Author Topic: 5 Year Plan  (Read 783 times)

markt

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Re: 5 Year Plan
« Reply #15 on: May 18, 2018, 11:01:17 AM »
Companies are not required to report on the results of completed or abandoned studies on clinicaltrials.gov, and many don't. Honestly, one of the best places to get news on clinical trials is pharmaceutical investment news, as investors have a very keen interest in the results of the trials.
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Thank you, I did find some nuggets in the Annual Pipeline Reports for Novartis.  It appears their planned filing dates for investigation medications indicated for Sjogrens are 2021 (VAY736) and 2022 (CFZ533).  Hopefully they get the FDA fast-track status (as there is no real existing standard of care as far as systemic therapy) and find some incentive to move their schedules to the left.  Here's to hoping anyway.

https://www.novartis.com/sites/www.novartis.com/files/novartis-pipeline-2017-annual-report.pdf

https://www.fda.gov/ForPatients/Approvals/Fast/default.htm

« Last Edit: May 18, 2018, 11:27:48 AM by markt »

susanep

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Re: 5 Year Plan
« Reply #16 on: May 20, 2018, 12:54:44 AM »
I am worker harder on my health by continuing on this Dash Diet that controls high blood pressure, and involves eating lots of whole foods, and I have lost 30 pounds so far.

I am working on what exercise I can do, and trying to include more as I can. I want to stay mobile.
I have cut out sweets, and eat only poultry and fish as meats, and only a certain amount.

I am doing all I can to control stress.

Me and my husband are planning to play some board games out on a picnic table in the evenings when the sun is to the back of us, and in shade. We have both been doing range of motion exercises.

We both hope to be doing better in some ways with our health over the next 5 years.
I just finished taking out a life insurance on myself so it won't be a concern for my husband or son.

I have started taking a statin drug to help along with the healthy whole food to prevent heart disease or a heart attack as long as I can.

I just want to love everyone, and I always include all of you on here in my prayers.
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

Carolina

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Re: 5 Year Plan
« Reply #17 on: May 20, 2018, 02:05:56 PM »
Dearest Susan,

Your post is so inspiring and loving, thanks!

Regards, Elaine (aka Carolina)
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

SjoGirl

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Re: 5 Year Plan
« Reply #18 on: May 20, 2018, 02:18:57 PM »
My plan:

1. Continue on existing meds as long as I can without and increase in dose or move to a stronger med.

2. Get fit -- I was so sick for so long and every time I try to exercise I take a step back. I want to be fit, which means good muscle tone and strength, ability to walk for long time and a bit faster (but not winning any races), able to sing five stanzas of a hymn without being out of breath by verse three.

3. Avoid further joint damage. I have SjS and/or seronegative RA. My hands and feet were starting to bend up quite a bit and were quite painful, but meds are staving off further issues, at least for now.

4. Still have my own teeth, all of them. So far so good and I work hard to maintain them.

5. Retire in two years even though I won't be 65. One one level I'd like to work longer, but of my nuclear family four of seven of us died before age 70, I would like to make it to that age and beyond and think that retiring will enable me to do so.

6. Say that I've seen the world, or at least the parts of it that I want to see.

7. Be a great partner to my incredibly supportive and loving husband and a caring family member and friend. I know relationships enhance health and I just plain want to be better at them.

This is may not quite what you were looking for, but it's my list.

SjoGirl
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

markt

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Re: 5 Year Plan
« Reply #19 on: May 21, 2018, 03:55:23 AM »
Sjogirl,

I think you are quite on target, that is an admirable list of things to keep you going.  Alot of us neglect to include the family and social aspects of getting well.  As a matter of fact, the best thing I have on my longterm treatment plan is watching my 6 month old and 2 year old girls...  they keep me focused on being as well as I can, in the right now. 

warmwaters

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Re: 5 Year Plan
« Reply #20 on: May 23, 2018, 07:41:55 PM »
Well, this makes me sad, as I have no particular 5 year plan.

I'm about 10 years since diagnosis, and have tried a wide range of treatments. Many were unsuccessful, and my last rheumatologist, who was very knowledgeable about clinical trials felt that my best bet beyond what I was already doing was hope that one of these trials would produce something that might be effective for me. I recently moved, and have a new rheumy, whose very good. She offered to repeat a number of options that I've tried before. I've tried a couple, but have had problems with side effects.


In the interim, I'm tweaking small things

Trying to move to a low carb diet, which is somewhat difficult because there are many vegetables I can't eat.

Trying some simple low impact exercises

But most of what my plans are right now is having the best life I can now.

- Travel while I still can
- Get tools that let me do more, for example I recently got a mobility scooter
- Find things that keep me engaged in things of interest, and connected with others

So acceptance is a big part of my plan.
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