I have been in a pretty consistent flare. Some days are worse than others but overall I have pretty much felt like throwing the towel in. In fact there are days I want to lay in bed all day and never get up. But I do get up because I have to (kids ready for school, take care of my baby, teach classes) and that's a blessing!
When people ask me what happens when I'm in a flare its hard to explain. Pain, swelling, stiffness, achy, fatigue, cloudy minded... are a daily occurrences but then times it by 100 and that's how I would describe my flare. I go into a "survival mode" and literally just try to get through one day at a time the best I can. About 6 weeks ago my flare started and this time it has stuck around. I called my rheumatogist and he was able to communicate with my local primary care Dr. and help me. I was able to get a toradol shot to take the edge off and then I started a round of prednisone. I took that along with immuran and all my other meds.
Did it help?
The first few days taking 3 pills a day I felt no change and wanted to give up. About day 5 I felt better but did experience some crazy drug withdrawal symptoms when I titrated from 2 pills down to 1 a day. I was nauseous, shaky, and panicked. A few days after completing the prednisone I felt good but then I have felt right back where I was :( I also started loosing my hair. And I mean by the locks!! I can only wash and blow dry my hair twice a week or I'm afraid it would really be in rough shape--so a little understanding on the bad hair days would be appreciated ;) I also have had more acid reflux so went on medication for that. I still have fatigued swallowing but usually only in the evenings....haha too tired to swallow is a pretty crazy feeling.
I wake up every morning more puffy and swollen/stiff than the day before. I don't remember being this bad since high school. My fingers look like sausages when I wake up and it takes about 90 minutes for the stiffness to go away. My drs always have me make a fist to determine swelling. I can't make a tight fist most mornings anymore due to swelling and tightness. Here is a picture I took last week when I first woke up. Spencer kisses me every morning before he goes to work and I am usually sleep-talking but he says almost every morning I hold up my hand and say, "Spence look how swollen my hands are. They hurt so bad."
Even my feet are swollen..they don't even look like my real feet at all. The swelling does get better as the day goes on but it used to go almost entirely away after the first few hours of getting out of bed. Its hard to live like this for the majority of the day.
At my Dr appointment I showed him my nail beds. I am getting lots of thickening and dilated blood vessels that rupture (the little black dots in my cuticles). That is caused from lack of oxygen. So Dr. Call decided to try a different medication for my Raynaud's disease called Norvasc. I was on that years ago but I developed such low blood pressure after being on it for a long period of time so hoping I can just take it during the winter and spring then go off it. Basically what it does is block calcium into the smooth muscle cells that line the arteries which relaxes arterial muscles and dilates other arteries of the body. It is a calcium channel blocker.
He also switched my steroid around. I went off Immuran--wahoo (it was a nasty drug that made me feel like a zombie with the stomach flu), and now I'm on Plaquenil-- it blocks inflammation. Since my Scleroderma has flared so has my fibermyalgia. I've been taking an anti-depressant called Effexor which helps take away the overall superficial pain. But, I haven't seen a huge improvement while being on it so we thought we would try one last time and pre-authorize Cymbalta through my insurance (they've denied it 3 times). Good news is that they approved!! Cymbalta is the drug of choice for my situation so this was super good news. I will continue taking Prilosec for acid reflux. Oh and I haven't been getting headaches like I did on nifedipine--yay!
I have been on these meds since November 19th...Have they worked?
Yes--Some! I am not feeling quite as tired. But pain has been super bad in my hands, feet, ankles, knees. My calcium deposits have worsened on my extremities. I had x-rays ordered and they found calcium deposits on the top of my patella and bone spurs on the back. I also have them in both elbows. On my left knee and right elbow the calcium is breaking through the skin and causing lots of pain...Oh my heck can I just hit my funny bone once a day in exchange and call it good? So, during Christmas break I get elbow and knee surgery.
AND...If that wasn't enough to soak up just wait :)
Since I have met my OUT OF POCKET MAXIMUM I requested to get my routine PFT done by the end of the year. That is short for a Pulmonary Function Test (lung function). I do these twice a year for early detection for fibrosis of the lungs called Interstitial lung disease, or Scleroderma can cause also cause Pulmonary hypertension. I have always been 95% or higher on my PFT. I dropped down to 80% lung function. I STILL haven't heard all the details of what the plan is but I am going to really push that we get on top of this. That is a big change in a short amount of time and I am not wanting to watch it drop in the meantime. Drug of choice for this issue is one called Cellcept or else there is Chemo. I will know more about this route later this week when I go in for a med consult. I had no idea you could go on chemo other than for cancer so that's something I have learned.
In the meantime my hands are swollen, my knees ache when I get up from sitting for long periods of time an cannot kneal, my elbows kill--even my shirts rubbing on them hurt, my swallowing is weak, and my hair is falling out...HAHA I'm a bit of a mess!
I truly believe that having something to look forward to helps see the light at the end of the tunnel. I asked Santa for halo hair extensions to help with my thinning hair and I can't wait!! So that's one plus :) But I'm going to keep on going and fighting hard.
Also, I have found SO many people on instagram and facebook who are close to my age with Scleroderma so that has been really neat to see their strengths to help with with my challenges. They are amazing women that help me to keep going. I will blog about them all on my next post :)
Last week I was in a horrible depression with all this news on my knees/elbows then my lungs so I really have appreciated kind words and support. I found this quote and OH MY HEAVENS IS IT TRUE! I'm looking forward to a good week :)
XOXO Britt :)
