Life with a Myositis Disease

The laughter and tears that come with living with Polymyositis

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Location: fort worth, texas, United States

Thursday, July 21, 2005

Last IVIg??

I am getting ready to go in for my (hopefully) last IVIg treatment. Everything has been going so well that I am truly hoping I am one of those 1/3 with Polymyositis that is able to go into complete remission. From the sounds of some of the statistics that I've seen, a general statement might go along the lines of 1/3 able to achieve remission, 1/3 have control over the disease through medication and occasional flares, and 1/3 have to continually wrestle with this disease. I see so many of my friends at the TMA website that fall into that last 1/3, not to mention those who have DM and thoughts are with them. Their bravery and hopeful approach to life is truly inspiring (especially you, Jack! Thanks for the recipe - I'll have to try it and see if I can do it without destroying it!).

On a rather comical note, my house here in Seattle went onto the market on two days we had 3 offers!! My realtor is coming to my rheumy's office to bring me the paperwork. I can't wait to see her reaction when she comes into the infusion room and is faced with rows of people in Barca Loungers with sleeves rolled up, attached to IV poles! LOL!

I am beginning to be cautiously excited over my move to Texas....I still have some doubts as
to my ability to deal with the heat. But WOW - getting twice the house for half the price is worth some gleeful anticipation. Plus, it feels so good to feel valued again. It had gotten so stressful and ego-damaging with my employers, and my new boss is so excited to get me that I'm beginning to lose that beaten-dog feeling.

Of course, it helps that the recent statistics that were released shows my store at the top of the list. AND they have ME training a new manager instead of the trainer who has had her for three months without providing her with the training she needs. She asked my boss if there was any way to get me to stay for a month since she is getting so much more information....a small, petty part of me hopes that my boss will soon regret 'disposing' of me because of the thought that my illness could impact my performance. Since it clearly hasn't, I hope at least she learns not to leap to conclusions when someone becomes ill.

Well - I'm off! I hope everyone is doing well!


Blogger job opportunitya said...

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8:55 AM  
Anonymous Anonymous said...

Hi Siobhan,
How are you doing? Hopefully very well. I have recently been diagnosed with myositis not specifically PM or DM as my muscle biopsy was inconclusive but my specialists are going with asymptomatic PM. I originally started my treatment with high dose prednisone 100mg and tapering down by 5mg every 2 weeks. I also am on methotrexate to help with the taper. At the time that they started treatment everything that you had written about sounded so familiar. I had to have someone help me get dressed, I couldn't get up from a squatted position, my distal strength was so bad that I couldn't even sort through papers. I noticed some results in the beginning with the prednisone and methotrexate and I regained quite a bit of function- I would have to say that I regained to about 50 percent of it back. But it stopped there and the prednisone was actually causing me weakness for about 6-8 hours after taking it and was causing my legs to worsen for on the stairs. The methotrexate was also causing some of my liver tests to come back elevated and my Rheumatologist cut that back. My Rheumatologist figured the prednisone was causing the weakness and myopathy due to the length of time on it and high doses. She recommended IVIG and started the process of approval. I got the appointment and went to the hospital. They started the IV in my arm and called the lab to release the IVIG. There was a problem with the approval and I waited in the chair for about 3 hours while my Rheumatololgist was on the phone with the board head that monitors the usage of IVIG and makes the decision of who gets it. I eventually did get the treatment but just the one for the time being until the proper approval could be made. It was amazing- 2 days earlier and I could barely get up the stairs without pulling myself up with both railings- 2 days after the treatment and I could get up the stairs without the railing. 2 weeks into the treatment and I was assessed by my Neurologist and they said that the only evidence that I had a muscle disease was a tiny bit of weakness in my right hand distally. I was able to squat and get up, walk on my heels and toes, carry things up the stairs, move up the stairs quickly etc.
Both specialists recommended further IVIG treatments especially with the success with the first one. It went through that approval process and to the head of the board and he denied further IVIG treatments due to other toxic, cheaper treatments were not tried. I am going on 7 weeks now and am finding that I am getting somewhat weaker(slowly) I can still climb stairs and do things but when I take my prednisone everyday I am back to the 6 hours of weakness. I am just wondering if you can give me some info on your IVIG treatments that you went through and how they worked as well if you went into remission and for how long. Sorry for the long letter-hard to write about so much without it being long. I am seeing my Rheumatologist tomorrow and looking at a way to pressure the board to look at reversing the denial of the IVIG as they have the evidence that it is a treatment that definitely worked with my and should be continued on that fact alone. Again, I hope everything is going well for you and looking forward to reading what you have to say.

MB from BC Canada

10:40 PM  

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