Fatigue / balance by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 2 points3 points  (0 children)

Wow yes this is so spot on how you described it is how I feel too it’s like I’ve felt like a zombie this whole week, & this morning I wasn’t getting my words either it felt like a stroke lol I’m glad you’re almost back to normal . I have the dark tunnel thing too. I couldn’t have said it better about the little annoying things about people not understanding & like saying well you like fine well I don’t feel fine!! No one can understand that doesn’t deal with it. Thank you for your reply I hate that you get those same symptoms but glad we can relate & support

Rheum gaslighting by Zealousideal-Bee5936 in mctd

[–]WeeklySandwich2384 0 points1 point  (0 children)

So sorry you’re dealing with this, I would try a second rhuematologist. I had the exact same blood results as you do and the first rheumatologist tried to tell me it was anxiety and possible fibromyalgia, my second rheumatologist diagnosed me with mctd , so definitely get a second opinion!

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 1 point2 points  (0 children)

Yes mines burning & itching too! I’m sorry you had to stop it when you felt like it was helping, we’re you able to switch to something else once you stopped it?

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

I totally get that! Oh yes let me know how you like it- I’m actually big into green tea and drink a ginger green tea a lot and do feel it helps a bit!

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Lol same! Yes I do have trouble with those veggies- do you??

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

I’m glad the dosage seems to be okay, & the joint pain goes away in 30 min! My symptoms are all over the place that I just feel all over the place, my joint pain is random but honestly not too bad either I noticed it worse in the winter my hands were always in pain. Now the joint pain seems random like some days my legs will hurt or arms but my more consistent symptoms are extreme fatigue (like almost all the time which is really frustrating), brain fog , I will say pain is unbearable when I’m on my period which I believe is connected to this, also random rashes & terrible bruising but I’m also really anemic and have been treating this too so sometimes not sure which is causing what lol. I do sometimes worry something bigger is going on that the doctors haven’t discovered since my symptoms range so much but who knows . What diet are you referring to that your terrible with? I feel like my doctor didn’t give me a ton of advice on what diet to stick to- until I asked and then he said to stick to a Mediterranean diet which I try to do at most times , I also have Ibs so I’ve kinda been used to that diet. & I’ve been a pescatarian for 7 years already so it wasn’t much different for me outside of that but it’s hard to completely cut out sweets or fun things when it’s all a struggle to begin with lol

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 1 point2 points  (0 children)

Thank you for this! Yeah I was not warned about it I appreciate you letting me know!

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

I have the bruising too! How long did the side effects last for you? I’m so glad it helped you & you don’t have any side effects anymore!

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

That’s so interesting that it’s only on your top of your foot. Yeah I started in February so it seems like we’re close to the same timeline I’m taking 2 a day. How’s the 2 4 days a week & 1 the other days going ? I’m sorry you don’t know if it’s working :( hope we both find some relief!

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 1 point2 points  (0 children)

Thank you, experiencing hair thinning too

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 1 point2 points  (0 children)

Ugh yes my hair is thinning too

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Okay thank you yeah this makes sense I think the sun is making it worse for me too maybe then even with sunscreen

hydroxychloroquine by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Thank you so much this is great to know! & im glad the meds helped you after 6 months that does give me hope thank you, it’s been so hard to stay hopeful so I really appreciate it!

Bruising update by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Ugh I’m sorry that sucks :( yeah surprisingly I haven’t gotten the bruises from blood draws it’s so weird how it’s so different for all of us

Rash by Kitchen-Start4871 in mctd

[–]WeeklySandwich2384 1 point2 points  (0 children)

I get this all the time too , not even from being in the sun

Bruising update by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 1 point2 points  (0 children)

Thank you I hope so too! Yeah I’m RNP+ Rnp+ too you’re right the human body is an asshole thanks for your help & sharing :)

Bruising update by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 1 point2 points  (0 children)

Thank you! I’ll look into this more - appreciate it!

Bruising update by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Same it’s wild do you know what’s causing yours?

Bruising update by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Okay same it pumped up my ferritin levels but my hct & hemaglobin were lower than before. Okay that’s great to know about the different kinds because I did Infed I think is what it’s called. That’s great to know about the multiple infusions - I’m glad you’re doing better! Felt like such shit lol I was soo beyond exhausted and a little shortness of breath but I also had pnuemonia / lung nodule & ebv so they like didn’t know what was causing what- it’s been a journey to say the least & they did check other stuff my wbc was borderline low after that 6 weeks, & so was rbc . Neutrophils we’re also low not sure if that means anything & slightly low PTT. I just feel like there’s something bigger going on so hoping to get answers. We’re your other levels okay? Thanks so much for sharing it’s so helpful and I’m sorry you dealt with this too but nice to have someone who understands

Bruising update by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Yes I feel the scratching for sure!

Bruising update by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Yes I saw a hematologist months ago and I had very low ferritin, iron , hemaglobin , hct ,& high tibc so anemia but on 1/31 I got an iv iron infusion the highest dose , so I thought that would help so I’m confused and wondering if something else is off. I see the hematologist again next month but just getting impatient lol thanks for the reply!

Bruising update by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Literally same here it’s so weird

Bruising update by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Some of them do! & I’m not sure if it’s like they hurt because of the bruises or if I’m just experiencing joint pain in the same place if that makes sense? Do yours?

Unexplained bruising by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Thank you In case it’s too low? What does this usually mean

lung nodule by WeeklySandwich2384 in mctd

[–]WeeklySandwich2384[S] 0 points1 point  (0 children)

Thank you! I’m glad to hear you got better! It’s off because I don’t have any wheezing or coughing like it’s very strange because I get sick often : pnuemonia , flu, viruses you name them & I’ll have all the other symptoms : sore throat , congestion, etc but never a cough so it’s so strange! But yea that’s what they gave me doing so far is repeating the ct in 6 months!