Author Topic: Clinical Trial  (Read 9991 times)

P.Trish

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Re: Clinical Trial
« Reply #45 on: April 19, 2013, 09:26:56 PM »
Anabanana, I just had my Rheumy appt today - my focus score from the lip biopsy is .9

I am sorry it that it took so long to reply! Truthfully, I kept forgetting between flares & other fun health issues. My rheumy asked if I wanted  another lip biopsy, since it has been well over a year. He subtly discouraged me, which was surprising because he is usually supportive of clinical trials. My current condition is 'status quo', meaning not any worse than 8 wks ago.  For the fatigue, my insurance just approved nuvigil after 3 rejections. Now that I have it, I'm nervous about trying it.

I hope you are having a good weekend. I haven't given up on clinical trials or anything else that will help us all feel better; I am just 'brain-fogged' after the 5 hr trip (both ways) to see the Rheumy.
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female dx'd Jan 2012, English/Drama Teacher: retired, plaquenil 400mg, aspirin 80 mg, Lisinipril 20mg,  fish oil, multi vitamins, methyl pred  pack (every 2 months) evoxac, d-mannose, biotin, gluten free
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Suslew

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Re: Clinical Trial
« Reply #46 on: May 20, 2013, 05:53:58 PM »
Back from Stanford today.  I will go in for pre screening on June 11th.  It looks like I qualify with my past SS-A and lip biopsy, but there are some exclusions that can come up with the bloodwork tests. I've reviewed the exclusions, and I don't see any surprises.

So clinical trial of baminercept for 6 months which may be drug or placebo.  drug therapy will not be continued after trial; so if it works wonders I'll be sad and cold turkey

 Or

start on cellcept in July as previously planned

??????

anabanana

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Re: Clinical Trial
« Reply #47 on: May 21, 2013, 08:58:48 AM »
Anabanana, I just had my Rheumy appt today - my focus score from the lip biopsy is .9

I am sorry it that it took so long to reply! Truthfully, I kept forgetting between flares & other fun health issues. My rheumy asked if I wanted  another lip biopsy, since it has been well over a year. He subtly discouraged me, which was surprising because he is usually supportive of clinical trials. My current condition is 'status quo', meaning not any worse than 8 wks ago.  For the fatigue, my insurance just approved nuvigil after 3 rejections. Now that I have it, I'm nervous about trying it.

I hope you are having a good weekend. I haven't given up on clinical trials or anything else that will help us all feel better; I am just 'brain-fogged' after the 5 hr trip (both ways) to see the Rheumy.
.

Oh, I understand. I am glad that you posted it. My focus score was about half of yours, but lymphocytic infiltrates, very specific to sjogrens...somewhere I read here...that in light of the lymphocytic infiltrates existing (not necessarily about diagnosing sjogrens), you either have the inflammatory cells specific to sjogrens, or you dont...even if you dont meet the 1 focus, we still have the process happening, but at the time of biopsy, thats what it showed...milder than 1 focus....that could have easily changed 1 month later, 3 months, 6 months, a year...it doesn't reflect the dryness at all.

Many doctors may want to dismiss this as soft finding, but come on, if you have a precancerous state (cells) for example, you have early cancer...just like if you have inflammatory cells, you have sjogrens (or if there are any other autoimmune diseases that could cause this?).

I met a person on another board who had a muscle biopsy and came back with mild myopathy/myositis, and still some doctors tried to say these might be soft findings...the person fired back at them...the muscle weakness presentation with the muscle biopsy findings should have been enough..these medical people, don't they understand that disease takes time to show the worst case scenario on a biopsy...by the time its very bad, it may be too late to help someone, but in the early stages when the damage on paper is mild, that is the time to take it seriously...its like they don't understand that a disease will be negative or mild(on paper) before it becomes severe, well, thats why and where  medicine is failing...treat before it becomes worse...


Focal lymphocytic sialadenitis less than 1 focus, Dry everything, Neuro symptoms, Muscle weakness, Fasciclations, High inflammatory CRP,Tremor,Balance issues,Dizziness.
Take vit-D3, fish omegas, calcium, magnesium w/B6, B12, Restasis, Systane Drops, Seronegative