Undifferentiated Connective Tissue Disease freakout, questions
July 25, 2020 12:44 AM Subscribe
I may be getting the beginnings of this, based on consulting a battery of doctors in the last two months. Rheumatology person thinks the odds are good, and recommended Plaquenil or Minocyclin. More inside..
When the Covidings first started, I had a ton of stress at work getting everyone setup for remote stuff. I had a couple of panic attacks after no sign of anxiety for many years. After we locked down here in town, I calmed down for a few weeks. Then, one day, around end of April, suddenly noticed everything about my prior chronic illnesses that had been bugging me for years were amplified x3. Sudden arm tendonitis, seeming weakness in extremities. Then I definitely started having anxiety stuff, and now depression, which I have had little of for many years.
Exercise now causes flare up of tingling or abnormal soreness in extremities. If I sit cross legged, one of my feet will start to ache fairly quickly. If I avoid exercise, I am mostly ok, but even standing around in my good sneakers is causing feet to randomly ache now. I don't really have joint paint, and have lost about 5 lbs in the last 2 months, likely mostly from anxiety. I am pretty thin at 5'9" and now 143lbs. Thyroid is under control, am not diabetic.
Neurologist says they see nothing except my old arm neuropathies, but first visit to recommended rheumatologist, based on my extensive history of other autoimmune stuff, plus recent bloodwork that points in UCTD direction, says they believe its possible I'm getting UCTD. While this seems to be the best of the potential connective tissue diseases, it is freaking me the hell out. Working on getting anxiousness & depression dealt with, yet still wondering if I need to start meds for UCTD now. (I also know that anxiety can make you feel tingling and numbness in the extremities, and I certainly know what that feels like since I've had it on and off for weeks, but that is not this).
I've heard UCTD can go away sometimes. Tough for me to count on that, especially if it makes it so I become disabled. My g.p. thinks Plaquenil works pretty great and claims has had very few patients over the years that have had any of the listed serious side effects, but i see it takes several months to a year before it kicks in.
I know YANMD, but I am really worried. Input?
When the Covidings first started, I had a ton of stress at work getting everyone setup for remote stuff. I had a couple of panic attacks after no sign of anxiety for many years. After we locked down here in town, I calmed down for a few weeks. Then, one day, around end of April, suddenly noticed everything about my prior chronic illnesses that had been bugging me for years were amplified x3. Sudden arm tendonitis, seeming weakness in extremities. Then I definitely started having anxiety stuff, and now depression, which I have had little of for many years.
Exercise now causes flare up of tingling or abnormal soreness in extremities. If I sit cross legged, one of my feet will start to ache fairly quickly. If I avoid exercise, I am mostly ok, but even standing around in my good sneakers is causing feet to randomly ache now. I don't really have joint paint, and have lost about 5 lbs in the last 2 months, likely mostly from anxiety. I am pretty thin at 5'9" and now 143lbs. Thyroid is under control, am not diabetic.
Neurologist says they see nothing except my old arm neuropathies, but first visit to recommended rheumatologist, based on my extensive history of other autoimmune stuff, plus recent bloodwork that points in UCTD direction, says they believe its possible I'm getting UCTD. While this seems to be the best of the potential connective tissue diseases, it is freaking me the hell out. Working on getting anxiousness & depression dealt with, yet still wondering if I need to start meds for UCTD now. (I also know that anxiety can make you feel tingling and numbness in the extremities, and I certainly know what that feels like since I've had it on and off for weeks, but that is not this).
I've heard UCTD can go away sometimes. Tough for me to count on that, especially if it makes it so I become disabled. My g.p. thinks Plaquenil works pretty great and claims has had very few patients over the years that have had any of the listed serious side effects, but i see it takes several months to a year before it kicks in.
I know YANMD, but I am really worried. Input?
Not to scare you but ... I had serious Plaquenil issues within 48 hours of starting. I had to take almost a year off my life to recover and I'm barred from ever taking another antimalarial now.
I now treat my autoimmune issues with lifestyle changes and it's not easy but it's the only thing I can do. Strict diet, ice baths/cold showers, turmeric, CBD, etc. Maybe something like this would help you too, regardless of what decision you make on medications?
On the other hand, a relative of mine had good results with Plaquenil and felt it helping within the first 2 weeks or so
posted by kristicat at 6:28 AM on July 25, 2020
I now treat my autoimmune issues with lifestyle changes and it's not easy but it's the only thing I can do. Strict diet, ice baths/cold showers, turmeric, CBD, etc. Maybe something like this would help you too, regardless of what decision you make on medications?
On the other hand, a relative of mine had good results with Plaquenil and felt it helping within the first 2 weeks or so
posted by kristicat at 6:28 AM on July 25, 2020
I think you should give the minocycline a shot if you can get the prescription.
There are well documented cases of dramatic remissions of a range of autoimmune conditions from taking minocycline, though it's by no means a panacea.
posted by jamjam at 11:13 AM on July 25, 2020
There are well documented cases of dramatic remissions of a range of autoimmune conditions from taking minocycline, though it's by no means a panacea.
posted by jamjam at 11:13 AM on July 25, 2020
Sharing my own experience so you have another perspective of recovery in this context.
I have several autoimmune conditions. Plaquenil has been fine for me, and I am generally sensitive to meds. I noticed it helping within about 4 months. I get my eyes checked once every year, and will stop it if they ever find any emerging issues.
Prednisone works ok for breakthrough symptoms but the roid rage is real and not fun so I avoid it. I also get rituximab infusions, but that's on hold at the moment because of covid (it crashes your immune system). Rituximab makes me feel like crap for 2-3 days and then I feel much better overall for about six months. Rituximab is considered a biological. I was very scared the first time I got it.
Exercise triggered flares a lot for me before I started treatment. I was going to a lot of yoga classes and one class would make my tendons pop and give me really swollen feet etc. It was a scary time. I was afraid I would have to give up exercise altogether. (I haven't had to do that! But I do have to listen to my body. I can no longer push myself like I used to if my body is feeling weak.)
Gluten free helps some. Paleo helps some. Keto helps significantly but is a lot of work to maintain.
I also add turmeric to lots of my foods, take quercetin for inflammation, drink Tulsi and use ashwagandha. Immune modulators are often ok for AI conditions but anything that specifically activates immune response is not. (Elderberry, echinacea, etc)
Stress management is really important. Stress is a big trigger for me. I have to be mindful of not doing too much in a day. For example I can't travel to and from places with a quick turnaround unless I give myself a day off to rest. If I jump right back into work, I end up sick. So I've had to make some adjustments but life overall is more or less the same, and many of those adjustments I'd have to make due to getting older anyway.
My symptoms are worse right now because I had to stop one of my treatments. I am also taking "low dose naltrexone" outside of my regular healthcare system. I thought it was mostly placebo effect but symptoms got so much worse when I stopped it that it must actually be helping me. It's considered a bit of a woo/holy grail treatment and there's probably a lot of bogus information about it but if you look hard enough there's some good research and science also.
Getting a chronic illness diagnosis is a process. Grief, anger, fear are all normal! Be gentle with yourself. It may resolve on its own and it may not but the treatments are generally helpful.
Also, I'm sure you know this since it's become common knowledge but anxiety and depression can be symptoms of inflammation. So your mental health stuff could be part of this inflammatory response in your body. When my conditions are causing less severe systemic symptoms (for me that is dryness, joint pain, profound fatigue, weakness, loss of sensation in my fingers, and a rash), I also have less anxiety. When I am about to get an attack of hives, I also feel a wave of agitation/angst independent of any thoughts or circumstances. Not sure what the specific science of that is, but there is clearly a connection between the emotions and that inflammatory response.
Memail me if you want to chat more. I remember the fear when I first had symptoms. It's a hard journey. It helps to have others along for the ride.
posted by crunchy potato at 3:48 PM on July 25, 2020 [2 favorites]
I have several autoimmune conditions. Plaquenil has been fine for me, and I am generally sensitive to meds. I noticed it helping within about 4 months. I get my eyes checked once every year, and will stop it if they ever find any emerging issues.
Prednisone works ok for breakthrough symptoms but the roid rage is real and not fun so I avoid it. I also get rituximab infusions, but that's on hold at the moment because of covid (it crashes your immune system). Rituximab makes me feel like crap for 2-3 days and then I feel much better overall for about six months. Rituximab is considered a biological. I was very scared the first time I got it.
Exercise triggered flares a lot for me before I started treatment. I was going to a lot of yoga classes and one class would make my tendons pop and give me really swollen feet etc. It was a scary time. I was afraid I would have to give up exercise altogether. (I haven't had to do that! But I do have to listen to my body. I can no longer push myself like I used to if my body is feeling weak.)
Gluten free helps some. Paleo helps some. Keto helps significantly but is a lot of work to maintain.
I also add turmeric to lots of my foods, take quercetin for inflammation, drink Tulsi and use ashwagandha. Immune modulators are often ok for AI conditions but anything that specifically activates immune response is not. (Elderberry, echinacea, etc)
Stress management is really important. Stress is a big trigger for me. I have to be mindful of not doing too much in a day. For example I can't travel to and from places with a quick turnaround unless I give myself a day off to rest. If I jump right back into work, I end up sick. So I've had to make some adjustments but life overall is more or less the same, and many of those adjustments I'd have to make due to getting older anyway.
My symptoms are worse right now because I had to stop one of my treatments. I am also taking "low dose naltrexone" outside of my regular healthcare system. I thought it was mostly placebo effect but symptoms got so much worse when I stopped it that it must actually be helping me. It's considered a bit of a woo/holy grail treatment and there's probably a lot of bogus information about it but if you look hard enough there's some good research and science also.
Getting a chronic illness diagnosis is a process. Grief, anger, fear are all normal! Be gentle with yourself. It may resolve on its own and it may not but the treatments are generally helpful.
Also, I'm sure you know this since it's become common knowledge but anxiety and depression can be symptoms of inflammation. So your mental health stuff could be part of this inflammatory response in your body. When my conditions are causing less severe systemic symptoms (for me that is dryness, joint pain, profound fatigue, weakness, loss of sensation in my fingers, and a rash), I also have less anxiety. When I am about to get an attack of hives, I also feel a wave of agitation/angst independent of any thoughts or circumstances. Not sure what the specific science of that is, but there is clearly a connection between the emotions and that inflammatory response.
Memail me if you want to chat more. I remember the fear when I first had symptoms. It's a hard journey. It helps to have others along for the ride.
posted by crunchy potato at 3:48 PM on July 25, 2020 [2 favorites]
I too was told when first diagnosed with a connective tissue disease (autoimmune) that sometimes it can "burn itself out" over time. Still waiting. I'll be thrilled if it ever happens, but I'm not counting on it.
But on the other side, I've been on plaquenil (200mg 2x/day) for about 10 years now with no side effects whatsoever.
posted by invincible summer at 6:42 PM on July 25, 2020
But on the other side, I've been on plaquenil (200mg 2x/day) for about 10 years now with no side effects whatsoever.
posted by invincible summer at 6:42 PM on July 25, 2020
I’m not trying to be fear mongering, but a family member of mine is essentially blind from Plaquenil toxicity that continues to worsen a decade or so after stopping the drug. Her case is not typical, but it is really scary. I’d at the very least have a red field test done by an ophthalmologist first and make sure you’re not already in the danger zone (someone else I know was told she was already marginal and should not take Plaquenil), and then continue to test diligently at the intervals your ophthalmologist suggests and discontinue/find an alternative at the first sign of trouble.
posted by bananacabana at 9:18 PM on July 25, 2020
posted by bananacabana at 9:18 PM on July 25, 2020
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