MCTD: What helps?

Just tried to get the Quviviq covered by insurance but I think it’s pretty new and expensive so they aren’t going for it.

I feel you’re oain. I also went from very active to very inactive. I make myself go to yoga 3 days a week it has helped with my soreness and stiffness. I was diagnosed with MCTD an overlap of sceladerma I January. It’s very depressing disease. Trying not focus on it but when you hurt it’s hard to forget.

Hi everyone, just recently diagnosed with mixed connective tissue disease (mctd). Just looking for support and information on symptoms like muscle and joint pain, chest/lung pain, all causing sleep disturbances! Finding it really difficult at the minute to get relief from pain, fatigue and feeling totally overwhelmed!Started plaquenil (2weeks ago) and anti inflammatories yesterday. Does anyone have any suggestions to help with muscle pain and sleep deprivation? Or any advice would be greatly appreciated x

@mg01
Hi,
I know how overwhelming all of this can be, and I hope you feel better soon. I find warmth helps with muscle and joint pain. I use my heating pad or blanket and use socks and gloves to help keep my ankles and wrists warm. I also have raynauds so the gloves help that as well. It’s not uncommon even in the summer months to find me bundled up! Your meds should help but might take a little while to “kick in” Also rest if you can whenever you can. The exhaustion of MCTD can be brutal, and giving yourself the rest you need is so very important. Mild exercise and stretching are helpful. I try to at walk as much as I can. Gentle message works for me. Naproxen may help a little. Do you know what’s causing the lung pain? I deal with pleurisy and chostochondritis (spell check on that one!) and honestly haven’t found a way to relieve the pain and discomfort from either one. Hope this helps. Stay positive.

@andromeda5845 and others, just wanted to add an update on my experience. I’ve posted it in another autoimmune thread and maybe one on long covid, but anyway. I’m positive ANA but negative on RA. I do have Type 1 diabetes, psoriasis (intermittent), dry eye, multiple sore muscles, intermittent pain long term body wide. I have not been diagnosed with Lupus. Evaluations by neurologist and Rheumatologist but no help for muscle issues. Sore underneath my skin….felt bruised and muscle knots. Still, I worked out daily and treated with ortho, PT, dry needling, biofreeze, etc,

My dermatologist prescribed me daily Hydroxychloroquine several months ago, since they suspect an autoimmune condition. The result has been an incredible halt to my muscle and joint pain. Nothing else explains it. I’m cautiously optimistic! I’m now able to do my workouts pain free, go to bed without pain or muscle knots. I’ve had no muscle pain since taking it. I’m going to discuss this with my dermatologist when I see her next month. It can’t be that simple. Idk…..maybe it’s a coincidence.

I just wanted to ket others know so you can discuss it with your doctors and do your own research.

@celia16 Thank you for encouraging people to do their own research. It's so exciting to hear when someone finds relief!! I have found relief through claritin, pepcid, and a GLP-1. I know I cannot stay on the GLP-1 for a long period of time (nor do I want to) OR the pepcid long term, without increased risks of significant side effects. But having said that, just being able to feel better is so encouraging and such a relief. My immune system is also haywire post Covid, and these 3 medications have worked wonders in calming things down. I am hoping I can microdose them as to be able to have long term, safe reliable relief. Here's hoping we all do!

@jgk177 , what is the pepcid helping with?

@celia16 pepcid is an "inhibitor" helps with the beginnings of histamine response that causes all the inflammation. I never had reflux or heartburn, which is what it's usually used for. My son-in-law is a veterinarian and believe it or not, HE is the one who originally suggested I take the 3 meds I am currently taking. I tried the claritin and OTC pepcid and loved the results, so I asked my temp PCP what she thought about using GLP-1 off label for inflammation. She got right on board, and because I needed to lose 15 pounds that I had put on in the past 4 years, it all worked out. The GI doctor that I saw a few weeks later wrote my a prescription for pepcid and told me to keep taking it and the claritin. Most people just look at me like I'm nuts for listening to a vet, but hell he had been listening to me complain for years and they use the same exact meds humans use for many of the same issues.. so he knows his stuff! Plus their dog has loads of allergies, so he's used to dealing with pharmaceuticals for inflammation and histamine regulation.

@jgk177 , interesting. I am curious about the way it works. Glad you have a winning formula for your symptoms!

I have avoided antihistamines for years because of my dry eye. I also have Salzman’s nodules, so must safeguard my corneas. I found saline nasal spray resolved my chronic congestion and watery nose.

I could get on a GLP1, but it’s tricky with my type 1 diabetes. It can significantly lower your blood sugar. I know some type 1’s who take them though. I have lost almost 100 pounds on my own, but still have a few more to go.

@celia16 there are so many things to consider when taking pharmaceuticals. Until this year I was not taking anything. And I did everything I could to avoid taking anything.. but I have come to realize I won't be getting any awards for stoic suffering and being able to say I am not taking anything regularly but I feel like dog sh*t most of the time.. its not something to be proud of! Losing 100 pounds is amazing.. that takes major dedication and focus! I would say if you are interested to speak to other folks with your profile who take GLP's and see what their experiences have been and then of course your health care provider. One thing I can say is with my aversion to nausea, I was determined to do everything and anything I could not to feel nauseated when taking Wegovy. The Dr said "everyone gets nauseous".. not me!! ha ha. I was SO careful the first few days, I ate about 4 tablespoons of food at a time, took only tiny sips of water and pretty much made sure everything I ate was blended. I'll admit I went a little far with that BUT I never got nauseous and never threw up. I just started my second level of meds (they increase the dosage every 4 weeks for 4 months until you get to a "full dose") and I was a little queasy last night when I went to bed. You are supposed to leave about 4 hours between your last bit of food and sleep, otherwise the risk of nausea and or reflux gets high.. I was a little careless and left a little less than 3 hours, and I felt it. I also experience extreme fatigue in the first 48 hours after a dose (when it's my first at that dosage level) but that's normal. These drugs are incredible for their anti-inflammatory effects and they also 100% quiet "food noise" that most people don't even know they had. I do have some aversions to foods usually the first few days. If I'm being honest today pretty much all I have eaten is non-dairy ice cream. I'm usually MUCH more careful and mindful to consume whole foods, that are low in sugar, not oily and not "junk", but because I just upped my dose less than 48 hours ago, I gave myself some grace today. And I'm not eating more than 1/3 - 1/2 of a cup of ice cream at a time.. Tomorrow I will go back to my usual whole food based eating. In the meantime, I'm ok with what I'm doing because I have never done anything (eating ice cream through the day) like this before and I know it's "one day only"!!