleroderma. As time went on it was found that other AI symptoms can be present. Every case is different in presentation, severity, development and response to treatment. Some cases are really mild and only have symptoms of one or another of the diseases. Plaq is typically used for mild lupus cases.

Prednisone is the first line treatment for many AI diseases, including mctd but it is not a drug you want to take for long term treatment if possible. It does work for most and often works quickly to reduce symptoms and inflammation but it can have nasty side effects if used for years at moderate to high doses. Most docs will introduce a pred sparing drug like methotrexate or azathioprine (Imuran) at the same time and then slowly taper pred if symptoms are abating. Both of those are generally well tolerated for long term use. There are lots of other treatment options for resistant cases but hopefully you will not have those problems. I know some people who have been on pred for decades because it caused adrenal insufficiency. We cannot live without the cortisol they produce and pred, which is a synthetic version, shuts down the adrenal production. Today, docs are more knowledgeable about long term use.

Polymyositis is an idiopathic inflammatory muscle disease that attacks muscle cells directly. Classic clinical symptoms are symmetrical muscle weakness around the hip and shoulder girdles. Most patients first notice difficulty getting out of chairs, going up stairs, and raising arms over their head. Progression can take months or can be quite sudden like my case. Usually some labs are elevated: cpk, aldolase, crp, or liver numbers like ast and alt. CPK is the most common but it is not a direct test for myositis. Experienced docs will test for myositis specific antibodies to determine best course of treatment.

Your description of symptoms indicates you don't have major muscle involvement at this time but maybe some...dysphagia (difficulty swallowing) and gerd. PM can hit muscles other than skeletal muscles. PM can also hit those small muscles used in swallowing. Do you have any upper body or core weakness? I have barretts esophagus (the next stage after gerds) and had dysphagia and could not swallow anything. My case was extreme and I lost 40 lbs of muscle in a week which left me quad with a feeding tube. However, I have recovered and lead a fairly active life despite substantial and permanent loss of muscle cells.

Dysphagia could also be caused by gerd damaging your larynx. Best way to know is to have a video swallow test to see what is actually going on. Have you had an endoscopic exam to check out both gerd and your dysphagia? See a gastro enterologist for this. I have gotten them annually for years but am now on a longer interval since I am doing so well.

The edema you describe is suspicious of kidney involvement which is common with lupus. I had it. The condition is called proteinuria and protein is leaked into your urine (bubbly urine is a sign of it). This causes edema but is treatable if caught early. If your new doc suspects this condition I recommend seeing a nephrologist.

In answer to your question about meth, it is commonly used as are other meds like Imuran. It is impossible to say which will work best but which antibodies show up help docs decide which will work with you. I took pred for 6 months but it did not help and it took IVIG to save my life. After that pred and Imuran worked fine and I have been off all meds for years. My docs did not want me to take meth because it was suspected (wrongly) that I had lung involvement. Turned out I did not. Meth and Imuran take many months to be fully effective so most likely you will take some pred during that time.

There is a site for the Myositis Association with a forum if you need more information about myositis. On their home page you can access the latest information on myositis and mctd is considered a sub type. I just came back from their annual patient conference in Reno earlier this month and listened to the many doctors they brought there to speak on these diseases. They have 20 doctors on their medical advisory board. www.myositis.org

Let me know if you have more questions and I will try to answer them but it is impossible to predict outcomes and treatment for individual cases. Just know that most are treatable and there are many options for care even for tough cases like mine. I lead a normal and fairly active life (skiing golf, workouts, hiking) despite my deficiencies and age (in my 70s).

Bill

greypilgrim256
New Member


Date Joined Sep 2014
Total Posts : 9
   Posted 9/16/2014 5:07 AM (GMT -6)   
Thank you very much for your informative and in depth response. I will take some of this info and my concerns about my symptoms to my doctor. Best wishes to all.

snowcone
Regular Member


Date Joined Jul 2012
Total Posts : 73
   Posted 9/17/2014 10:18 PM (GMT -6)   
I have been having muscle pain in my legs and muscle weakness in my upper arms. Today my rheumy gave me shots of cortisone in my leg muscle. I think I may be developing myositis!


Its hard to stand without my legs hurting and wanting to give. I hate it!!
The offer still stands- John 3:16

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1341
   Posted 9/18/2014 7:24 AM (GMT -6)   
Have you been diagnosed? Are you taking controlling meds? What type of myositis? DM, PM or IBM?

Bill

greypilgrim256
New Member


Date Joined Sep 2014
Total Posts : 9
   Posted 9/18/2014 10:56 AM (GMT -6)   
Met with my rheumy yesterday. Thankfully the Prednisone is helping to dramatically reduce the swelling in legs and hands. I also had a biopsy done from chunk of my hand….not fun.

He said in two weeks they will know the results. I am assuming they are looking to see if it Sclero or Lupus? Is that possible to distinguish between the two based of biopsy of swollen area? Based on that finding he will most likely start me on Cellcept rather than the Methotrexate because metho has been known to cause mouth ulcers…which I have oh so luckily been blessed with.

Doctor also said it is not uncommon for people to go into remission with drugs like cellcept and metho so I guess that is promising.

One question. Are immosuppresant drugs always required or is Prednisone + plaque nil sometimes enough to keep things in check? Does this disease always progress into Sclero or Lupus or can it remain as it is? Such a confusing and frustrating thing.

Is Prednisone considered to be an immunosuppresent drug and if so at what dose does it become/remain one?

Also, my RNP levels were not going higher…however they have not gone lower so I guess that is a wash. Is an RNP level of 2.9 considered high? Can that go down?

Post Edited (greypilgrim256) : 9/18/2014 11:00:58 AM (GMT-6)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1341
   Posted 9/18/2014 11:22 AM (GMT -6)   
Scleroderma and lupus skin problems are different. I have never had any symptoms of scl in 10 years unless you count raynauds phenomenon which is most commonly associated with scl. However it is also common with myositis and lupus. Doesn't matter because there is no evidence of scl and the biopsy I had was a muscle biopsy in my quad after an mri to confirm that I had pm and not something else. I was not responding to prednisone was the reason for the biopsy which confirmed pm. Also had a punch biopsy 2 years ago to determine if a rash I had developed was lupus or not. The results were negative.

Many patients do go into remission. I was in remission for over 8 years after taking pred and Imuran but I now have autoimmune hepatitis (had it 10 years ago along with everything else) but no clinical symptoms and no treatment for now. Good chance for remission but many go through periods of remission and flare. Remission is defined as no clinical symptoms and no controlling meds. Many have no symptoms but take meds.

The reason meth and other meds are given is that they are often needed to treat a patient....a drug cocktail. Some take 2,3 or even 4 meds at once. Meds like meth and Imuran are also referred to as pred sparing and are often better tolerated for long term treatment. Introduce both and taper pred if the treatment is effective. This process can take months or even years. Don't be in a rush to taper unless you have serious side effects...not everyone does.

Lupus is the disease with a 1000 faces....mctd has exponentially more. A case can be mild to life threatening. Every case presents and progresses differently. Mine started with lupus then pm....no scl. It is not inevitable that you will progress to some textbook scenario. We are all different. I have not met anyone who had a case just like mine...good thing since mine was so awful but the recovery was better than some with milder cases. Nobody can explain that.

My advice is to not worry or try to figure it out. Do not ignore new or worsened symptoms but live each day without fear. It is probable that your case is treatable and you will have a life...maybe a little bit complicated but adjust your normal and live each day to the fullest.

Pred is a powerful anti inflammatory and suppression med. It has some suppression power at any dose but below 10mg is considered sub theraputic I believe. Many take doses below 10mg forever due to adrenal insufficiency. Low doses of pred are often used with other meds in doses in the single digits.

Don't worry about your rnp antibody. It is there and used for diagnosis of mctd but no need to follow. It is not a good indicator of disease activity. It does change like everything else. More likely you will follow sed rate or cpk but even those can be misleading. Don't get hung up on labs they are often misleading and are most useful in the initial diagnosis. It is still not known if autoantibodies are just a result of the disease or actually cause symptoms of the disease. Below are 2 links. Dr Gourley just retired from NIH and is one of the most knowledgeable myositis experts in the world.

http://www.myositis.org/learn-about-myositis/diagnosis/antibody-testing

http://www.myositis.org/storage/documents/2014_conference/Presentations/What_your_autoantibodies_tell_us_about_your_disease.pdf

greypilgrim256
New Member


Date Joined Sep 2014
Total Posts : 9
   Posted 9/19/2014 3:58 AM (GMT -6)   
Thank you again for the info. I will look into more info you posted.
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