Thanks for responding. Wow, you just made me feel better!- Yeah, I kinda thought that I need to go up for a bit, and especially with the Christmas season coming, I really want to feel good.
I just wish I knew if my symptoms were part of this illness or something new and to see the Dr about. Unfortunately, not much was told to me at diagnosis, and I admit I didn't want to ask much. I was told though to try to stay away from the internet, because alot of it is not accurate, and much is doom and gloom. So of course I immediately went to the internet, and felt so scared until I found this forum, and read the postings. I am so thankful for people like you.
I increased my prednisone to 2mg on Wed and am just starting to feel a little better(thank you for the advice) My hands are still quite swollen but I do get
some mobility throughout the day. I have a Rheumy appt for the 8th, so I can get on top of this. I do have a question for those with MCTD though;
I notice and have read that Raynaud's is a main symptom, but I do not have that. Are there others like this?
Hi Again Ginny and hello to you Bill
As for this crapshoot, it really makes me paranoid of every little ache, discolouration etc. I am trying so hard to just let things be and concentrate
Regarding my Prednisone taper, I think I have been fortunate because when I was diagnosed last November I was only put on max of 15mg daily and only for a short time, then I was on a gradual taper. The problem I had was I never seemed to be able to get below 5mg without severe pain. My Rheumy switched me from Plaquenil to Chloroquine and kept me on 5mg and started a very slow taper. This worked great, and only started to get swelling when I reached 2mg a day(that was Oct.). My Rheumy told me to stay at 2mg for 1 month then reduce to 1mg daily for a month, and then he would follow up.
Well, 3 wks into the 1mg taper is when I started with the bad hand swelling and stiffness and asked my question about it. As I mentioned just giving myself a few days of 2mg seems to be helping abit. Aside from this I can't say I am suffering with much pain. Of course I have upper arm muscle aching from time to time and the odd sore knee but my mobility is like night to day compared to fall of 2007.
Post Edited (BumbleBee1) : 11/30/2008 11:20:36 AM (GMT-7)
Wow- reading these posts makes me realize just how new I am. This is my second Rheumy and I found him through a search. He is actually a department head and also head scientist at our City's major health network. As for his reasoning, I can't answer that, but luckily when I call I get fit in, and originally I was going to see him next week, but after reading these posts I called today and am seeing him first thing tomorrow morning. Plus the fact that my mobility is really declining. I have taken notes from both of you and am going to ask for copies of my labwork tomorrow. I just want to clarify, what he meant about the internet- he was referring to outdated info or opinions that often plague the internet. By no means did he say anything about forums and actually encourages to me pursue postive support. When I first saw him I suffered from severe anxiety and depression. The anxiety started when I saw a naturopath that questioned why I thought I had MCTD and had I been tested for ALS as it had some of the same symptoms. Needless to say, I went home, got on the internet and preceeded to start getting severe attacks, and having to wait several weeks for my neurologist's appointment only brought to the lowest of lows- thus his comment about the web.
Bumblebee, I don't know why he hasn't added other anti-malarials?- I do know that I have to be watched very carefully with the chloroquine, as I have pre-existing issues with my eyes; I have occular Toxoplasmosis, and because of previous medications I also have a cataract.
Well, tomorrow I will be asking the questions, I should have been asking awhile ago. The knowledge and experience on this site is so helpful