Hi Enbloc,
My daughter graduated on Thursday so I've been busy with that. But it is a very good busy.

First about the Cymbalta, I'm really glad I came off of it. The withdraw was brutal but I feel much more with it. I requested the rheumy change me to Wellbutrin ( suggested by Mrs. D) and he agreed. I take 300mg per day. I think it is helping with the pain and I have a lot more energy.

I believe that what happened with the IVIG was my neuro tried to get it approved for SFN. That is what I have which was dx'd with a biopsy. He was unable to get it approved. He sent me to my rheumo because he thought I might have Sjogrens. I also was seen at the Sjogrens clinic at Hopkins. They said it was Sjogrens even though nothing came back positive but my eye test. They said that the lip biopsy could have been negative because they didn't get a gland that was positive. They also did another biopsy that they said did not show neuropathy. I did check out the lab my neuro used and it was one many people here have used. They are considered reputable. I do have to say the doctor in in the Sjogrens clinic at Hopkins was very cocky. He sent me for an ultrasound of my thyroid which the radiologist sent the report as Hashimotos. He disagreed with him too. I've had hypothyroid for 20years. I know as a nurse it is neuropathy. I have very symptom. I don't think there is any question in my mind about that. I just wish it could be found what caused it and not leave it at idiopathic. Both doctors believe it doesn't matter. They believe in treating the symptoms. I have to say both are very caring and smart doctors.

I believe my rheumo got it approved under the Sjogrens diagnoses & neuropathy. He still believes it is either Sjogrens or lupus that have not showed positive as of yet.

I now only see my neuro every 3 months. I feel that he thinks he isn't in charge of me anymore because my rheum gives me the Rxs. He did mention doing a muscle biopsy last time I was there. I believe that's looking for MG. What do you think? He said I would have a big scar on my thigh. I thought SFN could cause muscle weakness. Am I wrong?I've researched on the net and have seen many articles that say it can be a symptom.

My rheumo was talking about another lip biopsy last time I was there. I dread that it really hurt for days after.

I do have all the symptoms of SFN. The burning pain, tingling, what I call numbness, movements under by skin. I have lost muscle strength but my neuro said it didn't change from my previous appt. I feel the pin prick test he does but it is really dull all the way to the top of my thighs. It is the same on my arms. As I said I really feel the muscle weakness going up the stairs or if I try to hold my arms up. Such as blowing my hair dry.

The Benadryl was d/c'd at my request. As I said I couldn't drive home and can't afford to have my husband miss so much work since I'm on disability. He has his own business doing home repairs people aren't really happy when you take off mid-day. I love your suggest of Zyrtec. I'm going to call my rheumo on Monday and request he call me back. I'm going to discuss all we have been corresponding about.

As for the steroids with my hives. I think the dermatologist ordered with because I have had the hives for over a week. I also have had bad allergic reactions over the years. One not too long ago that sent me to the ER. I now have to carry a Epi-pen. When she ordered them I figured it may give me some relief from my neuropathy. Do you know if there is any connection out there between neuropathy and hives? They never are able to make a connection to anything that causes all of this.

Thanks again for all your help and information. If there is anything you or others can add I would really appreciate it.

Hopeful

Hi Hopeful,

I too am very glad you came off the Cymbalta. You certainly had a horrible experience doing so though. It's one of those eye openers to realize just how dependent our bodies become to a medication...scary!

I think I remember you being checked for Sjogren's a ways back and that doctors thought you had an autoimmune process going on that was the cause of your SFN...just couldn't confirm. SO MANY with Sjogren's test negative via blood work...up to 40%. But anyway, IVIG is NOT approved by the FDA for use in Sjogren's alone, so I'm sure he must have tagged the SFN on the diagnosis (as he should have) in order to get approval.

I'd be very interested (via pm if you prefer) to hear about your experience at the Hopkins Sjogren's Center. I have seen the neuro/rheumy there for years (since before there was even a Sjogren's Center). Some think he is quite cocky...LOL I think he's great, but again I knew him before he was at the center so we've had a long relationship...and plenty of disagreements...lol Something tells me, it's the same person.

Anyway, back to Sjogren's. It's great that you are being treated even though you tested negative. Like I said, 40% test negative...even some of those with negative biopsy. I have years of negative blood work, but had a positive biopsy. There is NO really good test for Sjogren's. Do you have the dry mouth/eyes, fatigue, joint pain, etc?

I had the muscle biopsy...and yes a large scar. Just don't let them do the sural nerve biopsy. That WILL definitely leave you with permanent numbness from the site of the procedure, all the way down the side of your leg and part of your foot...and again, that is PERMANENT because they sever the nerve to take a large section.

I am NOT aware of muscle weakness with SFN. It is well known with large fiber neuropathy, but as far as I know, SFN causes the burning, tingling, numbness, etc (surface features). Glenntaj would know about this and muscle involvement with SFN...maybe he will pipe in. I have had the very type of muscle weakness you describe (hard to hold arms up to fix hair, or do stairs, etc). Did you have this PRIOR to any steroids or IVIG? Has it gotten worse since you began either treatment? You can get myopathy from high dose steroids...OR just the autoimmune disease itself. Mine would come in flares, so to speak...then resolve after time, until the next wave.

As for a repeat biopsy...I would ask if the IVIG and/or steroids will possibly skew the results. I know the steroids will, because it changes any inflammatory process and the lip biopsy looks for inflammation in the salivary glands. It would easily cause a false negative by masking a inflammation. So that makes me ask...where you taking any steroids when you had the first biopsy?? IVIG can also alter many tests (since it affect the immune system), so you'd need to ask your rheumy about how it would affect the biopsy and/or blood markers for Sjogren's.

I don't know of any connection between hives and neuropathy (SFN)...but that doesn't mean there isn't one. Again, Glenntaj would know. But it does tell me that you have a sensitive immune response, so I would make sure you ALWAYS use some sort of pre-med with your IVIG (Zrytec or steroids or both--but lower dose on the steroids). Have you noticed the hive episodes only AFTER you started receiving IVIG, or did you have hive incidents even before you ever got IVIG? Your immune system is directly tied to your allergic responses, so the IVIG could be playing a role in this.

You say the IVIG helps the muscle weakness. Does the muscle weakness start to reappear just before your next IVIG, then get better right after...or has it been better non-stop since you started the treatment and you assume it's improvement was from the IVIG? If the IVIG is definitely helping the muscle weakness, then yes, the MG should be considered...as IVIG is a treatment for that.

Also, does the IVIG help the burning, tingling, and numbness?

. . .technically speaking, small fiber neuropathy--the dysfunction of thinly myelinated and unmyelinated sensory nerves that subsume the sensations of pain and temperature, and many autonomic functions--cannot result in muscle weakness, as those types of fibers don't ennervate muscles.

That said, though, many report increased fatigue from the condition, not only from autonomic disruption but just from the day to day grind of dealing with symptoms, which is often interpreted as increased weakness. And, of course, there is nothing that says one has to have an isolated small-fiber involvement--while some do have their neuropathy limited to that type of fiber, many have damage to both small and larger fibers; the latter control the sensory impressions of balance in space, vibration and mechanical touch, as well as voluntary muscle control. Generally, those who have noticeable weakness in muscles from a neuropathic process can have that picked up by a well-done EMG (unless the weakness is very recent--that type of damage often takes some weeks or months to make itself manifest on testing).

I'm not sure about hives being caused by small fiber neuropathy, or even large fiber, but there are a lot of conditions associated with small-fiber neuropathies that may produce skin abnormalities that look like hives, from the rash of dermatitis hepatiformis in those with celiac/gluten sensitivity (which can cause neuropathy) to the rash disruption in a number of vascular and connective tissue autoimmune conditions (from lupus to Bechet's to Churg Strauss to polyarteritis nodosa).

Thanks for your information. I'm going to look up the rashes you mentioned to see what they look like.

It's been about a year since my last EMG. It found no large fiber involvement. I definitely have muscle weakness. My legs feel like lead coming up stairs. I'm actually trying some PT now hoping to build up some muscle strength.

I have an upcoming appt. with my neuro. As I said he spoke of possibly a muscle biopsy. I'm not sure I want to go through that .

Thanks again!

I did not realize until now you had a dx of Sjogrens in the past. So have I and also visited the Hopkins Sjogrens Center with a negative lip biopsy. The neurologist there seemed so nice while in the clinic, but then completely ignored my communication attempts after returning home and getting my positive SFN test. Guess we both had a negative experience with him....

Not too long ago I had an itchy rash on my arm. The Johns Hopkins doctors were very interested in it, but did not really explain why. In any matter, I took a combination of Clobetasol (topical steriod cream for contact dermatitis
and Hydroxyzine (oral corticosteroids for contact dermatitis). It resolved itself. I do agree with the earlier comment that it has something to do with a lowered immune response but not a direct relation to the SFN cause. Steriods are scary. The hydroxyzine is very low impact compared to most oral steriods...not sure if it works on hives though.

I had 6 rounds of IVig as well and decided it was not making a significant impact so we discontinued it this past March. The Benadryl did a number on me as well-made me exhausted. It is normal protocol to avoid allergic reactions as each dose you get is a "new" blood product.

Let me know what you decide about the lip biopsy. Would your treatment change with the results? That is what I ask myself every time a new test comes up and I need to decide...

Congrats on your daughter's graduation by the way!

Sounds like we did have the same experience with that doctor. My experience with many doctors through the last 6 years is unless you can further their research they haven't got the time for you. It's really sad I think. My mom was just saying today that years ago when she had an illness the doctors couldn't identify they kept her in the hospital for 3 weeks. I said you would be lucky to get 3hours today before they told you they didn't know what was wrong with you and you need to go see yet another specialist.

After getting all this information, I believe I'm going to request my rheumo give me a much lower dose of steroids with my IVIG. I'm also going to request trying Zyrtec instead of Benadryl. I really need to pay better attention to how much the IVIG is helping. I just said to enbloc I try hard not to focus on my pain level etc but I guess I should.

I will let you know about my decision with the lip biopsy. It is a great question will it change my treatment. I'm definitely asking that.

I forgot you had a Sjogrens diagnosis also. If I knew how I would post the possible diagnosis I have gotten but with all the guess each doctor has made it would take up a whole page. Each doctor seems to have a different possibility.

Amen to that!!!!