MCTD, Lupus, Raynaud's phenomenon, inflammatory arthritis

My name is Raquelle I just joined today. I'm 22 years old and I was diagnosed with Raynaud's phenomenon when I was 18 yrs old. I've always felt like out of everyone in my family I was prone to being sick. I was always aware of having a weak immune system I just never thought I would've developed some of the things I had. I suffer from terrible allergies that seems to have progressed since I was 18 and I'm on medication twice a day for and also I can't live without eye drops. Last year, December 6 I was unfortunate to be stricken with Bell's palsy for about three weeks . Around that same time I was tested by my rheumatologist for blood work and it came back with positive results for MCTD. I was suffering from bad bilateral joint pains in my shoulders both elbows, my right knee and back pain. He said I have juvenile inflammatory arthritis and my symptoms mimic lupus. I just want advice because sometimes I can't cope and I give up on taking my meds because u take 7 pills a day and it takes a toll on me. I can feel the depression in my heart and I wanna cry from the fatigue and severe inflammation especially in my shoulders and back. And about 2 months ago I did and MRI because I couldn't bend my back and I have two herniated discs which are causing me he'll. I just need to reach out to anyone who knows anything about these conditions or how to cope. My mom is my support system but I feel very alone sometimes and I get overwhelmed and stop taking my medication for months at a time. Please any response is greatly appreciated.

You're welcome to post here, also there is a RA forum in another section here.
My family is my support system as well as here. Is there also a local support group in your area for more face to face if needed?

Lynnwood is right about stopping medicines. It's very dangerous without the doctor helping you.

I understand the aggrevation and frustrations of too many pills. There are times where I just get so tired of my medicines I just want to flush them down the toliet. However, I've learned that these medicines are helping me and without them I would feel so much worse.

Just get yourself into a habit of taking them. One suggestion you can pretend they are bullets you're firing at your disease. (:
Say, "Take that! Here's another! Leave me alone!" Cuss at it, yell at it....

Or if you want to go on a more heroic stand....
"Plaquenil to the rescue! Tramadol going pound that pain!" (O:

Got you smiling yet? (:

Find your stand to fight against this disease! Don't let it win or claim your identity. You are more than your disease.

There's this little old lady who goes to my church. She has RA so bad her fingers and toes are all narled up. Her feet are deformed from it too. But she lives by herself, she drives, and walks without assistance. She fights! I pray for just half of her gumption.

You hired your doctor if you feel he's not doing his job then fired him and find another one who will help.

couchtater said...
You're welcome to post here, also there is a RA forum in another section here.
My family is my support system as well as here. Is there also a local support group in your area for more face to face if needed?

Lynnwood is right about stopping medicines. It's very dangerous without the doctor helping you.

I understand the aggrevation and frustrations of too many pills. There are times where I just get so tired of my medicines I just want to flush them down the toliet. However, I've learned that these medicines are helping me and without them I would feel so much worse.

Just get yourself into a habit of taking them. One suggestion you can pretend they are bullets you're firing at your disease. (:
Say, "Take that! Here's another! Leave me alone!" Cuss at it, yell at it....

Or if you want to go on a more heroic stand....
"Plaquenil to the rescue! Tramadol going pound that pain!" (O:

Got you smiling yet? (:

Find your stand to fight against this disease! Don't let it win or claim your identity. You are more than your disease.

There's this little old lady who goes to my church. She has RA so bad her fingers and toes are all narled up. Her feet are deformed from it too. But she lives by herself, she drives, and walks without assistance. She fights! I pray for just half of her gumption.

You hired your doctor if you feel he's not doing his job then fired him and find another one who will help.

Thank you that did make me smile I guess my depression worsens it because it doesn't give me the ability to cope. But thank you for your kind words they will stay with me and I will keep them in mind everyday when I even think about not taking them. I'm really new to this so I'm going to looking around and reading other post for motivation and guidance.

I understand the frustrations of so many medicines. Sometimes I look at my pile of pills every morning and sigh...Then I start popping them in one by one.
I feel fortunate I don't have a huge pile of medicine- just 16. :P
I use a makeup case to carry my meds in plus a pill dispenser to keep track of if I took my medicines that day. I'd forget if I don't use it.

My brother whose in end stage renal disease has to take 7 large (I do mean Large!) Phosphate binders at every meal! Plus many others along through out the day.

Bsime said...
Raquelle,
As others have said, do NOT stop taking your meds on your own. The classic definition of MCTD includes symptoms of SLE lupus, scleroderma and polymyositis but the actual symptoms can be different. That does not mean you will get symptoms of all but it is possible. Rheumatoid arthritis sometimes is part of this overlapping disease but joint pain can also just be osteoarthritis. There can be various secondary conditions with this like raynauds so MCTD can be quite complicated but it can usually be treated successfully but not if you do not have the right meds and/or don't take the meds.

I am ONLY taking about 17 pills a day (many are various supplements) and that is about half of what I took 7 years ago when this started. If your current doctor is not experienced treating mctd or lupus or myositis diseases it might be worthwhile to get a second opinion. Aggressive treatment is important to get your immune system under control and not make your symptoms worse.

Initially, mine was out of control but eventually was brought under control and I have been in remission for almost 7 years. There is hope but you will have to learn patience at an early age. If there are any lupus or myositis support groups in your area I would suggest that you and your mother attend. It can help to talk to others who have experienced what you are going through. Those with lupus go through almost the same as someone with mctd since lupus is a big part of the overlap disease.

Bill

Thank you Bill I will definitely look into that I think my main thing is needed a support group because I think that when I get depressed I somewhat burden my mother. She's the best support I have but I need to reach out to orhers because I don't cope well with pain or depression and when I'm alone and can't vent I over think a lot of my problems and make it worse then what it might be. I can say I have been steady on my pills for the first time in months and I'm really going to try to stay that way. I'm from NYC so I'm sure ill find some support groups somewhere because I think I need it. Thank you :)

Bsime said...
Google lupus support groups NYC and you will find several organizations listed that have meetings in different locations. The important thing is to find an active group and you will find all sorts of support. You will also hear some depressing things because everyone struggles with lupus. In the group I attend there are several of us who have overcome tremedous problems and live a good life and help others to cope.

Good luck and take things a day and a problem at a time. Don't let things pile up on you....and take those pills.
There is an ancient African saying: "I was sad because I did not own any shoes, Then I saw a man who did not have any feet."

African Aphorism

Thank you. I love the quote . I'm definitely going to look into a support group. :)

Don't give up, you aren't alone.
I, too have had severe sinus allergies that got worse after my first deployment. I just dealt but after this last deployment and waking up with what I now have, the pill taking can be overwhelming. I know I am nowhere near the amount others are taking but my case is different. My RA and SLE hit me hard. I am fortunate that I managed to find a good rhuemo and the VA have finally gotten me in to see some very decent rhuemos. True to their nature, the VA re-tested me "just to make sure" about the first diagnosis and yup. I have RA and Lupus, they are also saying I may have developed Fibromyalgia. My "new" rhuemos are all about trying to get me into a less painful state since my lupus and ra seem to care less about their time tables of disease progression. There is no hope of getting me into remission. At least they are honest.
I marvel at the fact others can use the little pill carriers, I cannot. Apparently my lupus is affecting my brain and I have trouble remembering if I took my pills now. Since I cannot do much, my pill taking is kind of goofy. I lay out the pills on top of the bottles. I have certain times I have to take some and yes there are days that I have to fight myself. I've developed treating myself of having a cookie if I take them without trying to hold them in my mouth to the point where they dissolve. I've also made up games. weird but it works. Do not stop taking your meds and don't give up on yourself.
One thing I've learned this past year is people that have chronic diseases are a heck of a lot tougher than the average schmo. The things we put up with and still have to function in society.
I don't think you burden your mom, I think she's thankful you are still with her. I often ask that of my ma, her reply-if you weren't already hurt, I'd kick you, so stop. Gotta luv the ma mentality....

I have raynauds, My fingers would turn purple real easily. I was told back in Feb or march that i have that. I bought some really warm mittens. If your still having problems with it buy some warm mittens. It helps. And take your meds too...it will help!

Hey Bill

Thanks for the reply ;-)


RE: Hope that helps.

Yes is has and thanks for all the details . I gotta see the doc (rheumy) early December so I'll go in with the gloves on and see about this dosage. I was a bit uninformed on first consultation a few months ago.


RE: My presenting symptoms were gout like but within a day the pain, redness, and swelling spread from my right big tow to both feet and lower legs.

Wow ... that did spread quick ! ... Do you recall any major activity or situations before this all started that may have triggered the autoimmunity ?

I know that mine was lots of emotional/work related stress and physical exertion at the same time and did not realize my overall health/fitness level had decreased (vitamin D way low) by being in the office more than on the tools/climbing (outside). One big rigging job and ... BAM ... welcome to sickness ! ... guess I deserve a backhander for that, could have avoided it .... grrrrrrr ;-)


RE: Vit D was fine.

Hmmmm ... Interesting


RE: The key to controlling an AI disease is early treatment and aggressive treatment. That means hit it hard but some patients do not respond to standard prednisone treatment. Short term doses and tapering do NOT work.

I think you are right on the money here. I can sort of detect that 10mg of prednisone is only just keeping me out of a pain zone but still have areas of inflamation. I guess if I get the dose increased I just gotta make sure I don't get sick with something else.


RE: The success in my case was partly luck...IVIG for 5 days in a row at max dose. Had a 50% chance of working. AFter that pred and imuran kept my immune system quiet and I eventually (6 years) tapered off both.

I think 6 years is a long enough haul after that first rollercoaster you were on. Your staying power and determination is 100% ... a lesson for everyone. Was there many side effects from the Prednisone/Imuran mix over those years ?


RE: Diet and supplements are fine but they are NOT going to control your immune system. They are complementary to your suppression meds. Don't let anybody tell you they work. They do not.

Yeah ... I'm with ya on this ... the pills and stuff I listed is only for general health boosting and to try and buffer what the prednisone is taking out.


RE: Sounds like you need to find a rheumy who is experienced in treating lupus, mctd, myositis type diseases. They don't fool around with treatment by "dabbling" with a little of this or that.

I agree ... not many in the Brisbane (Australia) area but so far I have only seen 1. (1 down 6 to go ;-)


RE: PT/exercise in moderation is important particularly if you have a severe case like mine with loss of function.

Was there any particular type of exercises that you found to be most effective in muscle and joint rehabilitation ?

I am still in sort of test mode to see what works/fails. I notice that my muscles can lift more than my joints can handle and if overdone the joints just swell up like an ankle twist and stay sensitive. I've been rigging on communication towers for 17+ years (until now of course) and joints/tendons were always stronger. Bit of a bloody puzzle !


Once again Bill, thanks for the answers ... it's much appreciated.
I'm glad you've finally hit the "pill free zone".

Take care ;-)

Regards
Bruce

Bruce,

It is better if you make a discrete reply rather than copying and typing in between...easier to follow and reply.

First clinical symptoms were Jul 3, 2005 and quickly spread whole body over several weeks.  Continued to worsen and was admitted to the hospital twice in Oct 2005 for more tests and treatment.  By Thanksgiving I was in freefall, lost 40 lbs of muscle in 1 week ( not a typo) and was fighting for my life even though I had been on 60 mg pred since July.  My case was complicated by lupus - kidney, GI problems, infections, dysphagia, cognitive impairment, raynauds, and more.  Reentered the hospital right after thanksgiving 2005 and didn't come out until the following March. 

I was fit, healthy and had basically never been sick in 63 years although I had been under stress for many years for a variety of reasons.  Most cases are idiopathic and although many will claim to know what caused their disease that is usually conjecture.  AI diseases are complicated and often have a genetic basis with complex triggers that can happen over a long period of time.  I had low platelets and mild anemia for 15 years prior to getting ill so the disease was lurking all those years until something pushed my immune system over the brink in 2005.  What that was....no idea at all.

Prednisone or any immuno suppressant does increase the odds of getting an infection or cancer...that is what happens when the immune system is suppressed.  I have only been sick once in 7 years with a sinus infection but I have had basal cell carcinoma 4x although that might be due to my love of the sun over a long lifetime.  Healthy now.  I will take the chance of an illness over risking the potential of  this darn disease.  There are also side effects from the meds but the worst I had were hypertension after 10 months on pred and my blood counts went down after 2 years on imuran.  Hypertension was controlled with other meds and imuran reduced and my blood count stabilized.  Keep in mind that everyone reacts differently.

There is a strong arthritic component with mctd so take care of your joints.  Lupus hit ALL of my joints initially and pm hit my muscles....pain was off the charts and nothing helped.  Arthritis is something I have daily now.

There is no magic bullet for recovery.  I went through pt/ot and speech therapy ( I had a feeding tube for 4 months) and started as an in patient and continued as an out.  After that I worked on my own to make a one of a kind recovery despite missing 35-40% of my muscle cells.  It is best to seek professional help and I can send you information on recommended programs.  A lot depends on how disabled you are.  If you do it on your own do NOT work at high intensity.  Moderate exercise, range of motion, stretching (and more stretching), light weights, mild cardio (elliptical is great).  I started from almost 100% disability so I did a little of everything until I could return to my health club and do more normal things again.  I still do not work out with great intensity but part of that is my age, almost 70, and many old "war wound' from a life of working out and athletics.  My formula is to be persistent and that sometimes "less is more."  If you work out to exhaustion you will probably have problems or injuries.  I had great physiatrists and physical therapists that got me vertical and functional but I take the credit for my crazy dream to return to an active life.  Glad I was so stubborn.

Let me know if you want more information and I can email it to you.

Bill