Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: markt on May 14, 2018, 05:08:21 AM

Title: 5 Year Plan
Post by: markt on May 14, 2018, 05:08:21 AM
I was sort of interested in the following question, that is what do other folks consider to be their 5-Year Plan?  That is, what are your goals for getting better and managing Sjogrens?

This includes systemic treatments, DMARDs, dietary stuff, exercise, clinical trial participation, etc.

We always look to "better days" and most have a plan of things to try.... I am just curious what that looks like for others. 

Title: Re: 5 Year Plan
Post by: Carolina on May 14, 2018, 06:30:43 AM
What an interesting topic markt,

I have a list of things I want to explore to make my life better, but I'm not sure I'm spreading the exploration out over 5 years.

I have no plan to add a DMARD to my treatments.

I follow a specific set of dietary restrictions because I have both irritable bowel syndrome (IBS) and small intestinal bacterial overgrowth (SIBO).  If my symptoms get worse, I will ask for another round of antibiotics.  I have lost 20 pounds in the past year, I would like to lose 20 more, but my mobility is so compromised it is difficult to lose weight.

I exercise in the pool and using the NU STEP in the fitness center.  I had PT for strengthening my back recently with moderate results.

I am not eligible for any clinical trials, although my Immunologist includes me in the patient cohort for her research on CVID, the Primary Immune Deficiency which is the underlying condition causing almost all of my problems.

I have a pain specialist at Duke, who has prescribed Low Dose Naltrexone for my pain.  A higher dose of Naltrexone may be right for me now that I have been taking my current dose for 5 months.  I will discuss this with the pain specialist in the next month or so.

I plan to get on the waiting list for two Continuing Care Retirement Communities in our area, and should have done this years ago, but my husband refuses to consider this option.  Now I will put only my name on the lists if he refuses to add his name.  I keep procrastinating, and that is really not good, because I think I will need assisted living in 5 years, honestly.

Currently I am planning to find orthopedists to deal with my joint problems.

1.  I met with an orthopedic surgeon to discuss surgery on my neck.  Our next step would be to have an MRI of my cervical spine.  It is up to me to ask for this MRI, based on my experience with pain that is radiating to my arms.   I'm going to ask for this MRI in the next six months.  If surgery is indicated by the MRI, I will probably have the surgery. 

2.  I have the name of the orthopedist I want to see to discuss knee replacement surgery.  I will make an appointment in the next six months.  This Duke orthopedist is the most highly recommended in the area.  If I have neck surgery (see above) I will delay knee replacement surgery.  If I don't have neck surgery, the knee replacement surgery would be my next consideration, if the orthopedist recommends it.

3.  I have the name of the orthopedist I want to see to discuss shoulder replacement surgery.  I will make an appointment in the next year, depending on whether or not I have neck surgery, and what the orthopedist says about my knees. And the priorities on these surgeries may change once I get more information.

I guess, markt, our Five Year Plans depend a great deal on our age, don't they?

Regards, Elaine

 


Title: Re: 5 Year Plan
Post by: markt on May 14, 2018, 08:30:09 AM
Hi Elaine,

Having things to try always is a good thing, and there is some hope that can be found in that for sure. 

I neglected to list my own thoughts on this.

1. Continue Rituximab infusions; it has alleviated some of my more impairing symptoms, Blepharitis reduced and my saliva quantity/quality is largely restored. 

2. Broke down and ordered Scleral Lenses... this should alleviate my worst symptom (Aqueous Tear Deficiency).  I plan to alternate their wear with Bandage Lenses at night time for sleep.

3. Experimenting with dropping Plaquenil (Rheum wanted me to do it along with Rituximab, but it did nothing to alleviate my Sicca Syndrome.                                                                           
(I view it as an expendable prophylactic that I can drop from my pharmacy bill.)

4. Cut out simple carbs and sugar from my diet.  I am hoping this eases the recurring thrush that I tend to get.  I am currently using Clotrimazole tablets to keep it down, which seems to work.

5. Gest tested for allergies (Environmental/Food) and Vitamin deficiencies.  I recently found out I was Vitamin D deficient (seems to be common for Sjogrens) and was suggested to start a daily 3000 Unit dose.

6. Researching Interferon A Lozenges, people have been prescribed these... research articles seem largely positive.

7. Pursue Expanded Access claims for Trial medications (I am excluded, being Sero-Negative, with positive lip biopsy).  Particularly for CFZ533, which has it's Phase-IIb trial concluding at the end of this month.  (With any luck it proves out, and offers therapeutic value).  Who knows, maybe we'll see commercials for this on TV just like with Humira and Enbril in the very near future.

8. Exercise.  This should be higher on the list, as it's something I can readily do... but often do not.  I am inconvenienced and impaired by this disease, but definitely not disabled... so I have no excuse to avoid it so.  This is a big part of overall health.

9.  Flouride Trays.  I need to start working to preserve my dental health a little harder.  I have never had a cavity, and my teeth are au natural.  I am hoping I can stay that way until a better medical intervention for Sjogrens comes available.

Just some thoughts on different things I am thinking of doing or considering trying to make Sjogrens less of a factor in my life.... 

Title: Re: 5 Year Plan
Post by: Sharon on May 14, 2018, 10:39:32 AM
This is a good idea markt.
Helps keep thing in order.

BTW- Can you explain how Interferon A Lozenges can help?

So, I don't know about a 5 year plan...hoping a new med for SS is released by then.
However, in the shorter term:

1- Treat my posterior blepharitis that nothing has helped with.
2- Continue treatment with Orencia.
3- Find a good supplement to help with my remaining joint pain.
4- Continue the baking soda powder treatment for AI to see if it helps.
5- Get tested for various bacteria found implicated in AIs (as recent studies show).
6- Try treatments focusing on repairing the gut barrier (as recent studies have indicated this in AIs).
If anyone can suggest such a treatment please let me know!
Title: Re: 5 Year Plan
Post by: markt on May 14, 2018, 01:00:52 PM
BTW- Can you explain how Interferon A Lozenges can help?

https://www.ncbi.nlm.nih.gov/pubmed/12539025

https://www.ncbi.nlm.nih.gov/pubmed/12539025

I am not sure why, but most contemporary Rheumatologists never really discuss this (as well as a lot of other helpful things discussed here) as an option and stick to the traditional 3 meds (Plaquenil , Pilocarpine/Cevemiline, and Restasis). 
Title: Re: 5 Year Plan
Post by: Sharon on May 14, 2018, 01:18:55 PM
Thank you markt,
That's a very interesting find!
I think rheumatologists just stick to the most researched meds.
The study on the lozenges was a pilot study with only 8 patients receiving the med.
How/where can the lozenges be purchased?
Title: Re: 5 Year Plan
Post by: lorigacc on May 15, 2018, 06:45:18 AM
Hoping to find new doctors (but running out of steam on that issue)...and god willing..be able to retire and start taking better care of myself.
Title: Re: 5 Year Plan
Post by: markt on May 15, 2018, 12:34:24 PM
As a way of "preserving what I've got", I guess I should consider doing Pro-Kera treatments (maybe annually) on each of my eyes as part of my plan to promote healing of the ocular surface and cornea.  This is at least until another treatment offering long-term moderation of the disease comes along. 

I have already done one treatment on my right eye.  This was following removal of a salzman nodule near my cornea.  It runs about $485 per eye, be sure to shop around.

http://www.biotissue.com/patients/our-products/patients-prokera.aspx

Title: Re: 5 Year Plan
Post by: Sharon on May 15, 2018, 04:53:11 PM
Do you insert the pro-kera like contact lenses?
Have you looked into IPL treatment to promote tears?
Title: Re: 5 Year Plan
Post by: WhatYouSjo on May 15, 2018, 09:28:57 PM
Looking at the clinical trial pipeline, there is a strong chance that Orencia (abatacept) will be approved for SS patients in the next couple of years. If my symptoms worsened, I would certainly consider it, but I would have to balance the increased risk of infection and other side effects.

There are quite a few treatments which are currently wrapping up or have completed phase 2 trials (Tocilizumab, CFZ533, Belimumab, Rituximab, AMG 557, etc.) and may be available some time in the next 5 years. Most are biologics, but some are not. Depending on the safety profile, I would consider some of these as well were they to have successful phase 3 trials. I still hope that stem cell therapy, particularly MSCs, becomes available, though current research for SS is limited.

I'm already doing a variety of lifestyle and alternative therapies (see my signature) and plan to continue those. I'm willing to try new alternative remedies if there is some data to back them. I have been eying a few therapies like vagus nerve stimulation, which may have more treatment options over the next 5 years.

I would like to be able to stop taking hydroxychloroquine in the next 5 years, as the risk of retinal toxicity increases more rapidly as time passes and cumulative doses increase. For now I've lowered my dose to 200 mg/day to slow down the increase of cumulative doses.
Title: Re: 5 Year Plan
Post by: Sharon on May 16, 2018, 03:43:33 PM
WhatYouSjo-  Why would it take Orencia a couple of more years to be approved when their 3rd Stage results should be out in the next few months?
BTW, I'm now on it and I credit you with recommending it. THANK YOU!  :D
It has helped a lot and I haven't had issues with infections from it.
Title: Re: 5 Year Plan
Post by: markt on May 17, 2018, 04:15:51 AM
Do you insert the pro-kera like contact lenses?
Have you looked into IPL treatment to promote tears?

Hi Sharon,  the pro-kera goes in much like a contact.  The OD or MD will likely place it themselves... as it is a good bit largely and slightly ungainly to insert.  I wont lie, it is uncomfortable at

first... but you can deal with it.  It gets more comfortable over the next several days as it sorts of "melts" onto the eye and the nutrients within bond and dissolve onto the ocular surface. 

My eye looked great post treatment... very unlike it's blood-shot and irritated appearance beforehand.

I really do not know much about IPL to be honest... I figured it was for treatment of Blepharitis to improve lipid flow rather than doing something to increase aqueous tear production.  I will have

search that out! 
Title: Re: 5 Year Plan
Post by: markt on May 17, 2018, 04:20:11 AM
There are quite a few treatments which are currently wrapping up or have completed phase 2 trials (Tocilizumab, CFZ533, Belimumab, Rituximab, AMG 557, etc.) and may be available some time in the next 5 years. Most are biologics, but some are not. Depending on the safety profile, I would consider some of these as well were they to have successful phase 3 trials. I still hope that stem cell therapy, particularly MSCs, becomes available, though current research for SS is limited.

Hi, I was sort of curious... is there a webpage that reports the results for these trials?  I tried going to Novartis, Genentech - Roche, Eli Lilly, etc. just to see what is there... not a lot to look at.

I think a lot of others here would be curious to keep up with the latest developments, it's been at least several years for some of these since they initiated their current phases... so I suppose

their is some meaningful data to consider now.
Title: Re: 5 Year Plan
Post by: WhatYouSjo on May 17, 2018, 07:16:28 AM
WhatYouSjo-  Why would it take Orencia a couple of more years to be approved when their 3rd Stage results should be out in the next few months?
BTW, I'm now on it and I credit you with recommending it. THANK YOU!  :D
It has helped a lot and I haven't had issues with infections from it.

I'm glad to hear that it's working well for you, and hopefully it will be available to many more patients soon.

As far as the trial goes, the estimated date of study completion on clinicaltrials.gov (https://clinicaltrials.gov/ct2/show/NCT02915159) is July 2019. The estimated primary completion date is August of 2018, but it can take longer to gather data for secondary outcomes and adverse effects. Usually results are released somewhere between those two timeframes. Once (hopefully successful) results are released, there is still an FDA approval process, then the company will need to invest in production and marketing. In this case, Orencia is already in production, so the main delay is waiting for insurance companies and government health systems to update their policies to cover the new drug. Bristol Myers is an experienced pharmaseutical company, so I would hope they could move quickly, but they do have data from 72 worldwide locations to process. If I had to guess, I would say early 2019, but I added some padding because one can never be sure.

Hi, I was sort of curious... is there a webpage that reports the results for these trials?  I tried going to Novartis, Genentech - Roche, Eli Lilly, etc. just to see what is there... not a lot to look at.

The most authoritative source of clinical trial status is clinicaltrials.gov (https://clinicaltrials.gov/). Their website used to be a nightmare to navigate, but it's gotten a little better after a recent redesign. I also maintain a tabular list on my personal website that I find easier to use, though I need to update the data.

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.
Title: Re: 5 Year Plan
Post by: cccourt1942 on May 17, 2018, 10:19:53 AM
Gosh....great thread. I thought Orencia was being dispensed...then realized: It IS>...but for Rheumatoid Arthritis and Psoriatic Arthritis.  It is QUITE difficult to get an insurance company to approve it. I have a close friend who is 53--and her rheumy has sent in 3 requests over nearly 2 year period to have her ins company approve it.  We have the same rheumy who is quite cooperative w' her patients, as well as pro patient/drugs.  I have waited over a year before I accepted using methotrexate injections for my psoriatic arthritis and SjS.  I have zero idea why I waited so long. It is absolutely a miracle drug: for ME.  The friend whom I reference above used it about 2 years ago and had the skin reaction to it.  THAT is when our shared rheumy went for Orencia for her.  She is using CBD oil daily now and has had favorable results in several areas.  With SjS, we do what a) works for us, and b) what is available.  Texas is beginning to talk marijuana.  Don't think it will happen for me.  It will happen for my friend though. 

ccc
Title: Re: 5 Year Plan
Post by: markt 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.
[/quote]

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

Title: Re: 5 Year Plan
Post by: susanep 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
Title: Re: 5 Year Plan
Post by: Carolina on May 20, 2018, 02:05:56 PM
Dearest Susan,

Your post is so inspiring and loving, thanks!

Regards, Elaine (aka Carolina)
Title: Re: 5 Year Plan
Post by: SjoGirl 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
Title: Re: 5 Year Plan
Post by: markt 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. 
Title: Re: 5 Year Plan
Post by: warmwaters 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.