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1. • CommentAuthorhazelsoldest
   • CommentTimeNov 2nd 2009

    # 1Report Post
   I am a retired Registered Nurse (retired 10 years), worked in oncology and finally Hospice in the last 12 years I practiced. About 13 months ago I was dx'd with MCTD, I had never heard of MCTD. I was familiar with Lupus and had cared for patients with lupus, and I was sympathetic to say the least! Now I have an illness comprised of lupus, polymyositis,and scleroderma. I trust my rheumatologist, and I feel he is very up to date in the care and treatment of my illness. We are having a rough time getting my CK to anywhere near normal. I was on steroids for about 3 months, they didn't do the trick, next I took azathioprin for about 4-5 months and now I'm on Cytoxan for about the last 5-6 months.
   To complicate issues, I was dx'd with collagenous colitis 4 years ago. One year ago I was dx'd with sleep apnea and now use a CPAP.
   On Nov. 9,09 I will have an EGD and a barium enema because I had a positive hemocult. A colonscopy is not on my agenda because have a 3.7 white count as of Oct.15,09.
   Sometimes I feel totally overwhelmed and I don't think I could go to another Drs. appt without my husband ( I am so very blessed with him) . I would like to know who has a really good coping method. Thanks, Beverly
2. • CommentAuthorangiegaljour
   • CommentTimeNov 2nd 2009

    # 2Report Post
   Beverly, try to remember there are so many other people out there whohave it so much worse. Thank God for the medical technology we have and that it is available. Family is definitely something to lean on and be thankful for. I know what you are going through. Sometimes you just think you can't go on, but, somehow you will find the strength to hang in there for yourself and your family.
3. • CommentAuthoralcyon73
   • CommentTimeNov 3rd 2009

    # 3Report Post
   Beverly;
   
   I don't have MCTD, I have cryoglobulinemia. Like many people with autoimmune disorders, I have my atruggle against my disease. I'm currently in remission and I still have wounds healing from the vasculitis caused by my latest flareup. I've found that coping with this disease has been a great challenge, both physically and emotionally but somehow I seem to get by.
   
   When my disease is flaring I have symptoms of arthralgia that are virtually indistinguishable from rheumatoid arthritis. The joint stiffness, pain and muscle weakness is positively crushing. I ultimately develop vasculitis that causes painful skin ulcers and gangrene on my hands and feet. The vasculitis is painful and can be life threatening if untreated, so I have to be on the alert for the slightest indication of vasculitis..
   
   To cope with this I set goals for myself. I determined that I could not afford to let this disease stop me from living my life and that I would adapt as best I could and either overcome the problems, or work around them, but that I would not let this disease defeat me. I had to learn about my disease. I educated myself regarding my condition and I strove to overcome. I had to learn to compromise.... when to push ahead against all odds and when to knock off and take a power nap. I had to learn to work closely with my doctors, and with their help and appropriate medication, my condition has proven to be treatable.
   
   I can't offer more to you than to say that you are not alone in your struggle. I wish you wellness and I hope you and your doctors can soon bring your condition into remission so that you can move forward. Hang in there!
   
   best regards
   Glen
4. • CommentAuthorkere
   • CommentTimeNov 12th 2009

    # 4Report Post
   Hi...
   
   I am a 47 year old nurse that sometimes feels like she just cant go on any longer...I have a +ANA and when they titered it out it showed I had scleroderma...The rheumatologist I have been too ( I have been to 2) says its not...They cant seem to diagnose my disease...All I know is I feel like I have a severe case of the flu all the time...I am progressively getting where I cant do anything but sit here and cry because I feel so bad...I have always been very active, and love to do things with my family...Matter of fact they are going camping on the river this week-end and I just dont think I can do it...I am so sick and tired of being sick and tired...The physicians say I definitely have a connective tissue disorder they just dont know which one...I have a few symptoms of lupus, a few symptoms of scleroderma but not enough to say YOU HAVE THIS!!! Do you have any suggestions of what I can do to try and figure out which disease I have? I just dont feel I can keep going...I am one to never call in sick to work...but I had to call in today and all I can do is sit and cry about it...I live in Florida and if any of you know a good specialist around the Panama City area I would really appreciate it...Thanks for listening...
   
   Terri
5. • CommentAuthorlaurie
   • CommentTimeDec 14th 2009

    # 5Report Post
   Terri,
   
   I am a 50 yo female that has been diagnosed with MCTD within the last year and a half. My reumatologist has me currently taking Plaquenil (my understanding an anti-rejection medication used sometimes in much higher dosages for cancer patients), Lovasa (a prescription strength Omega 3 supplement), Folic Acid (somehow helps restore or prevent problems from taking Plaquenil, like sores in my mouth) and Vitamin D (my levels were very low and taking it has improved my energy level).
   
   Like you, I felt like I had the flu all the time. Every time I went to see my general practitioner, which was often because I didn't feel well, I would always be running a lowgrade fever. I would feel really sick the next day if I spent any time out in the sun, particularly if it was hot outside - my cheeks would turn a very weird shade of red-purple and I would be able to do nothing except lay down for at least the next 24 hours. I later found out that this "mask" was a sign of Lupus (which I don't have). I was also having problems with my bowels and had an inflamed rectum (sometimes a sign of Crohns Disease, also which I don't have). My reumatologist diagnosed me with MCTD.
   
   The Plaquenil helps me to feel much better. The generic version upsets my stomach a lot, but the name brand does not. Although I feel a lot better than I did a year or two ago, I am not full of energy and have learned to do what I need to and really want to do, not everything I "should" do. I pray each day that God gives me the strength to do what I need to do and the wisdom to know what that is, and I ask Him to take care of the rest.
6. • CommentAuthorKaren1963
   • CommentTimeDec 14th 2009

    # 6Report Post
   My heart breaks for you all. I have had a primary immune deficiency for the last 16 years and have begun to develop numerous auto immune diseases in the last couple of years. While the Common Variable Immune Deficiency causes me to have no antibodies, there by wreaking havoc with my ability to fight off any kind of infection, the auto immune problems are incredibly painful and they just keep piling up. I have tried so many drugs to deal with the pain, but have been allergic to most of them. Even plaquenil makes me violently ill, and my rheumatologist is walking a fine line trying to treat the inflammatory arthritis, Sjogrens, chronic fatigue and fibromyalgia without suppressing my immune system too much. Fortunately, she is willing to work closely with the immunologist, and that gives me peace of mind. I am only 46 and have many years of this ahead of me, but I thank God that He provides strength and support to help me through.
   I have to add that one of the problems with these types of illnesses is that others think you look just fine, when in fact, you are dying inside with overwhelming pain & fatigue. If not for other patients who have been there themselves, I think I would spend a whole lot of time crying my eyes out and never get over being depressed. It's amazing how much empathy I can have with the patients who come to the ear, nose & throat clinic I work in. Some of them have cancers and other serious conditions, and I can, at least, tell them I understand what life is like when every week there are doctors appointments and you run out of money from copays and coinsurance. They appreciate knowing they aren't alone. I'm glad I'm not alone either!
7. • CommentAuthorLibrarian35
   • CommentTimeJan 20th 2010

    # 7Report Post
   It's my understanding that Mixed Connective Tissue Disease is a combination of two or three very specific autoimmune conditions. My Rheumatologist has diagnosed me with Undifferentiated Connective Tissue Disease, since I exhibit symptoms which are similar to, but not identical to, many different AI conditions. No matter what, the treatment for most AI conditions is the same -- Prednisone, Imuran, Plaquenil, Methotrexate, Cellcept, etc.
   
   It's tricky finding just the right combination and dosages that will work to keep most of the symptoms under control, but a good Rheumatologist who really listens to you and doesn't try to dose the disease into submission, but uses minimal dosages can work it out with you. It takes time -- even with my terrific Rheumatologist, it's taken nearly 3 years to make my condition stable so that I can often lead an almost normal life. The first year saw me either in the hospital or ready to give up every day. The second year didn't involve any hospital stays, but the fear and depression and excruciating joint pains were still there. This third year has been one of gradual improvement -- no Prednisone for 6 months! Plaquenil and Cellcept are now keeping things steady.
   
   The joints are stiff and painful, but I can use them fairly well again. With no big flare-ups, I find that exercises in a heated pool are allowing me to build up some muscle strength again so I feel better all around. Regular acupuncture treatments have, for me, made a difference too. Massage and chiropractic treatments didn't help, but Reiki therapy did help with energy levels and meditation calms the despair and fear. Try everything you can, simultaneously. Medication is only part of the solution.