The same week I got shingles, I actually had my next appointment with Dr. Walker. By then I was feeling much better compared to the beginning of the week. When he walked in he said, "Really? Shingles?" I should have told him that I blamed him, but I didn't. We just talked for a little, then he had me hop up on that bed thing (seriously, is there a name for that thing?) while he did his exam. When he pulled up my pant leg and saw my shingles he just said, "Oh!" I started laughing and said, "Yeah, I know."

He then asked if I had questions. I asked him if this was a set-back in the progression the Cellcept had made, and he didn't seem to think so. I was taken off of the Cellcept by Dr. Carlson, and Dr. Walker just told me to wait until the sores had started scabbing over before going back on it. I have to admit, I was a bit afraid to go back on it because I don't want those dang shingles to come back. But he said that most people don't get them a second time, so here's crossing my fingers. He also lowered my dose of the Cellcept, so instead of six each day (or 3000 mg) he dropped me to five (or 2500 mg).

I did ask him how I compared to the other scleroderma patients he has seen, and he surprised me by telling me that I was on the more severe end. Of course, that has more to do with the type that I have than probably how I actually am. I also asked him if we found the Cellcept to work if it's something I would/could take for the rest of my life. He told me yes. Score! Looking forward to taking meds for the rest of my life.

One concern he did have was my lungs. Greg said that I wheeze at night, and I have been coughing a little bit more, so Dr. Walker scheduled another PFT for me. It is something that I'll be tested for about every 6 months or so anyway, just for  precautionary measures. Especially where the diffuse kind of scleroderma can get aggressive with the lungs, we need to keep an eye on the lungs. I seriously have been SO blessed to not have any lung issues. My heart breaks for those who have those issues. They are tough people for sure.

It was another good appointment, though. I told him that I forgot all the questions I had, though. Dang shingles.

He sent me down to get blood tests and a urine sample (which was fun, but I'll spare the details!) As the nurses poked me for the blood test I told them I had to take a picture. I think they think I'm a total weirdo, but oh well. Unfortunately, that arm stopped giving blood, so they had to use the other arm. They always have a hard time finding veins, and ones that will give blood. So I got poked twice that time. It wasn't really that bad. I've got tough skin...(Okay, bad joke!)


So I have been complaining about the size of the Cellcept, but the pill on the left is the antibiotic for the shingles. It makes the Cellcept (right) seem tiny.
Another appointment down. Next one is in July. Can't wait!

I had my next appointment with my rheumy on October 22. He just asked me how I was doing. Not really much new to tell him, to be honest. He talked to me about the next step of the process which was the medication that he thought would be best for me to try. He told me he wanted to try me on Cellcept. Cellcept is a an immunosuppressive drug, which basically is going to lower my immune system. To put some of my family at ease with this, here is what the John Hopkins Scleroderma Center says about immunosuppressive therapy,

The most popular approach to controlling the inflammatory phase of scleroderma is the use of immunosuppressive therapy. The rationale is that an autoimmune process is causing the inflammation and the downstream result is tissue damage and fibrosis. In this model, the fibrosis is an “innocent bystander” that is driven by the cytokines (chemical messengers) produced by the immune system. There are several drugs that are being used, but only a few well designed studies have been performed. These immunosuppressing drugs include methotrexate, cyclosporine, antithymocyte globulin, mycophenolate mofetil (aka Cellcept) and cyclophosphamide. A recent study suggested that methotrexate did not significantly alter the skin score (a measure of skin thickening) compared with placebo (no treatment). Cyclosporine is not completely studied due to reports of renal toxicity. The most promising drugs are mycophenolate mofetil or cyclophosphamide with or without antithymocyte globulin. Unfortunately, there is no placebo-controlled study (i.e., half the patients get the medication and half get a sugar pill) to define their exact role in treating scleroderma, but if used during the active inflammatory phase of the disease, they appear to work.

So there. In basic terms, the way I understand it, my immune system is attacking itself, so by weakening it, we're hoping to prevent the progression of the disease. He did tell me that it can take a while for me to notice any difference, at least 6 months. He started me on 1000 mg, 500 in the am and 500 in the pm. Side effects could include upset stomach and vomiting, which I was quite lucky to experience. I actually called in sick that next Friday. It's been a long time since I've thrown up. It wasn't too bad, but still gross.

Anyway, since I know you all wanted to know about that, he continued me on the Amlodipine, Baby Aspirin, and Omeprazole, then sent me off to do some blood tests. The last time he said that my blood tests showed high levels of inflammation in my muscles, so he was going to do more tests for that.

He also asked if I wanted to get a flu shot. I've never had one before, so I asked him if he recommended it. Since I would be taking the immunosuppressor, he said it would be a good idea. As he was leaving he asked if I'd ever had one, I said, "No, but I don't ever really get sick." Then I paused, and we both laughed, and I said, "Well, until now." Needless to say, I got a flu shot.

I had also been having problems swallowing. I have to chew my food really well so that I don't choke on anything. I mentioned this to him, so he scheduled me to have an endoscopy with Dr. Garg. It was scheduled for Monday, the 28th. I was a bit nervous because I had no idea what to expect. It was done early in the morning, I had to have a driver, and I got to stay home all day! WOOT! They had me change into a gown and slippers, gave me some warm blankets, hooked me up to to their monitors, sprayed some numbing spray in my mouth, then gave me an IV. That was the worst part. Then they gave me the anesthesia, and I was out. It was amazing. I haven't slept that well in a long time. Once I woke up (like a half hour later), Dr. Garg came in and told me that everything looked okay, with a bit of inflammation due to acid reflux. He doubled me omeprazole dosage, and sent me on my way.



I'm glad there was nothing seriously wrong, but then I still wonder why I have such issues swallowing, and why my throat hurts....kind of like with the rest of my body. Everything seems to be fine, but it still hurts. Oh well. Such is this wonderful disease I guess. I really can't complain too much. I could have it a lot worse!

I met with my rheumatologist on the 30th of September. I was a little nervous going into it, but mostly anxious. I had had a few people in my ward try to talk me out of going to him, because they weren't happy with him (though I never got an explanation why), but I decided I'd go and see what he was like, since he's the only rheumatologist in Logan and the next closest is in Ogden.


It was a good appointment. I actually liked the doctor. He has an interesting sense of humor, but the kind that I like. He asked me again the basic, "what's going on" questions that Dr. Carlson asked, and did a basic check of my ears, face, shoulders and skin. He confirmed that it was scleroderma, the diffuse kind. (I'll explain more about that in a different post.) He told me he wanted to do some blood tests, then scheduled some tests to check my lungs and heart to make sure the disease hadn't spread to them.

He gave me some more information, and talked a little about the disease and treatments, all  of which I totally can't remember. I just remember thinking the whole time, "Am I still going to be able to have kids?" So when he asked if I had questions, I asked, "Are any of these medicines going to kill my chance of having kids?" I know right? Of all the questions that I had over the last year and a half, that's what I ask. He didn't really give me a clear answer, but just basically said that I can't be on some of the medicine if I want to try having kids, which led to a conversation about contraceptives, sex, and that awkward stuff.


Of course after that I couldn't really think straight, and so the appointment wrapped up. Because it was all a little overwhelming, he only put me on baby aspirin, amlodipine (used to increase blood flow to help with the raynauds), and a low dose pain killer called tramadol. I was actually surprised he  prescribed that. I've had my reservations about pain killers, but he did say, "You don't have to be in pain all the time."

I think the most difficult part about this disease and these appointments is that I don't ever get a clear, definite answer on what is going to happen. Will I get better, will I not? But I also understand that it is what an auto-immune disease is. There are no definite answers. I just have to continue to have hope that "this too shall pass."