Thursday, September 14, 2006

IS IT WORKING?

Is my new treatment working? I realise it's something that takes months, even years to know the full effects of, but everything so far is pointing to a big fat NO. It's been about 10 weeks since the start of Diltiazem therapy and after an initial settling of inflammation, the deposits are back with a vengence. Not that they ever went away at all.

The large plaque on the back of my left upper arm has increased in size. It was progressing towards my elbow joint and was pinching when I extended my arm. I went to my doc on Tuesday and he thought we should try debriding some of the calcium from the area to stop the pinching. It was much harder and deeper in there than he thought but he did his best. Unfortunately I've developed some inflammation in the area with possible infection making it very sore. Now I can't fully extend my arm at all! I'm hoping it will settle down soon.

I'm seeing my rheumatologist in Melbourne on Monday for the first time in over a year. Hopefully we can come up with some sort of game plan. He thought over a year ago that my disease was "smoldering" at a very low level and would fizzle out soon, with some resolution of calcium deposits. Unfortunately that hasn't happened at all. It will be interesting to see what he thinks now. Will more immunosuppression help? Is there no hope and I'm destined to become disabled?

I'm seeing a psychologist tomorrow for the first time. It's been very stressful dealing with my health issues, moving to the other side of the world, getting married (which was wonderful though) and starting a new job/not really liking my job. My mental health is just as important as my physical health and one most certainly effects the other. Trying to keep a positive attitude is exhausting ...

Monday, August 14, 2006

PRESENT DAY

I've been in Australia since the end of September 2005. Making a home with my fiance and now husband Bob has been absolutely wonderful. The town I live in, unfortunately, has limited access to specialist services. A rheumatologist might come here once a month, if we're lucky. The nearest bigger city, one hour away, doesn't even have a full time rheumatologist.

To combat the no specialist problem I've been seeing a GP with extra qualifications in dermatology and a keen interest in my condition. I don't mind seeing someone without experience as long as they are willing to research and seek guidance. And that is exactly what he's been doing. It's so wonderful to have a doctor actually interested in me!

We started Diltiazem 240mg daily about 6 weeks ago. We had to do something because my calcium deposits were just getting more and more out of control. I was getting so frustrated with the whole disease. I'm a young, newly married woman with a career that requires reasonably good health. I was beginning to panic about what I would do with my life if I wasn't able to work as a nurse. What profession would I do instead? Should I start making a career change now, just in case? Should I have children now, in case I'm not well enough to do so in the future? All these questions ...

So is the Diltiazem working? Who knows!? These things take time. I'm thinking perhaps the deposits have stopped getting bigger, which is a start. I also restarted Fosomax at the same time. And I've been on Prednisone for a few months now. After a few years without a flare, I had one. I feel like a fraud calling it a "flare" because mine are never nearly as bad as the ones I hear about. I can still move and work but everything is just slower. My arms and legs ache, energy level drops and I notice things like more effort required to get up from a chair or not being able to squat. Those quad muscles really feel it. My CK was elevated for me, but not in the thousands like it is for some people. Does that make it any less legitimate?

I have also been seeing a Naturopath for the past 2 months. We've only had two visits so far but I am really impressed with this woman. As someone who works with traditional medicine every day, I have been very skeptical of the alternative. Susan came highly recommended by a friend and I can certainly see why. She spent an hour and half with me for our first meeting. Having experience as a clinical diagnostician, she knew all about my condition right away. That's more than most doctors I have met. And she likes to work in combination with traditional medicine. What has she done with me thus far? I'm taking an amino acid supplement and trying to eliminate dairy from my diet. She says it's not about the calcium in it, just that for some people (and she thinks perhaps me included) dairy doesn't agree with the immune system and has an adverse effect on the skin. Although cheese and chocolate (which contains milk) are my two favourite things in the world, I am willing to give it a try!

So here's the good news. Before I started all these new treatments, I had 6 or 7 calcium deposit sites open and oozing and generally being a huge pain in the bum. I now have only 2 sites open. Whether or not these treatments have helped or whether this is the natural progression of things, I don't know. I'd prefer to think the treatments are helping.

Current meds:
Fosomax 70mg once weekly
Plaquenil 400mg daily
Diltiazem SR 240mg daily
Amino Acid supplement daily
Predisone 10mg daily
Cephalexin 500mg twice daily

Tuesday, August 08, 2006

IN THE BEGINNING PART 6

April 2004

I arrived in Australia in pretty good health and continued that way for awhile. I won't go into my whole Australian experience, as this blog is primarily about my health, but I will say that I fell in love with my now husband! Making the move Down Under was obviously the right move.

It became apparent that my move was good for my health in some ways and bad in others. On one hand, I actually felt my Australian GP and rheumatologist actually cared about me. My GP and dermatologist in Canada were very good but I feel my primary caregiver Dr. T, as previously mentioned, couldn't have cared less.

The rheumatologist in Melbourne, Dr Hall, was the first to actually suggest that I might have the juvenille form of dermatomyositis. Even if it wasn't, it was behaving similarly and he therefore contacted a pediatric colleague of his to consult about treatment. Actually asking for advice from someone else? Astonishing and a very welcome change. We decided to try Warfarin ... something about it interrupting calcium-phosphate binding and hopefully reducing my deposits.

The warfarin didn't seem to do much good at all after 6 months. In fact, my deposits were continuing to get worse and I even wound up in hospital with a bursitis in my right knee. My health insurance in Australia was the bad part. It was so frustrating dealing with all the health insurance details.

After my year in Australia was up I went home to Canada to sort out my visa to return to my then fiance Bob. When trying to see my rheumatologist at home, I was refused saying it had been too long and I needed a new referral. After getting a new referral, the receptionist (rude as always) informed me my appointment was in 5 months time! She didn't care one bit that I would be out of the country by then. "Nothing I can do" she said but I know very well as a former medical receptionist and as a nurse that she could absolutely do something. Who needs him anyway? I said to myself and decided I didn't need to see him while I was at home. And so I didn't.

Sunday, July 16, 2006

IN THE BEGINNING PART 5

So I contacted Dr T's office at the beginning of September and was told I needed to make an appointment to see him, which wasn't until October. I said, "There must be a misunderstanding, Dr T told me to call and arrange a time to pick up the prescription. He doesn't need to see me." I was calm and not at all a difficult person but you'd think I'd asked for a million dollars! She absolutely would not listen to me. I was so upset I cried after ending the phone call. Doctors are there to help us, not make us feel like we're being a nuisance! After writing a letter and sending it by fax explaining the situation (in a very politically correct and non-blaming sort of way) I quickly received a call back from the receptionist stating that Dr Thomson did indeed want to see me in person and the previously stated appointment in October was no longer available and it was now a week later than that to see him. To this day I don't know if he did receive the letter.

After seeing Dr Thomson in October we decided not to start Cellcept after all. It was mega-expensive and I was planning to go to Australia in the new year to work. No way I could afford both. So we decided to try Methotrexate instead. Cheap as chips but requiring frequent blood testing. I asked Dr T about Diltiazem to decrease the calcium deposits but he stated he wasn't convinced it would work. As I was leaving, I didn't push the issue.

2004

Dr T and I spoke about finding a rheumatologist that I could see in Melbourne. He said he had a rheumatologist friend in Australia that could recommend someone but he had to contact him first.

And then I waited, and waited, as usual for Dr T to contact this person. He stated he couldn't find his contact information. I found contact info in 30 seconds searching on the internet and sent it to Dr T. He stated his friend didn't get back to him. I started to doubt that Dr T had contacted him at all.

At the beginning of April I had my first calcium deposit flare up, break open and leak out a chalky white. It freaked me out and stressed me because I was leaving soon. I saw the lovely Dr Haydey and he reassured me.

Dr T and I decided to stop Methotrexate as we hadn't seen anything particularly promising and the risk/cost of blood testing didn't outweight my possible benefit at the time.

At the end of April I headed for Australia ...

Sunday, June 18, 2006

IN THE BEGINNING PART 4

2003

The Mayo clinic was prepared to give me an appointment the week after I called! Getting in to see Dr T would often take a month or more, even if there was something wrong. I notified Dr T that I was going to Mayo Clinic because we hadn't heard back from Toronto and I was anxious to begin new treatment. I asked him to write a referral letter to the province of Manitoba in support of my request for funding for the Mayo Clinic. He refused, saying that, "It's frowned upon to admit that something can't be treated within the province." I called my dermatologist Dr. Haydey and he said, "Anything for you, Catherine." What a difference!

The Mayo Clinic visit in February was a huge deal. My parents shuffled around their finances in case the costs were too great. They both came with me and were extremely concerned during the whole process. I saw a rheumatologist there who gave me the first hint that I may have the juvenille form of dermatomyositis. He didn't say you have JDM but he did say that my case was strange and was behaving more like JDM, even though onset was technically at an adult age. All of my doctors have been confused by the extensive calcinosis despite relatively low underlying disease activity.

The Mayo Clinic doctors recommended Aluminum hydroxide, Alendronate and Cellcept. I was so excited to actually have a new treatment option from people I held in high regard. After returning home I thankfully was able to have the costs of the trip reimbursed. The bad news is that it took me until April to be seen by Dr T. Even though the Mayo Clinic doctors recommended the medications, my home doctor still had to prescribe them.

After finally seeing Dr T in April, we decided to start treatment. I started on the aluminum hydroxide and alendronate straight away, but Dr T had to get approval from the province for me to take Cellcept. And then I waited. And waited. And waited. I next saw Dr T in August at which time he told me the drug had been approved. Here's the BUT. He was going on holidays for 3 weeks and didn't want me to start on a new medication while he was away. His instructions were to call the first week of September and he would write the prescription for me and I could pick it up. No appointment necessary. I even said to him, "Can you let your receptionist know so there's no confusion?" And he said not to worry.

Thursday, June 15, 2006

IN THE BEGINNING PART 3

2001

After seeing Dr. T in April, I cruised along on Plaquenil for some time. The muscle weakness was pretty well resolved but the calcium deposition continued. I had a wonderful dermatologist at this time named Dr. Haydey who did everything he could to help me. Unfortunately, it wasn't something he'd seen before. In fact, none of the dermatologists in Manitoba had seen it before and I was invited to their rounds. I was glad my condition could be a learning experience for them.

2002

I saw Dr. T and Dr. Haydey, very concerned about the aggressive calcium deposition. Dr. T may as well have shrugged his shoulders and said "I dunno". He did mention a colleague in Toronto who may have some insight into my condition but would only put me in contact with her if I was "going there anyway". I decided to go there as I had a friend I could stay with. Let me mention that I subsequently found out that the province could possibly have paid for the trip if Dr. T had admitted he didn't know what to do and needed another opinion.

In August I saw this rheumatologist in Toronto and was advised that she had seen some success with Methotrexate and Warfarin. She would write this in the report and forward it to Dr. T. I saw Dr. T some time later and he still hadn't received a report. He did not want to start the medication until he had received a report.

Months passed and after asking Dr. T a few times for the report and him saying that there's no response from the other side, I finally gave up on Dr. T. The calcium deposits were extensive. I was anxious that we weren't doing anything. I called the Mayo Clinic in Rochester and made and appointment.

Wednesday, June 07, 2006

IN THE BEGINNING PART 2

October 2000

After my first visit with Dr T I was even more confused and desperate. He said I might have Lupus, or Mixed Connective Tissue Disease or some autoimmune disease yet unspecified. He didn't want to give me any medication to make me feel better because he wanted the results of an EMG before beginning treatment.

Now here is where the Canadian health care system "gives me the sh*%s" as the Aussies would say. The soonest appointment for an EMG (electromyography) was in February! I literally broke down crying. I know it runs on order of priority but when a 21 year old is having treatment delayed for this test and her mother is putting her socks on in the morning because she can't bend down to do so, how is that acceptable? If I had a good doctor, he may have called and pulled a few strings. I got the impression, however, that because I could still walk & didn't have internal organ problems, that Dr T didn't take me very seriously.

I battled on until February and actually improved somewhat on my own. The now named calcium deposits in my arms (diagnosed by biopsy) had spread and were now present elsewhere as well. After my EMG I called for an appointment with Dr T and couldn't get in to see him until April! Again, I broke down in tears. There was something wrong with me and the one person who could help me was hopelessly inaccessible.

April 2001

A year after my symptoms first started, I saw Dr T and was started on Plaquenil. His statement to me was this: I'm not entirely sure what it is but regardless we will treat you the same way. In my mind I'm thinking, "If you were going to treat it the same way then why didn't you give me the Plaquenil back in October?!!!"

AND SO IT BEGINS

It's a long story really. I think I'll have to tell it in spurts.

My purpose for starting this blog is to document my battle with Dermatomyositis, a rare autoimmune disorder affecting the skin and muscles. My husband Bob thought it might be therapeutic as my disease is getting worse and I have been a bit down about the situation.

In the beginning ...

April 2000 - I had several immunizations in a short period of time in preparation for nursing school. Perhaps a trigger? We're not sure. Shortly after that I went to Australia on a much anticipated backpacking holiday. I remember being very tired the entire trip. After returning home I developed pains in my forearms. We thought it might be carpal tunnel so I quit my job at Safeway (repetitive strain and nasty customers were taking their toll).

Over the summer I gradually got weaker to the point of being unable to rise from a chair or climb stairs without great effort. I also had a rash on my face and a few mysterious lumps in my upper arms. After seeing my GP, I had my first visit with a rheumatologist. We'll call him Dr. T. I wish he was as cool as Mr T, but alas he was not.