Have I got this right?

[anita]

Thanks Elaine for posting this link.  Dr. Birnbaum is my doctor and I was planning on adding the link and just forgot.

This spells out the many neurological 'complications' of this rheumatological disease...and there are MANY.  For some patients, the neuro symptoms are the most troublesome.   As the article states at the beginning, Sjogren's Syndrome can cause inflammation and damage to BOTH the CNS and PNS.

I too have taste and swallow issues, and periodic thrush.  I don't know if these are from the Sjogren's or the neuro complications...maybe a little of both.

You are correct, Mat, about the quality of the saliva and tears that matter more.  This is where dental issues come into play (due to lack of proper saliva and high bacteria level).  Same for eye issues being due to improper tear composition. 

Prednisone is a double edged sword...makes you feel good, but comes with a ton of problems.  Just not worth it.

It doesn't sound like the Cellcept has made any huge difference.  But it may be controlling progression more then you realize.  Had you not been taking it, things might be much further along at this stage.  Then again, you may be at the same place.  It's just an unknown.  Do you plan on continuing it?

[Deb 27]

MAT, in my experience, most patients know way more about the disease than doctors if they are engaged  patients. 

Providers who do not listen to patients are poor providers! My policy for that is walk away as quickly as possible. I wish we didn't have to pay them if we were dissatisfied with their services.     

[Carolina]

I take the tiniest amount of Methylprednisolone (about 30 mg over a 28 day period) in order to tolerate my monthly IVIG.  It causes very few side effect at that level.

I have had to give up my dearly beloved Cymbalta as it causes the side effect of myoclonus (jerking of my left side) and syncope (sudden collapse to the floor).  The syncope was the dangerous effect, and forced me to give it up.

I began taking Amitriptyline last night in place of the Cymbalta.  I hope it is as effective against the pain of my osteoarthritis.  Time will tell.  My current dose is very low, 25 mg, as I built up to find the right dose, if there is one.

At this rate I will become unable to take everything!  Well, that is just not true, I hope.  But I have negative reactions to many things now.   I'm glad that at 75, I may not outlive everything I take for relief.

Regards, Elaine

[irish]

Just a remark about wondering if cellcept was worth taking for the dysequalibrium. The answer, I believe, is yes as the reason for the cellcept is to slow down or halt the autoimmune attack on the body. Some of the symptoms we have can be more dangerous if they get worse so it is to our advantage to have these antibodies stopped in their tracks so to speak. Irish

[MAT51]

Thanks Irish. Yes my vascular doctor and my rheum (they work together running the CTD clinic where I've somehow ended up - to my great benefit!) said the same. Anita said earlier how she felt immediate benefit from Cellcept until it made her too ill to continue. I was same with Imuran but not with Methotrexate, Sulfasalazine or Plaquenil. With Cellcept the main discernible improvements have been that i stopped needing a cane for my balance and am no longer waking with screaming pain in the knuckles of my right hand. My facial issues continue to plague me as do my digestive issues, dryness and the icy cold, dead looking feet and legs are also terrible. And this confuses me because surely this should throw my balance off so I feel pinch drunk again? But somehow I don't - although my gait is becoming increasingly bad again.

What my doctors say is that much of what I describe is either unrelated to a systemic process (i.e arthritis, chronic pain/ Myofascial pain etc) or is due to pre- existing damage to my small nerve fibres. I do trust them for the most part (I've lost some confidence in doctors over the years) but I do feel that the irreparable damage they refer to could have been avoided if I'd been treated for the SFN much sooner with IViG. This they will not contemplate - but I do!