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

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.

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.

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

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!!

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)

Thank you again for the info. I will look into more info you posted.