Quote:
Originally Posted by cat1234
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...
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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.
