I have not posted on Neurotalk for some time and had, at least for a time, improved. I still see some friendly and familiar faces here.

I have had what is believed to be CIDP (and Sjogren's) for quite some time (1992, I believe), though things had improved to some degree until 2012, when I had to get a pacemaker. This did not set well with my body and autoimmune problems and I have been unable to reduce my Prednisone back down to where I was when I was nearly off of it. My Cardiologist thinks that the heart issue (AV block, Mobitz Type II) relates to the autoimmune disorder.

Most recently,an Osteoporosis drug did a number on my pain level. This was followed by an injection of Depo Medrol, which my body also did not like. Picky, picky, picky... The result is I am finally going to consult a pain management anesthesiologist this week.

The Rheumatologist I see seems to be very bright, and I am happy to have someone who actually wants to help. He said that they are finding that about 20% of the patients diagnosed with Sjogren's, do not have this, but have small fiber neuropathy, which presents in a similar fashion. I think the gold standard for diagnosis is still the lip biopsy, something I would like to avoid.

It looks like the next step will be IV Gamma Globulins now. Wow! Have they increased in price!!! I could almost buy a new car for the cost of one dose...

Anyway, that's my story and I will try to be better about keeping up with
posting...

I was wondering if Silverlady was still on the boards. Anyone know?

Yorkiemom
Cathie

Her last post seems to have been in 2011.

Doc

Hey Cathie....you sure have been through it haven't you ? I don't know anything about Sjogren's but I do have small fiber neuropathy.......it was confirmed with a skin biopsy done on my ankle.

The biopsy for confirming Sjogren's is on the lip right ?

Anywho....just wanted to tell you I'm so sorry for all that you are going through. Especially when things had improved for you.

Please keep us posted on how you're doing

Debi from Georgia

Hi Cathie,
I'm so sorry your pain has increased again.

I had a lip biopsy a few years ago. My rheum would like to do another. I told him I want to think about it. My lip really hurt afterward. Plus, I am not sure the treatment would change.

I do get IVIG. I'm lucky my insurance pays for it. I agree the price is outrageous!

I did have my eyes tested and did have really dry eyes. But I do believe the lip biopsy really qualifies for the dx. My rheumo said that the bloodwork may not show anything for years.

I don't know what I believe. All I know for sure is I have SFN. I had the biopsy.

If you do decide to get the IVIG, I do believe I get some pain relief from it.

Hope you feel better soon!

My goodness, you really have been through a lot Yorkiemom. I too would try to avoid the lip biopsy.

I have Sojgrens Syndrome, diagnosed through blood markers, dry mouth and dry eyes. Do you have dry eyes and mouth?

Could you periodically repeat the bloodwork? If you have SS, would it eventually show up?

Would you mind saying what osteoporosis medication caused you trouble? My rheumatologist wanted to put me on Forteo, even though my bone density was actually pretty good. Long story...but I said "no," for a variety of reasons. Perhaps in the future, but I really really really need to think about it.

Recently, I developed neuropathy in one foot. What was very upsetting to me is that my rheumatologist acted like this was weird and unexpected. The neurologist I go to ordered a nerve conduction test and it was fine. The tester said that I should have a small fiber neuropathy test, but the neuro said that I didn't need it at this time and if the neuropathy worsened and I wanted the test than maybe I should have it. apparently it involves a couple of tiny incisions on your leg.(this neuro is very kind and perhaps he didn't want me to suffer with any more pain at this time).

The Sojgrens society literature talks about neuropathy being rather common for us and also talks about the lack of information/education among medical professionals about SS. Honestly, this has been my experience.

How long will you have to do IVIG? When do you start? Wishing you well.

He told me each treatment is 30K. Does that sound right? I have good insurance, but remember when I had them before, they were about $700 if given in a freestanding infusion center and $2200 if given in the outpatient area of the hospital. That has been quite a while back. I am showing my age here.

I don't know when it will start, he didn't say, but I do know the hospital is working through getting the insurance approval.

The osteoporosis drug I took was Atelvia. The doctor says the next step is Prolia, an injectable drug given twice yearly. I have not read much on that. My friend here had a very similar reaction when she took one of the other bisphosphonates. I am now a little gunshy of these drugs, though I was told Prolia works in a different manner...

Cathie

I do have dry mouth, dry eyes, etc and the blood markers for Sjogren's: SSB antibodies as well as RNP. I also had a positive ANA some time ago.

The doc's response to that was that a lot of people have these markers... Don't know if that is right or not...

Sometimes I wish I could just have a little country doctor who would just keep things simple...

Onto the pain clinic... The doctor there wanted me to go through a multi-specialty clinic, including psych and a bunch of other disciplines. I said thank you very much, but no thank you. I said I could function a lot better if I could just get pain under better control. She wants me to try baby doses of Lyrica, like 25mg... Okie dokey. I am willing to give that a shot.

My dance card is filled up with doctors' appointments once again...

Trying to look on the light side,
Cathie

If you have positive SSB makers, positive ANA & RNP...and symptoms, I don't see the need for a lip biopsy. Your diagnosis should be made on the factors/labs above. Sure, the lip biopsy is the gold standard, but I'd consider it overkill at this point and an unnecessary procedure.

Sure, there may be some with the SSB marker without current/active Sjogren's, but they have a good chance of developing symptoms later on. But since you have symptoms NOW, you should be given the proper diagnosis of Sjogren's without the biopsy.

I have always had negative markers (for everything), but my lip biopsy was very positive and I had all the symptoms. I also have SFN and confirmed damage to the dorsal root ganglia via a new MRI at Johns Hopkins (and suspected autonomic ganglia based upon other findings/diagnosis).

The reason they believe my labs are negative is due to the fact that my immune system (in general) is also deficient. I receive IVIG now, but at a dose for immune deficiency,not SFN. I also got IVIG for 9 years starting back in '97, but it didn't help the neuropathy. It was just as expensive then, as it is now. My infusions run about $10,000 a month. Back in the 90's, it was about $8000 (because it did it at home and it is always less with just a home nurse vs infusion center with doctor and others on staff).

Your infusions will be more expensive because your dose (for SFN ) is higher.

Vowel Lady,

Just wanted to make a quick comment on the skin biopsy test for SFN....it's nothing compared to the nerve conduction test ! The skin biopsy just consists of them deadening a small spot and taking 3mm skin punches....they covered it with a bandaid and off I went. I remember it being a little sore but nothing else. The nerve conduction was uncomfortable for me but I'd do a skin biopsy anyday

Debi from Georgia

I don't know whether my Rheumatologist is correct in saying 20% of the people diagnosed with Sjogren's actually have inflammatory polyneuropathy or not. He seems to be a very knowledgeable doctor and is also on the faculty at our medical school here.

I have the markers, the dry everything symptoms etc. I just don't have a lip biopsy and think I could do without that. My blood work is repeated constantly, and the markers have been present for years. He is very insistent that my problems are neurological, but says that inflammation is present.

I did see a very kind pain management doctor who had me try 25mg of Lyrica, which did nothing. I am now giving Neurontin a try. THe combination of that along with Flexeril seems to help quite a bit...

Maybe I misunderstood the charge for the IV's. That sounds high compared to the above comment.
Cathie