The healthy lifestyle can really help! Keep it up! And stay on site. We would love to keep up with how you are doing.
Mary Ann

Thank you! I’m curious as to how many people, if any, maintain mild symptoms? Just wondering the chances of this not getting dramatically worse?

I am one of many with mild symptoms.

Worst was pericarditis at 19-- very serious-- & two blood clots, DVT, about 2005 and 2012.

I am 59 years old and work a 40-45 hour week, ski a few days every winter if conditions are good, body-board maybe 15 times a year. Very aggressive with both, single or double-black diamond skiing and waves up to 4 or (very rarely) 5 feet, but shorter sessions.

I am typically very sore for about 30 minutes to 2 hours in the morning and get bad headaches and afternoon fatigue, and have trouble swallowing food (sometimes a lot of trouble!)

No major organ damage, all blood work normal except for crazy, crazy high anti-RNP and sometimes borderline anti-phospholipid antibodies. ANA has always been normal, even when symptoms are bad.

I do not drink or take recreational drugs, symptoms controlled (partly) with cannabis oil (CBD, low THC) and Norco.

Plenty of folks here have had very long remissions. Let's hope you are one of them! Welcome, please continue posting and let us know how it's going.

Thanks so much for the info/response! It’s great to hear some positive stories. My stress has made this so much worse- and if I can relax, then I feel much better. Your story helps.

Thanks again!

I am also newly diagnosed MCTD at age 48. I really up until months ago had no symptoms other than hair loss and a red face rash When out in sun. Even full of sunscreen, hat and glasses. This started derm to do bloodwork and finally leading to rheum visits. I am so scared and really pretty devastated. The potentials of this disease are not good. My hands, wrists and feet hurt and I have numbness left foot and leg. I have adopted autoimmune protocol diet... only thing I can control. On plaquenil for a month but notice no difference. Glad I found this forum....feel very alone in this even though my husband is awesome

Hi there. Diet change is also the only way I feel any control. After my appointment with my rheumatologist Mayo Clinic, I made an appointment with a functional medicine doctor. She’s doing all new bloodwork to check for vitamin deficiencies and allergies. She put me on a strict diet which includes gluten free and dairy free as well as low sugar. She also gave me high potency vitamins including a B 12 shot and methylfolate. t’s only been a few weeks but I feel good. I still have Reynauds and joint pain in my wrists in the morning & some throat tightness that comes and goes. My rheumatologist did not give me any medication at all. Which I guess makes sense since the side effects are severe and my current symptoms are not. I just noticed that everybody else seems to get put on meds pretty quickly??

Allie,
I am one of the lucky ones with relatively mild symptoms ... but I'm in my 50's and before my diagnosis, I was ready for a hip replacement... so in a way the diagnosis was a bit of a relief (sort of anyway :-). I was prescribed Plaquenil (quinine) from the get go and it had almost immediate (within weeks) benefit for me and has been getting progressively better for six months. Now I'm in the midst of a flare ... but I'm certain the flare is temporary and I'll be back on the path of symptom reduction.

I can not tolerate alcohol any longer ... and caffeine only in moderation. Eating more foods that tend to reduce inflammation response and less that do the reverse has worked well enough for me so far. I thought gluten may have been a problem but it's not for me.... still I watch how much I consume. Adding turmeric and ginger root to my foods seems to have a positive effect as well.

Everyone is different. You will find lots of people on this site with years of knowledge and experience with this disease, listen to them and you will find the ways that work best for you.

All the best,
Rick

6 month check up with rheumatologist went well. Blood work is about the same. My joint pain and hand swelling has gotten worse, so I’m finally getting on meds. I’m excited to see if the medications help! Starting with a steroid pack (6 days) & 200 mg of Plaquenil. I’m nervous about side effects but feel I need something to calm this crazy down...still working on healthy eating and vitamins.

Happy Thursday.
Allie

Hope so, but dont stress out too much about it. I just went to the rheumy and all my labs are again normal and I am in remission! I take many vitamins, but no drugs for the disease and eat a terrible diet! LOL! Good luck!
Mary Ann

Wow- within 48 hours of my first steroid pack dose, 90% of swelling and joint pain was gone! I’m on day 5 of 6 of the steroids. I’m a bit scared to stop them, fearing the symptoms will be back:(.

What an amazing & terrifying drug!

I didn’t realize how much pain I had until it got better.

Still taking Plaquenil, although I think it takes a bit of time to kick in....

Happy Monday,
Allie

Allie
Yes those steroids are great but not to be used very much. Plaquenil does take some time-give it time! Till then find dietary solutions and ask others for their input. I'm taking fish oil, shark cartilage and rain deer antler velvet to help while also trying to change my diet- cutting out most bread and eating more veggies and drinking more fluids.
Hope to find others sharing their findings.
Doz

Agree w/Doz r.e. prednisone. I got away with taking it for about 10 years or so, but on very low maintenance doses, I think 5 mg. every other day between age 18 and 28. I did take higher doses when I had pericarditis -- very high -- and tapered down slowly.

My theory is that the every-other-day protocol is not as hard on the body, and that the drug has fewer side effects when you are younger. All my organ function is excellent, stomach is still okay-- but the long term side effects get really wicked on high doses.

I think the whole dose pack-- starting at a huge dose and ramping down-- is really wrong for this illness. It's a protocol that's meant for when you get a massive dose of poison ivy or something, for connective tissue illnesses, I think it would be smarter to try six months on alternate day dosing at around 10 mg and then drop to 5 mg every other day and then taper off.

The last time I did that, when I was 28, I went into nearly total remission for 20 years. I think my immune system "forgot" that anything was wrong until late middle age, and I think that's a common phase of life for remission.

Regarding the Prednisone- I agree that the large dose pack can’t be good...short term results. So my doctor put me on a lower dose (5mg/day) until Plaquenil kicks in. The low dose does help, but it’s not the miracle cure that the 6 day mega pack provided. I am not surprised by this.

Have a good weekend!!

So after 10 months- finally off prednisone. Wow. I’m happy and sad. Joint pain came back but only slightly. I’m three weeks off and side effects are going down.

Bloodwork again in two weeks so fingers crossed. I’m still on Plaquenil and CellCept (because of potential serious muscle issues)

Hope y’all are doing well!