Newbie with MCTD would love to hear from others

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freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 1/23/2008 11:38 AM (GMT -7)   
 Hello All-
I don't know if I am on the right forum, but I am trying to connect with people who have MCTD.
There seems to be so little info available on it, and especially info on people who are handling it
successfully. You input would be greatly appreciated

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 1/23/2008 4:44 PM (GMT -7)   
Welcome to the forum freename!!

YES! You've come to a great place to share and get encouragement. Lots of members here have Lupus . . . but there are also a few MCTD members.

I think you'll make some good friends here. If you post some specific questions or problems you are having, there are usually a couple members who will understand and give some suggestions on how to cope.

Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
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Date Joined Jul 2005
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   Posted 1/23/2008 5:00 PM (GMT -7)   
HI freename and welcome. Like Rosie said, we have members with lupus, UCTD, MCTD and people who are in diagnosis limbo. A lot of these connective tissue diseases share similarities in symptoms and treatment, so we can all relate to each other pretty well.

Please ask any questions you have and also know we are here for you if you are having a rough time and need some support. I'm glad you found our forum and I look forward to hearing more from you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 1/23/2008 7:28 PM (GMT -7)   

Thank you for both for your reply and encouragement. Although I have been diagnosed since Nov 07- I know very little about my bood levels anti-bodies etc.

I suppose my mind immediately went to what can i do to stop this disease from progressing, and I remain fixated on that. I do have wonderful Doctor's

who are extremely supportive (half the battle I hear from others), and am currently on medication (prednisone 15mg initially then on a declining dosage, and Plaquenil 400mg first month and now down to 200 mg since). I felt like wonderwomen the first week of prednisone, but have noticed more and more aches and pains while declining. Currently I am on day 2 of 2.5 mg Prednisone, and I feel awful. My arms ached and were numb all night and most of the day. My hands and wrists joints are aching. I have heard that Plaquenil takes awhile to start working, and am wondering if it is still early for me to feel the effects of this Medication (started Nov.21/07), or are these problems I am experiencing happening with the plaquenil working.

Hearing others experiences is welcomed

Freename


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 1/23/2008 7:47 PM (GMT -7)   
Hi Freename,
 
Welcome to the forum!  I'm sure you'll learn a lot from us and us from you! Lupus and MCTD are so similar.  They're medicated the same. If you don't mind me asking, which disorders do you have?  There are a few of us here MCTD, so you aren't alone at all.
 
Your dose of prednisone is very low!  That might be why you're feeling so crappy.  If you felt better on a higher dose, I'd let your doctor know. They might keep you at a higher level until your plaq really kicks in.  Which should be soon according to when you started taking it. 
 
I am currently on 8.5mg of prednisone and 100mg of Imuran.  Those are my two "big guns"!  I'd love to get down to 2.5mg of pred.  I used to be on that dose back in 2003/2004.  It was wonderful. I was skinny..... Hahaha....Oh well.  Things change!
 
Looking forward to talking with you more,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 533
   Posted 1/23/2008 10:34 PM (GMT -7)   

Hi Freename,

 

I am one with MCTD.  I was diagnosed about 3 years ago.  I have only taken pred one time and only for a week because I have high blood pressure also and my rheumy doesn't want to mess around with that.  I know it is hard to find specific info about MCTD but basically it is treated just like Lupus.  I take plaquenil and also am taking methotrexate for it.  I take Vicodin for pain when it gets too bad.  I am also diagnosed with 'fibromylagia which adds "interest" to the whole experience. 

You have come to a great place to get info and encouragement.  Everyone here has been great with me and very encouraging.  I know that there is one man, named Bill, who has quite a story about MCTD.  Hopefully, he will share with you his ordeal and successes.  Please ask questions and we will try and help as much as we can.

Take care,

Mary Ann


 
** MCTD,Fibromyalgia,Raynaud's June 2005
**Sleep Apnea - February 2006
**Pulmonary stenosis, High blood pressure, IBS, degenerative disc disease, vertigo
**Meds:  Plaquenil, MTX, Lyrica, Folic Acid, Metoprolol, Lotrel, Vicodin
 "No matter what happens, God is in control.  He is God, I am not, what a relief!"


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 1/24/2008 6:46 AM (GMT -7)   

Hi Ginny and Mary Ann-

I too have fibromyalgia. I was diagnosed with this in 1997 and always managed well with it, and actually when I started to get sick a year ago, my GP and myself thought it was the fibro kicking in really bad, but by the spring my bloodwork was revealing alot more. My diagnosis is Lupus, Scleroderma, and polymyositis. The main problems I have are upper body(especially arms) aching, and numbness. Wrist and finger joint and knee pain. Also, I tend to get an eczema type rash on the index finger of one hand, and a red patch over the knuckles of the other. As I mentioned when I took the 15mg of prednisone I felt great, and even functioned extremely well with 7.5 mg.- My pain really started coming when I got down to 5mg. and like I said I feel awful now on the 2.5 mg. My Rheumy told me my case was mild and he expects that by the end of March I will feel as good on Plaquenil as I did on the 15mg of Prednisone. When  I started feeling like I was hit by a bus, I got online and googled plaquenil and mctd, and I was directed to the posts written by "Bill"- and others and I knew this is the place I wanted to be. You see I have tried desperately to find info, support groups etc on this disease without having to hear constantly about the doom and gloom. I need encouragement, and really want to converse with people who are optimistic, and learning to live well with this.

Thanks

Freename


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 1/24/2008 8:16 AM (GMT -7)   
Hello again Freename,

I sure don't want to overstep by contradicting your doctor . . . but I wonder why he lowered your dose of plaq.

Unless you are a tiny girl, most of us take at least 400 mg and that would never be lowered unless you had no symptoms for a long period. Plaquenil is rx'd by weight so, a larger person would sometimes take even more. I take 600 mg and have a fairly mild condition (no organ involvement). My issues are similar to yours w/o the finger rash.

When tapering down on pred . . . the rate at which you decrease the pred is extremely important. Once you are under 10 mg, it is lowered bit by bit or the body doesn't have a chance to start making its own cortisone again. Maybe Ginny or Lynnwood could give you a sample of that taper.

There are some posts in a topic titled "Lupus Resources" that may be of interest to you. The link is in my signature. There is one post with suggestions for new members that might be very helpful.

I hope you know that the sun can cause a flare. Most of us have to stay covered when we are outside and even at that, we limit our exposure to the sun.

It really does take several months or more to figure out the best combination of meds and lifestyle to get your disease under control . . . so do be patient . . but if your disease process is escalating, I would wait till your next doctor appt to let him know you are in trouble again. Just my opinion.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 1/24/2008 9:11 AM (GMT -7)   

Hi Rosie

No, Im not a small girl (5'7" 190lbs)- I didn't realize about the Plaquenil (I really am a newbie). His complete RX was Plaquenil 400mg for 1 month then 200 mg thereafter; Prednisone was 15mg for 1 week, then 10mg for 2weeks; then reduced by 2.5mg every 2 weeks. Thank you for the link, I am going to look at it now.  I did know about the sun, and actually I am fair, so I have never really been able to handle it anyway.

I do have a call into my Rheumy and expect to hear from him today, so hopefully one of these meds will be increased. I do have a question though-do the majority of people have successful results with Plaquenil?

 

Freename


AlwaysRosie
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Date Joined Jan 2005
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   Posted 1/24/2008 10:43 AM (GMT -7)   
The plaquenil is most always the first med. It is sometimes very hard to know how well it is working because it takes so long to build in your system (6 months or so). By the time it is working effectively, we aren't sure if the plaq is helping, or another med, or if we are in remission. Most of us have tried stopping our meds, including plaq, only to find ourselves in a severe flare. Thats when we know that we really need it.

I have stopped using it twice for extended periods. BAD idea. I had a really bad flare one time and a decent flare the next. Both rheumy's I've been to have told me that I must never go off of it. I really don't have a Lupus dx. I'm UCTD. I was dx'd with Lupus by one doc and then undx'd by another as my bloodwork is fairly normal. But I do have the mouth sores, malar rash, sun sensativity and bad rashes from the sun as well as disease progression from the sun and several lupus symptoms. So, I allowed myself to think I really didn't need the plaq. Anyway . .. back to your question. . . YES most of us take plaq and most of us are much better off for it. It does the most with the least side effects. Make sure you get your eyes checked if you haven't already and keep your eye appointments so you'll know if you are one of the very few who have an eye problem with the plaq.

Raising the plaq is much safer than staying on prednisone. I take plaq (600 mg) + round the clock anti-inflams (rx ibuprofen right now). This combo has does a good job and then if I flare, I do a pred taper.

You'll probably do much better after you and your doc establish how much plaq you really need . . . but you'll likely also need some type of anti-inflammatory.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Bsime
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Date Joined Apr 2006
Total Posts : 1298
   Posted 1/24/2008 10:09 PM (GMT -7)   
I have mctd and had a very severe case.  My lupus symptoms were bad, scleroderma was minor, but polymyositis was the worst and took 40 lbs of muscle mass in a week.  2 years ago I was totally crippled and spent several months in hospitals.  Most cases are not as severe as mine and every case is unique in its' presentation and response to treatment.
 
What are your symptoms?  Aggressive treatment is important and most of us with mctd are treated initially with prednisone...typically 60mg per day.  Another med like imuran or methotrexate is usually added so that prednisone can be tapered over time.  Meth and imuran take many months to become fully effective so pred and another med are usually given at the same time.  Most people will tolerate long term use of those meds better than prednisone which can have both minor and serious side effects.  plaquinel is not usually given for mctd but is more common for those with only lupus. 
 
If you are not responding to treatment well I would seek a second opinion but make sure you find a clinic or rheumy that has experience in treating mctd or myositis diseases.  Treatment is more art than science and each one of us is different.  I had 3 rheumys treating me when I was near death and in real trouble.  Even today, I still see 2 of them (they collaborate so there is no conflict).
 
My case was the most severe one I have heard about but I have also rehabilitated as successfully as anyone.  I have returned to an active lifestyle although I do not have the strength or stamina I had 3 years ago.  2 years ago I was a quadriplegic who could not swallow and had little hope of every walking again...today I am skiing again and leading a fairly active life.  I have not had a single relapse once the docs got my case under control with gamma globulin (ivig).
 
If you have specific questions feel free to ask them.  There is another forum that focuses on myositis diseases and there are many with mctd on the forum.  It is www.myositis.org
 
Bill
 
 


Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 1/25/2008 7:22 AM (GMT -7)   

Thanks for posting Bill-

As mentioned earlier it was reading your post while googling that brought me to this forum. Your story and attitude is truly inspirational. As for me, my symptoms initially were upper arm, shoulder girdle aching; numbness in lower arms and fingers; painful knees (couldn't bend them without severe pain); swelling of fingers and between knuckles; painful wrists; rash on finger and knuckles. Within a few days of going on 15mg Prednisone and 400mg Plaquenil, I became symptom free. As my dose of Prednisone was reduced I slowly started feeling aches and pains here and there, but it wasn't until my dose was reduced to 2.5mg that I felt terrible. Regarding my Rheumy, he is my second and actually I found him through a search. He is the head of Rheumatology for a network of 3 big hospitals in Ontario, and Head Scientist for Arthritis and Autoimmune Research Foundation. Plus he is a Professor at a major university, so I have always felt I am in great hands.  I didn't realize about the Plaquenil and meds that are used for MCTD- perhaps there is something else going on with me that I am not aware of as I have admitted that I don't know much about my bloodwork and different antibodies (but I see now that I must learn and be very aware).

I have gotten an appointment to see my Dr. on Monday, and thankfully I did have the sense to record my symptoms on a daily basis as they really do change (Tuesday and Wednesday I could hardly move and last night and today I am pretty mobile with tolerable aching and stiffness).

Bill, a question I would like to ask you is how did you help yourself heal? A recovery like yours must of taken alot more than medicine. I can see that you are a "glass half full" person, but how did you maintain this positve energy when you were really sick? Myself, I am determined to heal, and am prepared to do whatever it takes to do so.

Thanks

Freename


Bsime
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Date Joined Apr 2006
Total Posts : 1298
   Posted 1/25/2008 7:42 AM (GMT -7)   
Freename,
 
I wish I could tell you a magic formula for recovery but I can't.  In my case, I mentally drew a "line in the sand" and said that I wanted to survive.  At the same time I said that I was willing to do whatever was needed to recover.  Of course, I had no idea what that meant at the time but having the will to do it is the most important thing.
 
Early on I said I wanted to return to my life passions....skiing, hiking/climbing and golf.  There are so many other positive things in my life...wife, sons, grandchildren and they all helped but those other things were instantly gone and were ingrained in my life.  I used them as my beacons.
 
At the time it seemed idiotic, insane that I would ever ski again.  Walking seemed an impossibility.  So I set much more humble goals when I entered the rehab hospital....stand, reach, and swallow were my goals.  I had another set of goals that I set each hour....whatever the task at hand was.  If I had not done that I could never have "climbed the mountain"....it was too daunting.  But taking it an hour, a step, at a time was the approach that worked for me. 
 
I was not foolish and tried to both push myself and also respect that I had an extremely limited amount of physical and emotional energy.  To this day I still practice this discipline.
 
Also had a roommate in the rehab hospital who was as motivated as I was.  We were different personalities and had different auto immune diseases but we were both crippled and wanted to return to a normal, or more normal life.  We fed off each other and are friends today.  Unfortunately, my friend is still partially crippled but he is doing OK.
 
Setting goals, NOT setting time goals, being persistent and prudent all will help you to recover.  Expect setbacks....they will happen.  Be realistic...it is OK to have your ultimate goals and you might reach them...or you might not.  I am no where near my ultimate goals after 2 years but my doctors and therapists did not think I would walk at first.  Now I am skiing, playing golf and planning a hiking trip.  Somewhat of a wimp still but life is good again despite its' limitations.  Maybe it is easier for me to accept that there are limits due to my age.  However, I still feel I have not found my limits and it will take another 1-3 years to find my recovery potential.
 
That is my recovery story in a nutshell.  No magic formulae but just lots of effort and a stubborn belief that somehow I can recover and return to normal.
 
Hope that helps.
 
By the way, if you have severe disability it helps to have great rehab docs and therapists and I did.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 1/25/2008 7:49 AM (GMT -7)   
Hi Freename . . . I wouldn't discredit your doctor yet. It takes a real "dance" to figure out just how much and how many meds you need to function and heal. But you do need to let him know when you start a downward spiral because you can really lose ground fast. If you call him today and get the pred back up to a helpful dose, he can re-assess you on Monday. Sometimes they lower the meds to see if you were just in a little hickup of a flare, or really needing the pred. After you understand how pred works and you know how to balance the good with the risks, he may put you more in charge of dosing. But he can't do that until you've had a chance to learn.

Also make sure you ask him about a good calcium supplement. The pred can really strip your body of it and takin supplements now rather than waiting for bone loss is key.

I hope you'll keep us posted!!! And I'm so happy today is a little better. Rest is really important too. We heal in our deep seep which requires at least 4 hour solid sleep. If you aren't sleeping well that will hinder recovery and if you are sleeping well, you will likely notice improvement. As you are healing, DO NOT use your energy to do unnecessary things. Take care of your personal needs and leave housework for a better time or for another family member. We take care of things that "stack up" (laundry and dishes and picking up around the house) the rest is no more work if you leave it till later (vacuuming, dusting, sweeping, floor washing).

Make sure to read the posts in Lupus Resources (link in my sig) if you haven't already . . . you might find some help there too.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 1/25/2008 10:38 AM (GMT -7)   

Thank you Always Rosie and Bill-

I realized something after I posted this morning and that is I had given the wrong Mg of Plaquenil. I was iniatially on 600mg for 1 month and now am on 400mg (not 200 as stated) daily. I am on other medication too, so I guess that is part of my mix up. Unfortunately sleep is a problem for me and since last fall I have suffered both anxiety and depression. Actually, I believe that these have been a major cause of my illness to begin with. Currently, I am on Ativan, Imovane (Ambien in the US?), and wellbutrin (anxiety, sleep and depression). Im not giving up on this Rheumy, in fact I have a trust in him (something I didn't have with my previous one), and from reading different posts I can see that proper treatment and dosing really is an 'art'. I too, have a strong will to recover, and a deep belief that we are capable of healing. When I look back at the physical symptoms, I can actually relate each and every manifestation to stressful events in my life, and although I'm not thankful for this illness, it has made me realize that I need to heal alot more than my body. I am 47 years old, and this truly is life altering. For the first time in my life I am seeing all the blessings I have, rather than b****ching and complaining about what I don't have, and I have a new respect for anyone dealing with terminal disease. I feel like I do have a chance at a full, rich life (and Bill your posts encourage that for me), and am learning to accept that if this is what I have to deal with, then I can do it.)

Oh and I am not disabled (just alittle slow when I'm in pain).

I really want to thank everyone for your responses. You are giving me a crash course in learning to be responsible for myself and my health.

Freename


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 1/25/2008 11:35 AM (GMT -7)   
Sounds great Freename . . YES! this forum is great for developing a good attitude and "most" of us have developed that sense of dealing with it.

Your sleep: YES! huge issue. There are some great techniques for better sleep. I use warm grain bags at night (I put them in the freezer in the summer and use them cold). Mine are filled with whole kernel feed corn, but you can use rice). If you don't sew, you can use a man's tube sock and fill it about 1/2 to 3/4 full with corn, dried beans or rice and stitch the top shut, fold it down about an inch and stitch again. If you do sew, you can make some pretty ones with scraps of upholstery fabric. Lots of members use an electric blanket or an electric bed pad. The warmth induces some good sleep for most and isn't adding another med. Aroma therapy can be helpful too. I love lavender. There are methods of quieting your mind, such as using the alphabet to count your blessings from A to Z. If I get to Z, then I start over and name animals, or people or places. I have never gone thru the alphabet twice.

Sending you some sleepy dust and hoping your sleep improves. It really will help your health a lot.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 1/27/2008 8:37 AM (GMT -7)   

Sorry I didn't see your post earlier Always Rosie-

 

I do have a bag with some type of beans in it and will give it a try. I find that I can dose off to sleep, but am up several times a night and often

only able to get 4 hours sleep without waking (and so often waking with anxiety). I do want off the sleep meds and wonder if anyone has had success with natural products (eg melatonin and 5 HTP).

Freename

 


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 1/27/2008 10:22 AM (GMT -7)   
I was diagonse two weeks ago with connective tissue Dermatomyositis I was diagnose with discord lupus 20 years ago now have sle been on plaquenil. Also a lot pain never been without a rash. Iwent to a new R.A. Doc. she put me on celebrex, flexeril. She refered me to lupus derm. that's how I found out about my problem she put me on quinacrine It is a compound I can only get it at U.Penn hosiptal. She took pictures of my face,hands, elbow, see her again in march. Idon't know to much about it yet but I hope this will help a little. Wish you well.

emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 1/27/2008 9:17 PM (GMT -7)   
Welcome, Freename!

I, too, am up several times throughout the night either from pain or to use the bathroom. The best medicine I have found is buying some CDs that I find very calming and relaxing. I put them on my alarm with CD player, set it to repeat again and again. I pray, do deep breathing and then let myself float away on the music. The good part is that when I come back to bed, the music is still playing and helps me get back to sleep. This works very well for me most nights.

I am now addicted to those things in the stores that allow you to listen for a few seconds to the CDs!

HTH,

emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 1/29/2008 12:13 AM (GMT -7)   
Freename,

Prednisone can cause problems with sleep, but you're on a pretty low dose so I don't know if that's what's causing your sleep problems. I'd be sure to mention this to your doctor. As for plaquenil, yes, I believe it benefits most people. I don't feel any effects from it although it did take about three months for my stomach to adjust to it, and my rheumy tells me that I'll probably always take it.

I'm glad you're here and I admire your positive attitude. That will take you far in your recovery.

Pat.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 1/29/2008 7:15 AM (GMT -7)   

Hi Everyone-

Thanks again to those who have posted for me- I appreciate all responses and suggestions. I saw my Rheumy yesterday, and is putting me back on Prednisone starting at 10mg for 2 wks and then I will be doing a slow decline (overall 20 wks to get to zero).  He said that the Plaquenil should be working by then.

As for my sleep issue, it was here long before my symptoms. I really do believe that the chronic stress and anxiety I lived with really ignited this illness, so my plan is to deal with the root issues that are the cause. Thanks for your comment PattyLatty about being positive- it's funny cause I was never a positive person about many things, but I have learnt at different times in my life that when things happen that I don't have control over, or I get overwhelmed with problems, and I feel I am at the bottom-if I just let go I somehow find this deep inner strength, and then things start working out. What I don't understand about myself is I can name off all the times this has happened, and yet my habit is to try to ' write the script' and fret and fume. Now I am trying to get that ability to 'let go' on a daily basis, and allow my life to heal. Definately going to be a long process though, but like I said I want to live and heal, so I will do whatever it takes, medically, physically, emotionally and spiritually.

One of the first things on my mind is to wean off the sleep aids, and try some of the suggestions given.

Thanks again for your caring, and blessings to all

 

Freename


MsKay
New Member


Date Joined Mar 2009
Total Posts : 4
   Posted 3/17/2009 5:04 PM (GMT -7)   
Hi Everyone! I'm new here and am just finding out something is going on due to a positive ANA. 1:320 through primary Dr after being sick and tired of aching all the time and just generally not feeling well. My weight is in normal range and I have always been pretty active but don't really exercise regularly. He sent me to a Rheumologist who did more testing. Out of those tests I had a positive AntiRo SSA and a positive Anti RNP. Still don't know what much of it means and am here to learn a little more. Of course I said what do I have.....wrong question to ask I discovered. The Rheumotologist wants me to go to a Opthamologist as he believes I may have Sjogrens and he said I also have MCTD but of course I've learned it takes a long time to figure out exactly what I have and he can't tell me yet. ugh... He told me I will be seeing him every 3 months and more will come to light. I have to go for a 2D Echo next week on my heart to check for pulmonary hypertension ( I've always had fairly low blood pressure? ) and after I see the eye Dr. i may be put on plaquinel. Medicines scare me, does anyone know what it does. I'm not even sure if I am spelling any of this right but I'm hoping I can learn on here. MCTD do run in my family. Mom and sis have RA and Mom has Non Hodgkins Lymphoma ( Walderstren's Macroglobulanemia) Thank you in advance for any advice.

freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 3/18/2009 6:30 AM (GMT -7)   

Welcome MsKay

You will undoubtly get good info on here as there are sooo many experienced and well knowledged people that post. Personally, I am still one of those that doesn't keep track of my levels and I know that perhaps I should, but I just seem to feel better being proactive and going by how I feel daily. When I have bad times I am at the Rheumy's and getting checked.

I too have been terrified of the different meds, and plaquenil scared me because of a prior eye problem I have (toxoplasmosis and cataract). I go to the Optomolgist every 6 months and do a weekly test at home. I have been told that problems from plaquenil can and do exist but is more than rare than the norm. Of course my Dr.'s are more concerned with the Prednisone which I am tapering again, and although I didn't gain weight from it, I'm starting to get the symptoms of Cushings syndrome from it (I will be finding out more next week), so of course this is making me more determined to get off this med. 

I'm like you and have always had (and still do ) low blood pressure, but my Rheumy did initial tests just to see if any organs had been affected. The first year had been a real roller coaster for me. Aside from going from feeling physically awful, to great then to awful again, I had major emotion issues with accepting my diagnosis. The worst thing was that I was identifying myself with my illness. I'd wake up everyday and remind myself that I was sick, and this was not what I wanted to do. It is hard but I am doing everything I can to detach from the label, and things are working well for me. Yes, I still get stiffness etc. but I am determined and optimistic. My Rheumatologist was amazed at my improvement on my last visit. He is a Scientist, but believes (as I do) in the mind body connection. Actually during my first visit after he did tests, he asked me what had been going on in my life at the time. I was floored because I had been through a devasting 2 years. He wanted me on anti-depressants and to go for counselling. Both these have worked great for me.

Anyway, I am babbling, but reading the stories on this forum and getting advice for the one's who have been there is such a blessing, so keep posting.

I wish you the very best and my prayers are with you

Liz


twinkiet
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/18/2009 8:45 AM (GMT -7)   
Hi Mskay and Liz,

I have been recently diagnosed about 45 days ago after a few months of testing and losing my son spontaneous at 28 weeks. I feel like crap too. Sleep is hard to come by without Ambien, which for some strange reason has started me sleepwalking lately. It kind of freaks me out because I live alone with my cat and I am afraid of wandering off somewhere. My nephew was staying with me for a while and he brought the sleepwalking to attention last week and I have been really paranoid now when I go to sleep as he is no longer there. I need to find new rhemy but not sure where to even start. Not only do I need a new rheumy, I need a whole new battery of drs because I am truly upset that my son is gone and for months they could not tell me why. I beleive they are just making up stuff. The rheumy and OBGYN seem to disagree on the connection with MCTD and the lose of my child. I have yet to recover from it. It happened in October and some days I am really ok, and some days I am really not, like today, it is 5 months ago today that I went to the dr with some minor cramping and they told me my son's heart was beating. Every month around the same time, I get really depressed and weepy. Coincedentially, I also ALWAYS now have period on the 18th of the month as well. I am sure there is some really weird satanic connection to the too. My period has been crazy since my son died as it comes twice a month, sometimes every 14 days, sometimes every 21 days. Does anyone know if there is any connection to the MCTD? I feel extra crappy when my period comes. My body hurts so much more. Today my hands are puffy, red patch over my knuckles on one hand, back,legs, pain in left wrist and back of left knee is killing me!

Sorry for the rant, just one of those days....

MsKay
New Member


Date Joined Mar 2009
Total Posts : 4
   Posted 3/18/2009 6:38 PM (GMT -7)   
Thanks for reply Free and Twink, Just knowing other people are going through the same thing are replying to you is a good feeling. I listened to my husband trying to tell his mom what was going on "she is 83" and it was really kind of weird because he didn't make any sense to me! His mom was saying "what does she have?". And he was saying "well we don't really know but....she has to have this test and that test and then maybe somethings can be narrowed down ". Anyways as I go to the dr. I will post and hopefully all of you can help me understand a little more. Maybe someday I can help someone out here like me that has NO idea what is going on yet. This is so aggravating......but I was very happy to see a reply. It did make me feel better. I don't feel so alone. Thanks!
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