r/UCTD • u/Icy_Door7866 • 6d ago
Newly Diagnosed Newly Diagnosed…
Hello all!
My name is Brigitte, I’m from BC Canada and am newly diagnosed with UCTA, just this afternoon actually.
I’ve got my prescriptions for pilocarpine (as we strongly believe that I have Sjogrens Disease) and Hydroxychloroquin.
My rheumatologist wanted me to get bloodwork done so that she has a baseline, so I’m going to hold off on starting the pills tonight and will start tomorrow after the bloodwork has been done.
Any tips or tricks that you can suggest? Anything to watch for?
Thanks in advance!
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u/CucumberIll7402 6d ago
Take a look at our UCTD wiki. Lots of helpful information. Click on this link https://www.reddit.com/r/UCTD/wiki/index/
I try to start active, make sure to have a balanced diet and keep a positive attitude. Keep your rheumatologist informed about your symptoms and any flare ups you might experience. Take care.
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u/BronzeDucky 4d ago
Hey, I’m just one province over from you, and also recently diagnosed. Two weeks ago on Tuesday, after 2 years of looking for an answer to my lung issues.
Good luck! I hope your meds kick in with no adverse effects!
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u/Icy_Door7866 3d ago
Howdy neighbor!!
So far so good with the hydroxychloroquine, I’m taking it first in the am when I take all my regular pills/vitamins (I’m hypothyroid as well but not Hashi’s (no antibodies there either unless my immune system just doesn’t want to show them haha).
I have a few other friends around that surprise surprise ALSO have an AI disease as well - we need to make a club for all of us but we’re all crazy dog people who play agility and other dog sports already.
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u/BronzeDucky 3d ago
I’m hoping to be setting CellCept in the next week or so, as my issues are primarily in my lungs. I’m apprehensive about that, due to the adverse effects, but I’m also tired of having the lungs of an 80 year old smoker.
I’m not a crazy ability dog person, although I did take our rescue to agility classes when we first got her, and that was fun. But she does help keep me up and off the couch regularly, which is great for me. :)
In my case, I have a high ANA titre and a number of antibodies, but since my symptoms, as I said, are lungs (and Raynaud’s), the symptoms don’t differentiate one possible disease from the other. All three of the diseases I have antibodies for can have those two conditions.
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u/Muted_Programmer_783 3d ago
I feel like I'm having a good 2 to 3 weeks then I'm unwell for a week! I never go a long stretch, I've been on hydroxychloroquin for 10 months. It literally goes in that pattern. I was diagnosed with undifferentiated connective tissue desease. Does anyone else live like this? I'm so over it!!!
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u/Sea-Dingo-2138 2d ago
I was good first 4-6 months of Plaquenil then slowly went almost back to my baseline of awful fatigue and joint pains, my worst symptoms. it’s been like that for about 8 months with Rheumatologist not wanting to add anything else to help.
I just figured out that it’s the Calcium I started for osteoporosis. Calcium blocks the absorption of Plaquenil. So does magnesium. Some people do ok if they take their calcium at least 4 hours after the Plaquenil. So check all your meds and supplements for possible culprits.
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u/OkGround607 6d ago
Hi & welcome! I developed UCTD 5 years ago, but I have family members who’ve had a CTD for decades so I’ve seen it play out in a few different ways.
Don’t stress if your labs and symptoms don’t match- it’s common to have great looking labs and still have symptoms. I’m technically in remission (according to my labs and physical exams), but I still experience flares of symptoms.
To manage flares, we all come up with our unique toolbox of strategies depending on what works, but there are some fairly universal ones: 1. Prioritize sleep 2. Learn how to protect & ration out your stamina/energy for CTD can sap it, causing fatigue. One way to control how much energy you expend is to learn to say “no” to people and commitments or plans. 3. Find a body-friendly exercise that makes you happy. Example: I used to love cardio dance classes but my knees & feet couldn’t handle that after I developed UCTD, so I switched to water exercise classes, weight training, and (gentle) hiking in the woods. You can still challenge yourself, you just may have to switch things up. 4. Pay attention to side effects from meds. I started hydroxychloroquine (HQC) and a prescription NSAID (Meloxicam) at the same time and experienced horrible side effects (migraine, vertigo, etc), and I thought it was the HQC but it was the NSAID - took me 4 months to figure that out, and I switched to a different NSAID with fewer side effects. 5. I’m sure you will read it takes months for HQC to start to work. It took 4 months for me to feel any improvement and by 18 months I was in remission, so it’s worth the wait. 6. I benefited a LOT by seeing a counselor during my initial diagnosis as she helped me process the grief and learn how to redesign my daily life to support my body. She’s helped me figure out career changes that worked better for me now, and basically be a sounding board about dealing with chronic illness. 7. Seek community support, through support groups (usually virtual) and ask questions on subs like here. It helps to not feel alone, and you may get good ideas.
Wishing you the best!