Hi, My tests for sjogren's are back with the lip biopsy not revealing anything and the sialogram shows very dry mouth and the main parotid duct is of normal caliber but the branches are diffusely narrow & demonstrate a withered tree appearance in keeping with atrophy.???
My Dr. wants me to go on an immune suppressant called imuran. This to slow down the muscles from becoming weaker in my feet & my hands. I did a strength test, my feet/ankle did not move. My hands register around 12 out of 30. So my question is would you go on imuran as it has serious side effects including breast cancer, skin cancer, liver problems and for the first 3 months you have flu like symptons or would you just let the disease take over?? Prednisone causes my sugars to be elevated to the point of becoming diabetic type 2. Not sure if there is another drug?
I should be on the IVIG treatments but the goverment has put restrictions on who gets that treatment.
The buTrans pain patch is working very well. It does not help the bouts of pain but it manages the daily pain to about a 6 or 7 out of 10.
My journey continues...Thanks for reading, June
I really don't know much about Imuran, but I have been on an chemotherapy drug, Methotrexate, for 15 years to keep my immune system down. It has has helped me for years.
It's side effects are really scary too, but luckily I haven't had much problems with MTX.
Imuran may really help, but it may take a bit of getting used to. You know that they report every potential effect that could occur so chances are you won't get them all!!
Maybe someone else can chime in on and help with some more info.
I am so happy that your patch helps but I do understand everything you say about the "journey".......I am on one too now, it's been 8 years with an escalation in all symptoms but I find such help and empathy in places such as this as there isn't much written about Small fiber neuropathy.
Please let us know what you decide and how you are making out!!
My thoughts are with you
The Following User Says Thank You to daisymaegrl For This Useful Post: June89 (10-23-2012)
Hi daisymaegrl, thanks for your suppport. I see my family DR. tomorrow. The big question is do I try Imuran? My family says not to. So if I don't go on any suppressant drug the disease will progress but if I take one it will slow the disease down and hopefully the pain goes down as well. My family wants me tested for MS as to rule it out. I was looking at LUPUS and did a quiz in which most of the questions I answered yes too. What are the tests for both diseases? I am scared to try Imuran and scrared not too.....June
I really understand your dilemma!! I was tested for MS, it was a CT scan of my brain that didn't show any white spots.
I still have questions about whether I may have lupus too. I have been diagnosed with RA and PN but all of my symptoms are similar to lupus. But my rheumy doesn't think so, so no more investigations in that direction!
I wish I could help you with your decision to or not to try Imuran. My PN is only in my feet and legs, not my hands yet, so mine isn't progressing as aggressively as yours.
I don't know of anyone on this med either. But I guess you really have to weigh what the experts say and your personal feelings. I didn't want to take any medications at all so I do understand your reluctance.
I guess you have to investigate it thoroughly and go from there!
Please let us know!! I send you good wishes and hopes that the answer comes clear to you soon!!
Thinking good thoughts for you!
The following user gives a hug of support to daisymaegrl: June89 (10-25-2012)
The Following User Says Thank You to daisymaegrl For This Useful Post: June89 (10-25-2012)
Hi daisymaegrl..Thanks for your understanding. I went to my family Dr. and he agrees to put me on imuran. I am so scared to try it. I read reviews that are good & bad, hair loss is a big side effect and bumps, warts , facial sores etc... as well as others. My children, sisters, are not in favor as well. I am having a MRI for MS...waiting for appt. I had a test for lupus and it is negative. I am so scared I don't know what to do. June
When I started Methotrexate, the list of possible side effects were unbelievable. I mean, it was so scary that I was petrified- hair loss, liver problems, mouth sores, nausea etc. But I didn't get any of those! Not a single one!!
So hopefully you won't have too many problems!!
lots of good wishes
The following user gives a hug of support to daisymaegrl: June89 (10-27-2012)
The Following User Says Thank You to daisymaegrl For This Useful Post: June89 (10-27-2012)