Now what? My neurologist said if SFN was positive that my Sjogren's needed to be treated more aggressively. Anyone know what she means by that? Guess I'll find out soon, but I feel a bit anxious right now, so I'm reaching out.
Maria
She might mean using an something to suppress the immune system, like prednisone, methotrexate, cellcept, or some other med. The up side of that type treatment would be be the possible slowing of damage, and maybe some improvement in some of your symptoms. The down side is increased chance of infection, plus other side effects, that vary by the particular medicine.
Good luck with your tests.
I think warmwaters is correct. I just received the same message from my Neurologist...that my Rheumy needs to do a better job of managing my Sjogren's. He thought I needed more aggressive meds.
Hope you get some answers soon.
SjoDry
I am sorry for your diagnosis...
I have SFN also. Symptoms are much better after IVig
Good luck!!!
IVIG is your best options with confirmed SFN. It is documented to help increase density of small fibers and help reduce symptoms.
I find my Sjogren's symptoms as well improve on IVIG.
I totally agree with Anita. IVIG is the way to go if your insurance will approve it. Some will and others require you to fail immune suppressants first. Glad you have a diagnosis. I understand the fear, but now you can get proper treatment.
Thanks everyone for all the helpful info. I researched everything. I see my Rheumy next week and I'll see what she has in mind after consulting with my Neuro. At least I can go in with some knowledge.
SjoDry: What is your Rheumy's plan of action...if you know.
Maria
For small fiber neuropathy it is usually the neuro, not the rheumy, who would prescribe IVIG. So whereas a rheumy may need to more aggressively manage Sjogrens that does not get your neuro off the hook completely regarding treatment.
Dear Maria, If your SFN is causing burning, tingling, stabbing pains (as mine does) a neurologist would also consider prescribing a drug for nerve pain. I take gabapentin (neurontin) but there are several drugs for nerve pain.
I doubt if a rheumatologist would even consider IVIG as a treatment since her/his main focus is on the underlying Immune System Disorders (and you have several) which are causing the SFN.
So increasing the suppression of your Immune System with methotrexate or prednisone, and using a biological, could reduce the attacks upon your organs/systems that produce the damage, like SFN.
And treating the discomfort of SFN should also be addressed.
A Neurologist might be added to your list of specialists. We all have so many, but we need them.
Keep us posted, Maria. All of this is part of our lives, and believe me when I say that we DO have LIVES. Thursday night I'm having dinner with one of my book groups. Friday I'm having lunch with my son's fiancee and her daughter. And over the weekend all of my local grandchildren (4) my son and his fiancee and their two dogs will probably be at our house more than once!
Life does go on, and managing our health is part of that, but only part. A 'new' condition can worry us when it 'pops up' but I think that everyone here will assure you that once it is integrated into our way of life, we share here, get support and love, and carry on.
Hugs, Elaine
Actually, my rheumy did prescribe IVIG, but did so because I also have Immunoglobulin deficiency. But she was aware of my neurological problems, and thought it would help. My rheumy is pretty good at looking at the whole picture, so she may not be typical.
Elaine, mine is causing those same symptoms, along with numbness and a creepy crawling feeling in my legs, but the pain is not unbearable yet, just annoying, but it is progressing. The only time it is really bothersome right now is when I'm climbing a hill on my bike. My legs get this painful tickling feeling that I hate because it slows me down or even stops me and all my cycling friends pass me! >:(
I would love to be prescribed something that would stop that feeling.
Also, I already have a neurologist on board and I guess it looks as if she's going to stay.
Warmwaters, Immunoglobulin deficient question. I have a low IgG Subclass 3 only. The rest are normal. Does that mean an immune deficiency? Came up in the blood work my Neuro did recently. She didn't mention it so I assume it's nothing. Was going to bring it up with my Rheumy at next visit.
Elaine, enjoy all the fun things you have planned this weekend. And not to worry, I know this is just another bump in the road and I won't let it stop me from enjoying the good life I luckily have.
Thanks again.
Maria