A New Treatment

Almost exactly 3 1/2 years ago I first starting noticing the itchy little blister/rashes that would come and go, my first ANA test (and second and third) was positive, I had butterfly type face redness, and lupus was suspected. I look back and think how my rheumatologist at the time--who is once again my rheumatologist--was simply being proactive in prescribing plaquenil. I didn't take it because I didn't understand "why" if I didn't have an actual dx and I was scared to start something I thought maybe I didn't need. Maybe it would have helped me, or maybe it would have affected me badly. Now I don't question him, or at least try not to lol. I trust him so much and am so thankful he is my doctor! 

I've not responded as well nor as quickly as Dr. S would have liked to see after rituxan (though I absolutely have had improvements as to my lungs!!), and the swallowing issue hasn't resolved; in fact it continues to progress. The progression is very slow, thankfully, but progressing and, I won't lie, it is a bit disturbing when water just won't go down. Other symptoms have returned as well, and while I have started having a good day or two (also I'm sure thanks to rituxan), Dr. S and I agree that I need a little more help, a "boost" of sorts.

Next week I begin another treatment called IVIG:

IVIG is a blood product derived from large pools of donated human plasma. IVIG boosts the body's immune system response, and doctors don't know the exact reasons IVIG works in some myositis patients. IVIG is usually reserved for cases resistant to other treatments, and people with inclusion-body myositis typically do not benefit from IVIG unless they have accompanying swallowing problems.--from The Myositis Association

I'm nervous but sure it will work out fine. It might be a rough week or so as it is 3 days in a row of treatments ( come see me!) and I've heard/read IVIG tends to have more side effects than rituxan. It tends to do very well for people and I do believe it will help, particularly in conjunction with rituxan, but I'm certainly concerned about side effects for myself, but especially for my kids, I feel so bad when I'm "down". What a journey this is turning out to be.

My Life Now as an Autoimmune Cocktail

I've been waiting until my oldest was back from Israel to write about what's happening. She's back safely in the US, so here I am!

It appears I have an autoimmune disease cause Dermatomyositis (DM) with lung involvement known as Interstitial Lung Disease (ILD), along with Rheumatoid Arthritis (RA). There is also Raynaud's Syndrome, Celiac Disease, and of course Fibromyalgia (though I wonder about that one...), and I tested positive for Sjogren's and Lupus is also in consideration. Fun times! lol.

 I am scheduled for surgery to have a deep muscle biopsy next week to confirm the diagnosis of DM and soon after will begin treatment with Rituxin, a chemo drug used as an immunosuppressant for both DM and RA and particularly for people with lung involvement. I've been on prednisone off and on since early May; each time I've weaned down and off all symptoms come flaring back (fever, extreme stiffness/swelling/pain, rash--to the point that getting out of bed without help isn't possible), so I'm now on a maintenance dose of prednisone that at least keeps me functioning! 

I'm not going to go into details just yet of any of the diseases until I get a final diagnosis,  because many of my symptoms line up more with one disease than the other, with lots of overlapping; this is actually extremely common with autoimmunes--it seems they like to each bring friends to the crazy immune system-gone-haywire party. In a very small nutshell, the 3 main players (as it appears right now): 

• DM (and possibly polymyositis PM)--immune system attacks the muscles in the body
• ILD--immune system attacks the lungs
• RA--immune system attacks the joints (and can also go after muscles and organs)

Right now the main concern is the lung involvement; I know that is why my rheumatologist has already put in the request to insurance for approval of the treatment plan before final diagnosis so we don't have to wait as long for that. 

Emotions are all over the place, though the main thing I'm feeling is FRUSTRATION. As my wrists and hands get weaker I'm dropping things all the time and it makes me crazy. I trip a lot more than my usual clutzy self always has because my ankles and knees tend to give out on me, and I've begun to have some balance issues that I can't tell are from the new dizzy sensations I get or something with my eyes. Typing is torturous at times as the bones on each wrist and fingers hurt to the touch. Each morning when I wake up I think okay, today's the day this will all be gone; I turn over in bed to get up and the pain in my knees tell me otherwise. I'm exhausted usually by around 11am; and where I used to be able to work 8, 9, even 10 hour days no problem now I seem to hit a brick wall after about 4 hours. I'm pushing through because I know the worst thing I can do is stop moving, I know I have to keep moving no matter how small it may seem compared to what I used to do and I'm gonna keep on keepin' on. 

I've already heard all the different ways this can be "cured," like juicing, supplements, willing it away, eating this/drinking that. I know people mean well and want to help but while I do believe there are some things that can certainly HELP some symptoms, medical treatment is what is needed. I'm sure many of you have seen headlines on social media "I cured my ______________ with this one ingredient!" Yea, nope. Read the full articles and/or research and you'll see probably 99% of the time they have and/or ARE taking some type of medical treatment. 

There is no cure for any of these diseases but the treatments have come a long way especially over the past few years. I believe in and trust my rheumatologist and am so ready to get this treatment party started!