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Posted 11/23/2021 2:12 AM (GMT 0)
I'm a 44yo male. Married with 4 kids (10-17). I've been a firefighter/paramedic for 18 years. Mostly, I enjoy obstacle course racing and trail running, which I train for running 15 miles/week and doing other workouts. I'm also active outdoors taking care of our property. Granted I eat whatever I want, and I have had a history of alcohol abuse (I like beer), I've avoided needing to be on any prescription meds and am usually a picture of health. I have OSA but even that's managed with an oral appliance.

The story.... In late September I went to the Obstacle Course Racing World Championships in Vermont. It was physically and mentally stressful. Shortly after I felt chilled and fatigued, but it cleared up with some immune boosting supplements. Then the night sweats, fatigue, & cold sensitivity started. This was Oct 25: I had blood work done and found my RNP was 1.5. At the same lab my CRP was 41 and Sed rate was 36. Both of these lowered 9 days later to 17 and 13 respectively. My lymphocytes are around 9-10 (instead of 20-45), but my neutrinophils are elevated. 2 Drs I went to initially thought it was due to Lyme - as Lyme often mimics AI disease. Since we were thinking it's Lyme, so I've been on Doxycycline between that and OTC Naproxen (Aleve) I'm still taking those and I'm feeling normal again. I have a history of mild proteinuria because I'm athletic, but lately the urine is more foamy than usual and sometimes my ankles are swollen with fluid.

Then the blood draw on Nov 19 came back with an RNP of 5.5. I've got a rx for Prednisone and Plaquenil. As a paramedic I know long term use of prednisone is not healthy. Both drugs cause low blood cell numbers, muscle weakness, muscle loss, and a host of side effects (go read up on them). Doxycycline and Aleve have been working great as far as how I feel. Being a paramedic, having a suppressed immune system could make me more sick more often and what good is that?

To further complicate things I'm supposed to have a stem cell therapy injection to fix a torn rotator cuff in December.

Here's my emotional vent so please, please give me some grace and hear my heart:
How on earth did I go from this healthy to potentially having an ever decreasing quality of life? As a paramedic I've seen diabetics, and cardiac patients in their early 50s who were sedentary with long term health problems. I swore I didn't want to be one of those. All my life I've been saying I want to have an active, vibrant quality of life. Now that's threatened. Financially we can't afford constant medical care. Most of all I don't want to lose my ability to do obstacle course racing, trail running, or climbing at the climbing gym. My circle of friends has been my race "framily." But... being laid up and feeling like ^&$^ because of the side effects of Predni and Plav aren't a much better choice for me. Especially since I'm largely asymptomatic at this point (and getting better every day). I just can't help but think this is a temporary stress-induced situation after my trip to Vermont. Could this be fatigue syndrome that's activated everything? I was feeling pretty healthy and stress free until I saw my latest RNP numbers tonight.

We're already looking to switch to a plant-based, anti-inflammatory diet and taking anti-inflammatory supplements. I've got a 2nd opinion appointment lined up with a D.O. rheumy, and a hemotologist. Hopefully the DO can offer a more whole-body treatment plan.
Posted Today 2:07 PM (GMT 0)
You’re probably facing the biggest challenge of your life so far, but by going on a healthy plant-based diet, I believe you’re on the right track to a healthier life. I always feel better when I remove carbs from my diet. I frequently receive advice from well-meaning friends who encourage me to push through the pain and fatigue but that doesn’t work for me. Listening to my body and resting when I need to, allowing my body to get the rest it needs, has worked in my favor. I hope you find a rheumatologist with whom you can build a good working relationship. Remember, you aren’t lupus, and with the right treatment, you CAN get better. I did. In my case it was because of huge amounts of prednisone. Hang in there, friend. Try to find a good emotional support group. This forum was mine, especially on days when I felt like giving up. I’m happy that I didn’t. And remember, science is finding new treatments all the time.
Posted 11/30/2021 2:33 AM (GMT 0)
I found that Plaquenil (disease-inhibitor) and Prednisone (anti-inflammatory) were vital in keeping me fit and active -- neither damaged my health in any way. Prednisone over a certain amount did cause problems sleeping, but managed my inflammation rather quickly so that was a short-term affair.

A diet focused on avoiding inflammation is a great help -- low sugar and low carb is my basic routine, I"m too impatient to get more detailed with food. Ha.

Listening to your body and treating it properly when it tires are important! I was a marathon runner when first diagnosed, and over the last 20 years have had to cut back on that -- but aging is going to slow us down one way or another, right?
Posted 12/10/2021 2:15 AM (GMT 0)
Update:
I know this forum doesn't get a lot of traffic so this is for whoever comes along later and reads it.

TL;DR: My first rheumy mis-diagnosed me. I don't have MCTD. Advice: Find a rheumy who looks at the whole picture, finds patterns in your labs, isn't just trying to hand out pills, and most of all - listens to you!

After seeing that my symptoms (or lack of) and story didn't line up with most MCTD folks, and knowing I had other reasons I could be feeling bad, I decided to treat my first rheumy's diagnosis with skepticism. I got multiple other opinions. Today I saw a D.O. rheumy with much more experience than the first (M.D.) rheumy I had. The 2nd opinion: based on my lack of consistent, regular symptoms, RNP of <8, and knowing my back story of how this started, and that most of my initial labs have completely returned to normal (CRP, sed rate, kidney function) she assured me I didn't have MCTD. Her explanation was AI disease symptoms come on gradually, not instantly like mine. And I needed to have them for >8 weeks. Also, since the initial diagnosis, I've still been able to run 10+ miles at a time, in inclement weather - something I wouldn't be able to do if I were truly symptomatic. If I was symptomatic consistently with an RNP of >8 at least 2 times then she'd consider me a positive MCTD case.

While this is good news for me, I've learned a lot by these last few months. I've learned to appreciate what I do have, a wife that is willing to care for me. I've made nutritional and health changes for the better, and learned to appreciate good, consistent rest. Most of all it's made me aware of a disease than many suffer from, that I had no idea existed.

My thoughts and prayers (for what they're worth) are with all of you who continue to fight MCTD. May a cure and better treatment be found soon. Thank you for your hospitality and kindness on this forum.
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