Author Topic: 5 Year Plan  (Read 782 times)

markt

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5 Year Plan
« 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. 

« Last Edit: May 14, 2018, 06:49:42 AM by markt »

Carolina

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Re: 5 Year Plan
« Reply #1 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

 


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

markt

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Re: 5 Year Plan
« Reply #2 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.... 

« Last Edit: May 14, 2018, 08:33:06 AM by markt »

Sharon

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Re: 5 Year Plan
« Reply #3 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!
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

markt

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Re: 5 Year Plan
« Reply #4 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). 

Sharon

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Re: 5 Year Plan
« Reply #5 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?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

lorigacc

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Re: 5 Year Plan
« Reply #6 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.
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Kyphosis, Hiatal hernia
   Plaquenil, Forteo injections, Restasis, Prinivil, Ecotrin, Calcium, Vitamin D, Probiotic, Fish Oil

markt

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Re: 5 Year Plan
« Reply #7 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


Sharon

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Re: 5 Year Plan
« Reply #8 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?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

WhatYouSjo

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Re: 5 Year Plan
« Reply #9 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.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

My website has posts on research and news.

Sharon

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Re: 5 Year Plan
« Reply #10 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.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

markt

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Re: 5 Year Plan
« Reply #11 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! 

markt

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Re: 5 Year Plan
« Reply #12 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.

WhatYouSjo

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Re: 5 Year Plan
« Reply #13 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 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. 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.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

My website has posts on research and news.

cccourt1942

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Re: 5 Year Plan
« Reply #14 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
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene