UCTD or MCTD (newly diagnosed but not new to these problems)

Have you recently been prescribed prednisone? That is what comes to mind as the most likely cause of the racing mind. If so, what dosage? It slows down as you become used to it.

I, too, was relieved when I finally got a diagnosis. Before that it seemed like maybe it was all mental and I was imagining it or something. I never thought I'd be grateful for a diagnosis of anything so potentially serious and chronic.

Some of the racing mind is likely because you are reading about these diseases and reeling from the potentially serious situations that can develop. I urge you to take the educational process slowly. Stick with what is happening NOW, try not to get ahead of your body. In many cases, the more serious symptoms never develop, especially if you are being wise about your health and your activities.

Take some time to be still and calm - will help racing mind as well as high blood pressure!

Hopefully some other members will come along shortly yo chat with you. This forum is not as active as it once was.

PS. I also have Sjogren's and Reynauds.

It WILL be okay.

In my case things got very slowly worse after initial diagnosis -- I had severe cognitive impairment (similar to traumatic brain injury, to summarize, they measured it as a 15 point drop in IQ). But I just kept on doing the "next right thing" and now my brain is probably back to 95% of what it was (probably 75% at lowest point) and my body has similarly recovered.

They don't use the word "remission" with Lupus, they say disease activity is "quiet". Mine has been relatively quiet and I've been med-free for 3-4 years now. Too late to save my career or my business, but grateful to be where I am.

Has the Rheumy prescribed you anything?

Generally they start with Plaquenil (inhibits progression of auto-immune diseases) and Prednisone (to knock down any inflammation you might have).

Then they try one of these three: Imuran, Cellcept, or MTX. If the first one tried doesn't work, they move on to the next. Imuran did nothing for me, Cellcept was my miracle.

Yes, if years on MTX has not helped, I am certain your new rheumy will be trying something different!

However, be careful in suggesting things to the Drs. I've found it best to ask, "Should we be trying something different?" gently and only suggest specifics if absolutely necessary. Going in and demanding to try something specific is very off putting to the Drs, and a good Dr will be developing an idea of how they want to attack your issues - you don't want to interrupt the logical, methodical approach they will be using.

Prior to Lupus, I had a software engineering business (not a lone consultant), was a marathon runner, and was finishing my dissertation for my PhD in computer engineering. For years they claimed my exhaustion was from living my life, they were wrong! Ha! (My Raynaud's has always been minor, and I live in Atlanta, where it is very warm!)

There are also meds beyond the Imuran/Cellcept/MTX level. These include Benylsta and IVIG - the 'next level' in my mind, and I am not as familiar with them.

Lynnwood, I can't thank you enough for reaching out to me. Or responding at my reach. Either way I am repeating myself but this site has really been so helpful in a rough time. Your journey is inspiring even if it is not the road you wanted or chose. I am accustomed to the physical issues I have had with joints, etc. but the mental confusion is really throwing me. I teach online now but was a practicing professional for many yrs. Single mom. Special needs son as one of twins. And I always managed everything to some extent. Now I am walking in circles forgetting to actually turn the dryer on. And not just one day but many. I know being in the process of getting diagnosed fully is stressful and sleep has been an issue, meds, lots of reasons but I know fog and confusion and I am hating it. I have several lists for every little thing right now. My husband is a big help but I am the one who runs things usually and we all like it that way.

Thanks again, please stay connected. Anybody else out there want to share their stories, advice, anything?

I stopped driving about 4 yrs ago. I was having trouble processing all the sensory input I think. I thought it was vertigo but not really. I don't have any close friends that live anywhere near me and really they aren't close friends any longer due to time apart (I moved to FL from NY in 1999) but family other than my husband were pretty judgmental. Still are. Maybe when I have a clear diagnosis I can give them reasons other than I am 'scared' to do things. I personally think that somebody saying they just don't think they can drive is reason enough that they should not. Luckily my husband retired around then and loves to drive me places. Except that I am the worst passenger due to the same sensory issues. I learned to recline my seat, use a pillow and keep my eyes closed. Makes us both happy. But it really is weird.

I agree about prioritizing. And the separate lists is a great idea. I am working on the acceptance part. My husband is very good and supportive most of the time. My mother is not but that is OK and I will have to tell my kids more I am waiting to have something more concrete. Not easy. I know this is not my fault but I don't want to disappoint anybody. But I do know that is the way the cookie crumbles. I am thinking about the disability. I hate to give up my job and want to continue until I can't. Working from home does make it much easier to take breaks, not dress nicely or shower, etc.

How have you gotten to the place you are? Does that kind of improvement really happen? How?

I did my first yoga exercise today, laying on the floor feet up against the wall for 15 minutes. Oh I feel so good!! First time I have relaxed in a long time and my blood pressure was normal. So...what do you credit with the level of health you have achieved, with no meds any longer and all?

Bsime, thank you. You continue to be an inspiration!