MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Good morning!
I am loving what Gayla is doing for us. My girls are swimmers so I am interested in that info also.
I go to the dentist today. think I will ask for a root canal as my tooth will not stop hurting. It is not too bad but is getting worse.
As for pain med. I try to avoid pain meds as much as possible. I find that the more I take, the more I need. I think I get used to it so it doesnt work. The DR had me on Celebrex and then on 2 daily. I stopped taking it and it was hard but now,I seem to be tolerating the pain as well as I did on the Celebrex. Most of the time, the pain comes and goes and if I can wait it out for a while, it will lessen so I can get by without drugs. Sometimes it will get unbearable and I take Ibuprophen or Tylenol or both! It will cut it enough so I can make it. The Dr Wanted me to take Ultram and had me on Clonazipam but I refused the Ultram and finally got off the Clomazipam when I ran out and couldnt get a new perscription. It was hard, but by the time I got a refill, I realized I could get by without it most of the time. So, I keep it for emergencies. Of course, I will take pain med in the future if I need it, and I realize that some of you have a lot more pain than I do. And I could be there someday. Maybe even tomorrow!
Now I am taking AREDS formula vitamins for Macular Degeneration. The bottle recommends 4 tabs per day. I looked up what the goverment study recommended and it is the equivalent of 2 tabs daily. About 30,000 iu of vitamin A. So that is what I take. Now I read that too much vitamin A can contribute to bone loss. So, I take Nexium, Medrol, and vitamin A, all of which contribute to bone loss. And no sun, so my vitamin D levels are low. I take 1000iu of that. What is a girl to do? I use an estrogen patch, take Boniva, take Calcium suppliments. How many of your drugs do you take because you take something else?
Mary Ann
I am loving what Gayla is doing for us. My girls are swimmers so I am interested in that info also.
I go to the dentist today. think I will ask for a root canal as my tooth will not stop hurting. It is not too bad but is getting worse.
As for pain med. I try to avoid pain meds as much as possible. I find that the more I take, the more I need. I think I get used to it so it doesnt work. The DR had me on Celebrex and then on 2 daily. I stopped taking it and it was hard but now,I seem to be tolerating the pain as well as I did on the Celebrex. Most of the time, the pain comes and goes and if I can wait it out for a while, it will lessen so I can get by without drugs. Sometimes it will get unbearable and I take Ibuprophen or Tylenol or both! It will cut it enough so I can make it. The Dr Wanted me to take Ultram and had me on Clonazipam but I refused the Ultram and finally got off the Clomazipam when I ran out and couldnt get a new perscription. It was hard, but by the time I got a refill, I realized I could get by without it most of the time. So, I keep it for emergencies. Of course, I will take pain med in the future if I need it, and I realize that some of you have a lot more pain than I do. And I could be there someday. Maybe even tomorrow!
Now I am taking AREDS formula vitamins for Macular Degeneration. The bottle recommends 4 tabs per day. I looked up what the goverment study recommended and it is the equivalent of 2 tabs daily. About 30,000 iu of vitamin A. So that is what I take. Now I read that too much vitamin A can contribute to bone loss. So, I take Nexium, Medrol, and vitamin A, all of which contribute to bone loss. And no sun, so my vitamin D levels are low. I take 1000iu of that. What is a girl to do? I use an estrogen patch, take Boniva, take Calcium suppliments. How many of your drugs do you take because you take something else?
Mary Ann
Im moving slow this morning. And of course Riley left her lunch on couch, and Im headed to the vet. Hoisting my 115 lb Briard with a gimp leg and um tummy problems(nice way to put it?) into the SUV should be interesting. Just to add drama-- We think he was bitten by a copperhead. Theres a definite puncture between ankle(dog elbow thing) and paw and it's massively swollen. Our next door neighbor killed a copperhead yesterday in his backyard. *sigh*
Vitamin A is pretty toxic in high doses. It is stored in your liver for distribution through fat cells- meaning it doesnt fade(?) easily. 10k per day is upper limit for average Joe. Compared to that, 30k sounds high but I ve heard of prescription 50k, but not for any prolonged time period. Vitamin A overdose leads to "tiredness, joint soreness, discomfort, lethargy, upset stomach, decreased appetite, slow or decreased growth, irritability, headache, drying and cracking of the lips and skin, hair loss, and yellowing of the skin." :(
My biggest concern is the added input from your diet. Mangos(10k per), carrots, sweet potatoes, spinach, and broccoli. Your pill is your *supplement*. Remind your doctor at every visit to add to your labs to monitor this.
Bone loss prevention= resistance training. Think of a pencil. You can slightly bend it. Your bones do the same thing. When they get that little bend, it stimulates the bone marrow to kick it up a notch for production to replace dying bone cells.
Vitamin D- How much sun can you tolerate? None? Because only 15 minutes of sun provides more vitamin D than can be put in a pill. Supplementation of this is crucial for us, just remember how a small dose of sunshine creates vitamin D. Dance naked in your backyard for about 10 minutes and see if that doent help! Hehe!!!
I am absolutely shocked that I have nt read of anyone using Glucosamine/Chondroitin. My clients swore by it- if they ran out, they could feel the diffenerence in about 2-3 days. The only LAME reason Im not on it now is because the last formulation tore my stomach up. And I have nt researched for a better one. Scientifically, it provides the nutrition for our synovial sacs for increase/more efficient production of synovial fluid ( the lubrication for joints). But now Im all motivated and will look into it today... Any one have any recommendations for a high quality formula?
How much sun exposure can most of you take with out getting a flare or rashy?
Mary Ann
Physically feeling great. Didn't work out all weekend...well not at the gym. I swam all day Sat. and Sun. and ate well all weekend, so, no guilt really. Feeling a little sad though...not really sure why. Probably just missing my family. Probably the pressure of the pending move and trying to find a job back in Dayton:(
Have another appt with the pulmo this week. Doing better. Not great, but better as far as the breathing goes.
Well, have a peaceful day all:)
Regarding the glucosamine products: I have stomach issues that won't allow the absorption of any pill form Glucosamine-chondrotin products. I did try a liquid, G/C with MSM bu Vital Earth that was affective in the early joint days and helped before the damage had set in. It was about $45. 00 for a 30 day supply but I would recomend it for those without damaged joints, shellfish allergies, or are not vegetarian. I have a friend who swears by Schiff Move Free w/ MSM but she doe not have absorption issues.
Having a vit D level check in 2 weeks. Been taking my cal-mag-d liquid regularly so it will be interesting to see if I absorbed any of it.
I wish you all a good week!
MT, I agree with you in general, less pain meds is better-- my dosage has remained constant for nine years or so, but I would love to edge it downwards. Dallas, you know I totally agree with you about Clonazepam, almost ANY other benzo or hypnotic is easier to wean yourself off of. Good tip on the Vitamin D, and I am fortunate in that I can get about 10 minutes of direct sun during the afternoons, and about 20 to 30 minutes in the late morning or late afternoon. Also, the sports I like, (skiing and bodyboarding) I am covered pretty much head to toe, except for my face. But a LITTLE sun does make me feel better... a lot makes me tired, it's a razor's edge. Snapcrack, Viv and MT, I do take glucosamine and chondroiton, but I kind of spaced out on it for a week or so... I have to take them after meals, when I'm consistent with it, I do a little better, thanks for the reminder.
WRK, I have the same issue... I don't see my friends and family enough, and after a good visit, I sometimes feel very melancholy. No easy cure for that... sometimes I will call or e-mail the person who just visited, just kind of review all the fun we had, and that will make me feel a little better.
A pain-free day to all, Dallas, glad you are feeling better...
--Catalyzt
christine
Doing well today. As to sun exposure, I seem to be okay with exposure in the evening and mornings. Afternoon Sun, I can handle about an hour, but I try to wear long shirts, etc and/or sunscreen pretty much all the time that I am outside. I went out and purchased some of those UPF shirts, Not sure if they do any more than regular shirts. Anyone have any experience with that? We are off to Hawaii in November (my mother in law has never been and is getting up there in years so we are taking her) I am a bit concerned about the sun exposure there.
If the sun protective clothing works, then that may be a help. I saw some long shirt and long legged swimwear with UV protection. expensive though
Hope you are all doing well. My son starts back to High School tomorrow.
Oddman
a friend of mind is severly (& dangerously) allergic to the sun (always has been ,but recently it has gotten worse -- and living in CA, it's a daily issue) This year for the first time she purchased a good amount of sun protective clothing. Said it's working really well. She has spent some time at the beach with the family during peak hours -- said she used sunscreen AND the protective clothing (including a hat), stayed under an umbrella when possible, but did spend time by the water with the kids and said it all went well and she did not have an allergic reaction. I'm planning on ordering it some of it myself -- she told me the name of the company she ordered from, but I can't seem to remember it -- if you're interested, let me know and I'll get back to you.
Hawaii sounds nice - hope you all get to go!
BTW -- with all this concern over too much sun, Seattle is sounding like a good spot to be in!