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Clinical Trial

Started by P.Trish, February 22, 2013, 07:27:30 PM

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Sleepy In Seattle

#15
March 05, 2013, 07:55:16 AM
I've heard that "Placebo" stuff is great for almost anything that ails you...but I can't seem to get my doc to prescribe it!  ;)  :P  ;D
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

P.Trish

#16
March 05, 2013, 08:39:15 AM
Ha! Sleepy, I am thinking that if I get the 'placebo drug', I'll feel better because this whole disease fiasco must surely be in my head (not)  :P
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
. Stroke survivor  'Have a heart that never hardens and a touch that never hurts" (Dickens)

susanep

#17
March 05, 2013, 11:14:44 AM
Good luck girl.

susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

LonghairWolfe

#18
March 05, 2013, 04:03:59 PM
Hope you get the drug and qualify too.  Finger's crossed!

P.Trish

#19
March 06, 2013, 11:05:56 AM
*#@" this cold virus! Yesterday,  I had a fever - started a 'Z" pack - still planning to go for the clinical trial consult - on Friday - wish me luck - bought some elderberry syrup, which I took last night - really helped me sleep, despite the runny nose
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
. Stroke survivor  'Have a heart that never hardens and a touch that never hurts" (Dickens)

CMNK12

#20
March 07, 2013, 05:09:50 AM
Stay in bed and rest. Give your body time to fight off the virus. Good luck on Friday. Hoping all goes well for you. CK

warmwaters

#21
March 07, 2013, 08:21:58 AM
I'm about to ask my rheumy if she thinks this clinical trial is worth a try. I'm located near Stanford, which is another of the research sites.

Of course the down side is that you may be in the placebo group, in which case you are not getting treatment.   

Best of luck!
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

P.Trish

#22
March 07, 2013, 11:11:45 AM
Yep, I understand about the placebo, but I have a lot of questions for the drs., this Friday.  One of them is "Will I be taking the same drugs  - that I am currently on -  during the trial?" ex: plaquenil. Please let me know what your rheumy says.  Also, I would really appreciate any questions that you, and others on this site, think I should ask.  One of the drs is Daniel Wallace - he should know somethin' :). Thank you for the good luck wish!
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
. Stroke survivor  'Have a heart that never hardens and a touch that never hurts" (Dickens)

anabanana

#23
March 07, 2013, 12:37:06 PM
Quote from: P.Trish on March 04, 2013, 06:39:20 PM
I did have a lip biopsy, with no complications (about 1 yr ago) It was borderline, but along with my other symptons, the dr dx'd sjogrens. If I fit the other criteria and move forward, I know I will have another biopsy - somewhere down the line. I completely agree with you about being absolutely weary of living with these symptons and the fighter in me really wants do something for all of us. Thanks  for the words of encouragement. Cross your fingers about Friday.

Good luck and keep us informed!
I wanted to ask you about your borderline lip biopsy, if you don't mind, what were your borderline results?
Cheers,
Ana
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

Suslew

#24
March 07, 2013, 10:00:47 PM
Good luck and keep us posted.  The clinical trial at UCSF hasn't begun enrolling yet, but I'm on the contact list when it does. 

CMNK12

#25
March 09, 2013, 07:07:15 AM
Anxiously awaiting to hear about your experience. I really hope it went well. CK

P.Trish

#26
March 09, 2013, 12:27:01 PM
Hello everybody - thanks you again for your support, advice and good wishes - here is the update on my Friday, Mar 8  appt. at Cedars Sinai.
The drug company - running the clinical trial - has excluded me for now, because my lip biopsy - taken about a yr ago, was inconclusive. Their criteria is very strict; one has to be positively dx'd with Primary Sjogrens to participate & they definitely want a positive result on the biopsy.  Ana,  I think my dr said my lip biopsy was 3.4.  Another concern is my  IGg level, which is 1760 from Sept (high normal). Dr took another test yesterday. In the pursuit of the clinical trial, my dr is suggesting that I get another lip biopsy, since it has been a year.  He thinks the clinical co. might cover the cost. So, I truly wish I had some helpful news for ya'll. I did learn that the infusions are once a month, which is do-able for me.  The doctors said that it is extremely hard to find recruits for this trial.  warmwaters and suslew - please let us know about what you find - meanwhile, I (and my doctor) haven't given up - it's just not happening tomorrow - and I'm not getting any younger people! Have a good weekend everbody. My pred pack has helped me feel better - and company is coming.
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
. Stroke survivor  'Have a heart that never hardens and a touch that never hurts" (Dickens)

Scottietottie

#27
March 09, 2013, 12:49:49 PM
Hi Trish  :)

I also failed to get on a trial because results were not conclusive enough. I think they have settled on me having lupus with sicca symptoms.

I;m sure you're disappoined because you will have got geared up to participating.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

P.Trish

#28
March 09, 2013, 01:30:30 PM
Scottie - you read me well; I am disappointed, but as you know we just keep on tryin' & staying as productive as possible. I wonder if I wil ever adjust to these ups and downs (physically and mentally:P). Have a good weekend.
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
. Stroke survivor  'Have a heart that never hardens and a touch that never hurts" (Dickens)

LonghairWolfe

#29
March 09, 2013, 02:54:33 PM
P. Trish,

So sorry but I know how you feel.  Keep your head up!  At least you tried :)
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