New Information
Posted by: Admin on: March 24, 2009
It’s been quite a while since I posted anything. We’ve had a few changes. She came close to 3 months off the prednisone, when the joint aches became too much. Muscle weakness was creeping back into the picture. She has started to lose alot of hair also.
On 3/19 she saw a rheumatologist for the first time. This doctor felt that since she had many +ANA tests, elevated RA, low white blood cell count, butterfly rash and joint pain that she met the criteria for systemic lupus (SLE). He started her back on the prednisone, 15 mg a day and also gave her some meds to take at night so she might get some sleep; something that has evaded her for quite awhile. She goes for a dexa scan this week. She has also developed an unusual rash on her feet. The dermatologist’s biopsy was inconclusive, and she will attend grand rounds next week. All the dermatologists will look her feet over;there may be a doctor that has seen this before to make a diagnosis.
A Short Update
Posted by: Admin on: December 28, 2008
Over a month has passed since my last post. On Wednesday she will finish her last dose of prednisone (yah!).
Her only complaint seems to be that she is exhausted, so we’ll keep an eye on that since it was one of her first original complaints last January.
She is climbing the stairs again, even though she has to hold the railing and push on her knee to do it. I think it’s a balance thing. She goes down the stairs sideways so that she can “cling” to the railing. We moved her back into her bedroom on the second floor and now she feels “normal” again!
This was the best Christmas gift I could’ve received.
Unless There’s A Complete Turn Around….
Posted by: Admin on: November 19, 2008
Another quick visit to the primary care dr., unbelievable it’s been a month already, since our last visit. My daughter is still unable to get out of a chair, like any other person would, and she still is unable to use the stairs. The doctor places a note in her chart, out of work through February, and I’ll see you back then.
IVig Begins…? Myopathy
Posted by: Admin on: November 18, 2008
IVig treatments begin and she will have five visits. She seemed to tolerate everything pretty well. During the treatments she only had a couple of minor headaches, but nothing a little medicine didn’t take away. The second day of the treatments, the neuromuscular doctor stopped in to speak with us. He told my daughter that he had several doctors review the muscle biopsy and it was showing a autoimmune nerve problem, rather than muscle problem, as originally thought. He said that steroids and IVig are often used for nerve issues, so he would be continuing the plan she was on. He wasn’t able to give an exact diagnosis yet, but a diagnosis of a neuropathy was better than that of myopathy. He wanted another EMG, making my daughter very unhappy. He would be in touch soon.
Flu and Pneumonia Shots
Posted by: Admin on: November 18, 2008
A quick visit to the primary doctor and a flu and pneumonia shot are given. We are asked to have anyone that may come in contact with my daughter to have the flu shot.
Muscle Biopsy #2
Posted by: Admin on: November 13, 2008
It’s the first of October, and the second muscle biopsy is performed. My daughter states that this biopsy was much more painful than the first. Three large samples were collected and we expect the preliminary results to return in 10-14 days. The doctor says that the blood work done last week was normal, and he has decided to make a change in the order of treatment. She will continue the prednisone, and he wants to do the IVig before the non-steroidal medicine. If she has a reaction, he’ll know it’s from that. If the insurance company approves the treatment, the doctor hopes to get her in for them within the next couple weeks. The treatments are done for 5 days and if the insurance company also approves, it can be done on an out-patient basis. He says that many patients see an improvement after 1-2 weeks. If it works, they can do “boosters” on a monthly basis, if needed. He will be in touch regarding both the biopsy and the IVig.
Perhaps The Start Of A Plan?
Posted by: Admin on: November 13, 2008
It’s the end of September now and we have arrived for the next neuromuscular appointment. The doctor begins the appointment by giving his report to my daughter on the MRI which was normal and the last batch of blood work, also normal. He tests her arm and leg strength and notices a definite improvement. Since her muscles (mostly in her arms, her legs won’t do a thing)are responding to the prednisone, he feels strongly that it’s a treatable inflammatory myopathy now, rather than a thyroid problem, but he still doesn’t know what type of myopathy it is; another muscle biopsy will be performed next week. He wants her to continue the prednisone, possibly for several more months, and to start taking calcium with vitamin D. Next he plans to prescribe a non-steroid immunosuppressant drug called imuran after the biopsy is done. Our understanding was that imuran will eventually replace the prednisone because it has fewer long term side effects. He also said that if the biopsy confirmed an inflammatory myopathy, he would do another treatment called Intravenous Immunoglobulin. IVig is a infusion of antibodies that are obtained from thousands of donors. The foreign antibodies confuse the immune system, reduce the body’s production of antibodies and temporarily stop the attack on the muscles. This would be an inpatient treatment and my daughter would be there three to five days, this being nothing she wants anything to do with. He orders yet another round of blood tests, to serve as the baseline before she starts the new medicine. My daughter advises the doctor that we have finally heard from the Endocrine department, and they’ve given us an appointment in March ’09. The doctor says to keep the appointment for now, but he now doubts that it is thyroid related.
The MRI
Posted by: Admin on: November 7, 2008
It’s mid-September. The [very lousy] insurance company gets around to approving the MRI and my daughter finally gets an appointment. We arrive for the evening appointment at the hospital. We don’t wait very long and it’s time to go back. My daughter takes me, to help her change, and the tech would take her back to the machine. I could have gone with her, but, I decided to go back to the waiting room with my husband and her boyfriend. We waited, for what seemed like forever; it was of course only an hour or so. When we left there was nothing new known. I guess we’d have to wait until the neuromuscular appointment the following week.
