Discussions By Condition: Muscle conditions

Mctd

Posted In: Muscle conditions 88 Replies
  • Posted By: Anonymous
  • May 17, 2006
  • 06:33 PM

I have recently been diagnosed with MCTD. I was wondering what successes anyone else might have had with the treatment of mctd. I have tried the anit-malarials without any luck.
I currently take NSAIDs to control swelling and pain in my hands and feet, but nothing I have done is making my symptoms any better.
My doctor wants me prescribe methotrexate, but I am a little apprehensive about that.
Any suggesions or help would be great.

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88 Replies:

  • Hi, I am afraid I won't be of much help, because I too have just had a recent diagnosis of this disease. I spend everyday in a fair amount of pain. I am presently taking ultracet (non-narcotic) but truthfully, it doesn't seem to do much. I have an appointment with my rheumatologist on Monday. I am getting to the point where I want to discuss some medication. She had mentioned plaquinil at one point so maybe I will try it. I seem to have what I call 'episodes'. I am pretty much in pain all the time but sometimes it gets so bad, I can hardly move. I guess this is going to be an adventure. I will be interested to hear about your journey. I will be glad to share mine if you like. Good luck.
    Anonymous 42,789 Replies Flag this Response
  • I was diagnosed with MCTD about 2 years ago. My original rheumatologist wanted to put me on prednisone to get the inflammation and pain under control, but I did not want that. Too many side effects. She put me on Plaquenil. So far it has worked for me. I still have joint pain and some swelling, as well as joint nodules, but it is bearable. There are so many symptoms associated with it. My predominant disease is SLE (lupus), so they are basically treating me for that. Good luck with treatment. One thing that has helped me is exercise - I try to walk at least 4 times a week or do weightbearing exercises. That has helped my muscles from deteriorating too much. I hope y'all's pain gets under control and you have more good days than bad.
    Anonymous 42,789 Replies
    • August 10, 2006
    • 04:42 PM
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  • I was diagnosed with MCTD 10 years ago. Since then i have tried Plaquenil, Prednisone, Methotrexate, Humira (Injections) and now currently Imuran (200 mg daily). I also have a sleep disorder (Restless Leg Syndrome) so between the two it is not fun. Every day is different, but I too have the joint stiffness, pain in different parts of the body and general feeling of tired flu-like symptoms. Lately i have been experiencing numbness in my right foot (toes and under arch) which i am guessing is Neuropathy. I have stomach problems also which i attribute to MCTD (recent GERD surgery). I can only say to all of you out there with this disease is it is crucial to educate yourself on the latest drugs and treatment available. I would love to hear from anyone who is also experiencing numbness in their feet and what treatment they are having for it. Hang in there everyone - thanks for listeningTheresa
    Anonymous 42,789 Replies
    • August 24, 2006
    • 05:59 PM
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  • I was diagnosed with MCTD 10 years ago. Since then i have tried Plaquenil, Prednisone, Methotrexate, Humira (Injections) and now currently Imuran (200 mg daily). I also have a sleep disorder (Restless Leg Syndrome) so between the two it is not fun. Every day is different, but I too have the joint stiffness, pain in different parts of the body and general feeling of tired flu-like symptoms. Lately i have been experiencing numbness in my right foot (toes and under arch) which i am guessing is Neuropathy. I have stomach problems also which i attribute to MCTD (recent GERD surgery). I can only say to all of you out there with this disease is it is crucial to educate yourself on the latest drugs and treatment available. I would love to hear from anyone who is also experiencing numbness in their feet and what treatment they are having for it. Also did you see your rheumatologist or a neurologist for the problem. Hang in there everyone - thanks for listeningTheresa
    Anonymous 42,789 Replies
    • August 24, 2006
    • 06:11 PM
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  • I have been on high dose prednisone for five years with average dose of 40 mgs and sometimes as high as 80 mgs. I have periodocly had my immune system wiped out and been hospatlized many times due to various organ failures and infections.At this point my skin is so thin that I cannot even play with my gentle dog and grandchild. I have lost my toes and much muscle mass. My face is round (cushings) and must take many medications just to manage the devastating effects of pred. This includes the fact that it has turned me into an insulin dependant diabetic.Thus I cannot warn you too strongly about the devastating aspects of this drug. If I had it all to do over, I would MAKE my doctor follow me more closely so as to take as very little pred as needed. Further I would have demanded that I also take methotrexate so as to lower the amount of prednisone needed.In short... be forwarned... Prednisone will kill you. Sometime faster than the illness for which it is prescribed
    Anonymous 42,789 Replies
    • September 9, 2006
    • 09:43 PM
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  • So sorry to hear you are having such a bad time with mctd. I did the prednisone route too for 6 months and other than gain weight did not feel any better. You speak about losing muscle mass - did doc tell you that was part of the mctd? i am assuming you lost the toes due to diabetes. I am in my 10th year of fighting mctd and currently take Imuran 200mg a day. i would like to cut back on it because of side effects. Hang in there - hope tomorrow is a better day.Theresa
    Anonymous 42,789 Replies
    • September 10, 2006
    • 03:52 AM
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  • So sorry to hear you are having such a bad time with mctd. I did the prednisone route too for 6 months and other than gain weight did not feel any better. You speak about losing muscle mass - did doc tell you that was part of the mctd? i am assuming you lost the toes due to diabetes. I am in my 10th year of fighting mctd and currently take Imuran 200mg a day. i would like to cut back on it because of side effects. Hang in there - hope tomorrow is a better day.TheresaActually I lost my toes as an indirect result of the Prednisone. I was on 80 mgs and had very little immune system when i got pneumonia. While in the ICU (3 months) my hear stopped and they gave me Levophed which is a drug given as a last resort in times such as those. Levophed concentrates the blood in the heart and brain but cuts it off to other areas (toes). Thus when I woke up they were black so I had to have them cut off.Now that I know A LOT more about Prednisone and MCTD (and related disorders) I would have changed doctors long before I was on such a high dose of Pred.However, My sister recently exhibits signs of MCTD and her doctor put her on Pred. (20 mgs) for three months until follow-up. After only three weeks her arms are already bruising badly. I figure that bruises are burst capillaries which means that deep tissue and organ capillaries are also fragile and being damaged. This at only 20 mgs. That shows ya, ya never know with pred. The damage varies from person to person.I have never taken Imuran. If it works for you perhaps I will look into it.BTW.... I did not have Diabetes before prednisone. While on lower doses, I got away with taking pills but once pred got above 40 mgs per day, I had to switch to insulin. Just one more drawback to prednisone.
    Anonymous 42,789 Replies
    • September 10, 2006
    • 07:31 PM
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  • I am 52 and totally frustrated because of all the weird symtoms this disease has. I took prednizone for 2 years. I had a really bad reaction with Imuran so now I am on Cellcept. My bloodwork shows good but the pain is still here and I have trouble walking, talking, and the use of my hands (to name a few.) Does anyone else feel like this is not real because it is such a strange disorder or disease and have trouble believing it is real and that it can't be controled with self discipline?
    Anonymous 42,789 Replies
    • September 11, 2006
    • 02:43 AM
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  • Hi I was diagnosised about 2 years ago with MCTD. I have been taking plaquenil and Imuran for about a year. Recently they upped my imuran and it seems like I have more bad days then good now. I am wondering if there is anyone who has been pregnant while taking these drugs? My doctor says it is ok to but reading the internet it says otherwise. Also I would like to find out how pregnancy was with MCTD on or off the medication. I would love the help if anyone can help me with this. Thank you
    Anonymous 42,789 Replies
    • September 11, 2006
    • 08:21 PM
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  • In response to suzieqwb - i am wondering what your exact change in symptoms are since upping the Imuran? also you did not mention how much you are taking right now. I do not feel any better on the maximum dose of 200mg - like you i have more bad days now with pain and fatigue. I have noticed a definite connection with the restless leg problem i have as well and the drug Mirapex - seems like if i miss a mirapex dose the mctd pain worsens . problem with mirapex is too much of it and you feel like a zombie all day. with regards to pregnancy and mctd i have read that it can worsen (symptoms) during pregnancy since there is a hormonal connection - i am trusting you have a rheumatologist that is prescribing the imuran and not the oby/gyn doc (sometimes they are not so aware of mctd complications) - hang in there and rest up - have to listen to the body and give in sometimes. good luckTheresa
    Anonymous 42,789 Replies
    • September 12, 2006
    • 03:26 AM
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  • Hi Katelyn - trust me you cannot control this disease with self discipline! One day you feel perfectly normal and think you are overreacting - and then a wave of fatigue and pain comes over you and puts you in bed for a few days - no you are not imagining any of it. I too am very frustrated at age 58 with this disease and just gave up a wonderful job because of it. Could not deal with anymore stress in my life from this disease so now just give in and do one day at a time. Have to try and stay positive mentally and make the most of good days when you get them. sorry to hear the imuran did not work for you - take careTheresa
    Anonymous 42,789 Replies
    • September 12, 2006
    • 03:34 AM
    • 0
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  • Hi Theresa,Thank you for your response. Since upping my imuran to 150mg a day I have had more fatigue and joint pain. I have also had more bad headaches. I'm not sure if it is one of those things that you have to get worse to get better. After reading this forum I really don't want to take predisone anymore. I have been winging myself off of it since he upped the imuran. I am down to 2.5mg every other day. I am seeing a rheumatologist about all of this. I haven't talked to my OB about having a baby on the medication. I was just hoping to hear from someone first hand about pregnancy with MCTD and being on medication for it. How long have you been on 200mg of imuran? Have you had any long term problems because of it? The cancerous and non-cancerous growths has me worried. I hope you have some good days ahead of you and sorry you had to give up your job. It is hard to give into this disease because I also want to enjoy the world we are living in. It definately is frustrating. :)Suzanne
    Anonymous 42,789 Replies
    • September 12, 2006
    • 07:43 PM
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  • Hi Suzanne - i have been on 200mg of Imuran for three months now (total time on Imuran is almost 2 years). I do not see any difference yet with the increase (more fatigue if anything). The Humira shots i was on were sooo expensive ($700 a shot) and i was getting one every two weeks. Only did that for 6 months since no improvement. My blood work shows this is the best i have been in 10 years but my body is telling me otherwise. Not quite sure which one to listen to. They increased the Imuran due to lung involvement (base of lungs are hardening from MCTD). I do not want to be on prednisone even though when i know i am going to be overdoing it (recent sons wedding) i did the Medrol pack a week before the event and that got me through that since it only last 2 weeks. You might want to give some thought to using prednisone that way (ask your doc) when needed. I did not take plaquenil for very long as it did not do much. Imuran takes a while to react in your body (3 - 6months) so be patient before quitting. I need to motivate myself and at least walk every day but that is sometimes difficult if you are experiencing a day of fatigue - i do belive exercise would help us though. Please continue to visit this site and let me know how you are doing. Positive thoughts :)Theresa
    Anonymous 42,789 Replies
    • September 13, 2006
    • 03:44 AM
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  • :)Hey, I don't want to sound selfish but doesn't it make you feel a little better that we are all in this together? We are not making things up to get out of things we don't want to do; we are not hypocondriacs, we have a strange disease that is different in each one of us and even the symtoms that are the same the treatment may not be the same. Those that don't have this disease have no clue and although they love us and try to help, since our symtoms change from one symtom to another so fast we can't even tell them what we need. Thanks for letting me soundoff. ;)
    Anonymous 42,789 Replies
    • September 14, 2006
    • 03:20 AM
    • 0
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  • Kayelyn you can sound off any time you want! I get so tired of people telling me how great i look and saying "you would never know there is anything wrong with you" - they don't see me try to open a jar or a bottle of water! Just have to keep thinking those positive thoughts i guess. :)Theresa
    Anonymous 42,789 Replies
    • September 14, 2006
    • 03:36 AM
    • 0
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  • I am taking Cellcept, Celebrex, Gabapentin, Hydrocodone, and Cymbalta. I was on Prednizone and Norvasc (for Raynaud's) for two years and just got off them. I was on Plaquenl until they found the polymyositis and then they took me off that and put me on the Imuran and it affected my liver so that is why they put me on the Cellcept. It seems like when the blood tests show less inflamation I have more pain. I try to stay out of the sun because of the warnings but it also makes my hands swell up and get all red. I have never had the butterfly rash that they keep referring to on my face but it shows up on my chest??!!It dosen't seem like the doctor's understand what to do for this disease. They have even said how healthy I look; how nice, tell me how healthy I am not how healthy I look. Maybe they are trying to be encouraging but I am concerned about what this disease is doing on the inside. I have shortness of breath and my hips give out easily. I can't get out of the bathtub myself anymore. Somedays I can't type because my hands are too swollen. I am now trying aqua therapy and while I am in the water I have less pain. Actually I feel normal again when I am in the very warm pool. I would suggest it for others that are in pain. I am curious what exercise other people do. :rolleyes:
    Anonymous 42,789 Replies
    • September 16, 2006
    • 05:52 AM
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  • Katelyn - sounds like you have run the gamut with the drugs like I have. Sometimes I wonder what would happen if my body took a holiday from all of them for about 3 months just to see how i would feel. I am surprised that they still let you take Celebrex since it came off the market - the only one that helped me with the pain was MOBIC - problem was it also made my stomach bleed. I don't have the butterfly rash either. Seems like it is a case of trial and error with the doctors - the minute a new drug comes out they want you to try it - feel like a guinea pig sometimes. As far as exercise I prefer walking outdoors - i have found if i listen to music when i walk it helps and i am able to walk further (distraction i guess). I too cannot deal with the sun and try to stay covered when possible. Two years ago this disease started affecting my lungs (interstitial lung disease). Catscan shows hardening in the base of the lung along with shortness of breath and a cough. That is when they upped the doseage of Imuran. I am wondering if has anyone tried acupuncture ?
    Anonymous 42,789 Replies
    • September 16, 2006
    • 06:44 PM
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  • I know execise helps me but my biggest problem is.... I wake up feeling good with all the best intentions to exercise that day. After working I barely feeling like cooking dinner. Or you wake up so sore all you want to do is stay in bed. I do make myself get up and go. It does help some at least emotionally. I have tried water aerobics and walking. Like them both but prefer walking. I have wondered about weight lifting to strength my muscles but just with my daily work( I work alot with my arms) they are all so tight and sore that I wonder if pushing them more would do to me. One thing that helps me is I see a chiropractor on a regular basis and also a massage therapist. You need to look for ones that deal with pain management. This has saved me. I don't think I would still be working in my career if I didn't have these wonderful people in my life to get me through. I am glad I have someone to talk to about this. I know you all understand. Thank you. Acupuncture might help.... it's worth a try at this point. My father died of ALS 28 years ago and I know he looked for anything and everything to help him with his disease. Let's all keep smiling.
    Anonymous 42,789 Replies
    • September 17, 2006
    • 07:11 PM
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  • My daughter keeps telling me to lift weights - when i get a flare up it affects my arms a lot (feels like i have been rowing a boat for hours) I too have good intentions to walk more regularly, but by the time the pill wears off that i take for sleep (Lunesta) it is already midmorning! Just have to get up and get out the door i guess (easier said than done). I will try the massage therapist (sounds helpful) - thank you all for your input and ideas. :)
    Anonymous 42,789 Replies
    • September 17, 2006
    • 10:55 PM
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  • Hi everyone. Thanks for the interesting forum. I've never posted anything anywhere but I'm a 51 year old who was diagnosed with MCTD in May of this year so have been on-line alot. I spent a horrible summer of pain on just NSAIDs. I recently started Imuran (50 mg) so don't know if it does any good. I also take 10mg of prednisone (will try to lower that if the Imuran works). My current pain med is oxaprozin (600mg twice a day) which seems to work. My main problem is the fatigue and the never knowing what tomorrow will bring. I walked a bit on a treadmill yesterday and will try to keep that up as my usual strength training isn't possible, sigh. -- Stay strong everyone.
    Anonymous 42,789 Replies
    • September 20, 2006
    • 10:27 AM
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