Sjogrens World Forums

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Medically assisted death is not a option unless you have a condition or illness that is going to end your life.  You need to be terminally ill.

This topic hit a nerve for me because I have a very close friend whose spouse is in extreme pain (has been for several years) and also many other health issues that affect her quality of life.  She insists she wants to die via euthanasia although she in no way has a terminal illness.  We all see that she is severely depressed.

I think we need to understand that suicidal thoughts are completely different from medically assisted death.

If anyone is feeling this way, please talk to a medical professional and get help.  Help for pain, help for suicidal thoughts..get help.

And yes,  I have had debilitating pain for years.  And I understand how it can wear you down physically and mentally and emotionally.  So like many here,  I know all about this from personal experience.

There.  I'll get off my soapbox.  Sorry everyone.   This is a very personal issue for me for other reasons too.

This is a highly controversial and emotionally charged issue.

Please stay aware that the poll is asking only for a personal opinion and reaction, and only personal reflections will be acceptable for replies.

This is not the place to debate the legal, ethical or moral ramifications, and I thank Carebear for stating her personal thoughts and suggestions (very valuable as they pertain to the seeking of help) within those constraints.

What on earth brought on this question?

Yes, I agree with above posters; it's a controversial, touchy subject. But I can understand why HappyLife wants to investigate this matter seeing as Sjogren's can have far reaching effects on physical and mental health & the fact there is no cure in the foreseeable future...

Consider the patient with SS, that is > 10 years of suffering.
Amongst patients the late stage of SS can lead to the following:

> Feeling sick & very fatigued all the time
> Pain from lumbar region (disc protrusion and arthritis)
> Pain from the gut and pancreatitis, Also stomach ulcers
> Pain from Demyelinating small bowel diseases
> Painful peripheral neuritis and Polymyositis
> Headaches
> Exhaustion  with extreme fatigue
> Pain from Microscopic colitis
> Pain from Trigeminal Neuralgia
> Dry eyes and mouth.
> There is no cure for SS

There are many others.
After many painful years, patients can lose hope. Some may consider suicide.
In this case, a mental health practitioner is needed.

I definitely understand where this question is coming from
and the despair- both physical and emotional- brought on by this illness.
However, it is important to keep in mind that there is much research being done NOW to
find a treatment for SS and its symptoms.
Check out this site to see what's going on and to perhaps even enroll in a clinical trial yourself:
https://clinicaltrials.gov/ct2/results?term=Sjogren&recrs=b&recrs=a&recrs=f&recrs=d&recrs=m&age_v=&gndr=&type=&rslt=&Search=Apply

Results of the Abatacept (Orencia) study (Stage 3) should be available next year very possibly making Abatacept the 1st systemic treatment on-label for Sjogren's!  :)

I have done a lot of research based on pubmed articles. Here are my observations.

1. Only 20% patients have sicca symptoms only. These are the lucky lot.
2. 75% have normal sjogren, 25% have neuro sjogren
3. 90% of normal sjogren are ssa or ssb or ana positive.
4. Only 20% of neuro sjogren are ssa or ssb or ana positive.
5. Neuro sjogren is more aggressive  than normal sjogren
6. 25% of neuro sjogren patients develop trigeminal neuralgia. This pain is the worst pain known to the medical world. It is more painful than limb amputation pain of an accident. 25% of these patients commit suicide. MVD surgery gives hope, but that does not apply to trigeminal neuralgia caused in neuro sjogren.
7. Debilitating diseases of sjogren : joints pain, fatigue, insomnia, peripheral neuropathy are very common.
8. Unbearable suicidal diseases : trigeminal neuralgia, throat neuralgia, multiple sclerosis.
9. Quality of life impacting diseases : dry eyes, dry mouth, dry skin, dry nose, dRTA, Hepatitis, liver cirrhosis.
10. 50% of sjogren patients will develop one or more additional autoimmune diseases.

My take away from all these research is each sjogren patient develops atleast 20 to 40 diseases in their life time. Most of them cannot work. Suffer on a daily basis. Significant medical expenses and hospitalization. Heavy financial and psychological burden on their family.

When i am healthy and happy i surely wanted to live for an eternity. But with sjogren i want live as long as the pain to me and my family is bearable.

Right to live is a fundamental right, so is the right to die in my view.

That being said, i guess we need to have the assisted suicide options *information* available to the needy chronic incurable diseased patients.

I too understand the mental and physical burden...

Having a chronic autoimmune disease is much like being a Prisoner of War... your are home, but not quite home, and waging a battle in your own mind and body to stay ahead of symptoms that are not quite tangible to those around you.  Everything is twice as hard, and you are guaranteed to face it every day.  But there are good days too, and that's what we live for.

That said... I have found help and interventions that have brought normalcy to my life, even on bad days, and I do believe that they can help others.

On the hope front... I look forward to having my "sentence" commuted early with a therapy more tailored for Sjogrens than Rituximab.

https://www.novartis.com/stories/patient-perspectives/targeting-roots-sjogrens-syndrome

Beyond that, I am in a trial right now for Lacriprep, another first in class protein therapy for Sjogrens Dry Eye.... 

Lots of "things" are coming to fruition that mean better days for folks that are going through this challenge.

For me, because of my beliefs, suicide is not an option. During my deepest depression and most intense and lingering pain, the thought does cross my mind. After reading books on "Life After Life", stories of people that have been revived, I know intellectually that it is not the option some believe it to be. Depression can be managed with CBT. Pain can be managed with breathing and meditation. Yes, for a lot of people, medications can help both situations. I have bad reactions to so many of these medications I had to find alternatives. Often where individuals take ownership and participate in the management of their symptoms they have much better results than those that passively expect others to take care of them. Ask for help when you are having problems. Do what you can as you can to help yourself. Always remember to breathe as long as you live. An like Norman Cousins suggests, laugh often and treat disease with a large dose of humor.

When I went through my "heck week" of initial symptom onset (10 days of no food, no sleep, and continued "we cannot do anything" from doctor/ER visits), I was seriously weighing suicide - and that was just the dryness of my mouth/throat/sinuses.

I had gone through some extreme things in the past (Markt might be able to relate to SERE training, as an example), but I never felt as hopeless as I had during this 10 day period.

Getting the proper treatment definitely changed my mind on that - just the 90 minutes of sleep I got that first night made a huge difference in my outlook.

Pete

Markt- Do you know when the CFZ533 may be made available to the general public?
The Phase 2 study was supposed to have been completed August 27, 2018.

Hi Sharon,

Have to be honest, I do not know... something like 3-5 years.  Depends on a lot...

I do see this being a prime scenario for the FDA Expanded Access program here in the States though.  Sadly, few Rheumatology practices have the bandwidth or inclination to put together a package on behalf of their patients and submit to the FDA.

Large Public practices that have a board (with multiple providers), or their own Institutional Review Board (IRB) and even less likely to go this road, as the decision to administer investigational drugs at their practice is a joint decision requiring everyone's buy-in (i.e. higher chances of folks not wanting to get involved. (Doesn't mean it can't happen though).   

Regarding the medication...lots of data, and a good idea that is generally safe.  It's being concurrently trialed in RA, SLE, and Solid Organ transplant.  Not sure if these other trials are further ahead (closer to the FDA Approval/licensing finish line) than the Sjogrens trials at present.

6. 25% of neuro sjogren patients develop trigeminal neuralgia. This pain is the worst pain known to the medical world. It is more painful than limb amputation pain of an accident. 25% of these patients commit suicide. MVD surgery gives hope, but that does not apply to trigeminal neuralgia caused in neuro sjogren.

hi happylife: I read that just in United States there  are 4 millions people with sjogren. Just in the United States.  Plus some millions  around the world
so 25%,  if your data are exact, more or less  one million people have trigeminal neuralgia in USA and more or less 250.000 commits suicide???
this seems very strange to me, odd that media do not speak about this!!!

Markt- I see it's being trialed for MG as well. We'll have to wait and see which AI reaches the finish line first.

bluegardenia- I agree with your thoughts on this.

My opinion at this time is that we should all be advocating for better treatment of autoimmune diseases plus better research for pain control. I do not believe in suicide for the simple reason that it can appear to be a very selfish act and destroy a lot of lives. Therefore we need to make sure that er get better diagnosis, treatment, etc. When these darn elections are over we need to pester our congressmen and tell them to get off their duff and get to working for the people who are paying their jobs. (This applies to all parties)

Having worked as a nurse with hospice patients I know that with proper pain control patients are able to interact with their family and have meaningful interactions and acceptance and love. Hospice patients are known to graduate from hospice back into the land of those able to have a fairly comfortable life. This is also true of those of us with autoimmune who sometimes suffer with pain and symptoms that seem to wane and ebb. Where their is life there is hope. I can tell you that seeking pain control can be difficult at times and takes a vigilant family using medical and non medical personal.

This is a tough subject and I know not everyone will agree with me. This is my opinion and it stops at the end of this post. Irish

I remember studying this subject when I was in college. If you look at some of the people Dr. Kevorkian helped, many of the diagnoses were not terminal. I found it so disturbing!!! One was fibromyalgia. I think the "health care" system failed these people in a major way.

Depression can come with pain and with a non fatal condition, there is always hope. If one doctor can't help you, keep looking for one who can and get treated for depression and pain. We go through some tough days but suicide is not an option!!!

Quote from: bluegardenia on October 22, 2018, 11:40:11 AM
6. 25% of neuro sjogren patients develop trigeminal neuralgia. This pain is the worst pain known to the medical world. It is more painful than limb amputation pain of an accident. 25% of these patients commit suicide. MVD surgery gives hope, but that does not apply to trigeminal neuralgia caused in neuro sjogren.

hi happylife: I read that just in United States there  are 4 millions people with sjogren. Just in the United States.  Plus some millions  around the world
so 25%,  if your data are exact, more or less  one million people have trigeminal neuralgia in USA and more or less 250.000 commits suicide???
this seems very strange to me, odd that media do not speak about this!!!

Hi blue

It is 25% of neuro sjogren get trigeminal neuralgia. (Neuro sjogren is 25% of total sjogren).

Also as per dr.robert fox prevalence of sjogren is 0.1% to 0.3% that should make the sjogren count as 400,000 to 1,200,000. Lets say 600,000. 25% of this is neuro sjogren 150,000. 25% of these develop trigeminal neuralgia which is 40,000. 25% of these commit suicide which is 10,000.

Quote from: irish on October 22, 2018, 04:12:27 PM
When these darn elections are over we need to pester our congressmen and tell them to get off their duff and get to working for the people who are paying their jobs. (This applies to all parties)

I'll second that.  It's not a problem to them if they don't hear about it.

I'd like to see the SSF calling representatives to see about having more legal teeth added to the FDA Expanded Access program on behalf of a patient community with limited treatment options.  What was passed in Congress last spring is a great start... and it has worked for me in one scenario.  It would be what it needs to be if Providers had more of an obligation to submit claims to the FDA on behalf of their patients that asks when the request is within scope of the law.  (Versus at the whims or inclination of any Provider).  Patients with limited treatment options need to be heard, or at least humored.  There is hope and healing in that as well.

Dear happylife and all my Sjogren's Angels:

I have what you would describe as "neuro Sjogren's".

My Immune neurological problems aren't caused by autoimmune Sjogren's, but by another mechanism deployed by my Immune Disorder, but the outcome and progression are the same.  I started with Sicca, in 2002, and now I have major neurological damage to several organs/system and the damage  is progressing

And yes, I am severely disabled by the neurological damage my Immune Disorder has caused.

However, my worst pain is caused by my osteoarthritis.  There is no clear scientific connection between osteoarthritis and my Immune Disorder. 

And I am not a good candidate for joint replacement, which would ease the pain of my osteoarthritis. Even if the surgery were  successful, I would struggle with recovery because of my neurological problems. 

It would be hard for me to carry out the aggressive rehabilitation program required to recover from knee replacement surgery, for example, since I have such profound neurological damage to my legs.

So have I considered taking my own life?  Since I was in my 20's I have determined that I have the right  to end my life. My life belongs to me, and if through pain and disability, the quality of my life has become severely degraded, I have the right to end my life.

However, I have actively sought out safe and appropriate pain relief, which allows me reasonable relief from my pain.  The pain is always worst when I wake up, but I am able to sleep well enough.

The disability which forces me to wear leg braces and to walk with a walker, severely limits the activities of my life.  But with the 'window on the world'  provided by my computer, and my joy in reading, and with activities that include a bridge group and a book club, I have enough to allow me a quality of life which I truly enjoy.

My husband drives me to appointments and activities.  Today I go to have my hair cut and colored, for example.

And I have my son and his family nearby, which also adds to my joy.

So with advanced 'neuro Sjogren's', and advanced age (76), I am not ready to end my life.

I do know, however, that it is possible/probable that I will want that option sooner rather than later.

I need to 'take steps' towards insuring that I have 'death with dignity' within my power.   I need to do my research again.

Thank you for reminding me.

Regards, Elaine

Dear Carolina

Its great hear your sjogren journey and your will to fight it out in spite of the pain that you are suffering.

I hope to take inspiration from you and try to fight it as long as i can.

Happy life,
Thanks for your well researched posting on this issue. I agree with Carolina that if and when I do choose, I will have the absolute right to end my own, one and only, unique life!

That said, I also agree that it is incumbent upon me to work at staying alive without TOO MUCH pain and discomfort.  In view of this, since my diagnosis this year, ( although heavily symptomatic for most of my life) , I am spending a good three hours daily reading research, other SjS patients experiences, Physician and treatment recommendations etc.etc.

It was through this research that I have started trying many of the suggestions made by folks and this and other SjS forums, including LDN and CBD oil.

However, in early 2018 I went through a very dark period when extreme dental pain in upper left turned into multiple extractions and eventually led to a TERRIBLE bout of Ocular and Facial Shingles.

For four solid months, I could not sleep, or function in any normal way.  The pain and the resulting post herpatic neuralgia were the worst pain I have ever had.  NOTHING would touch the pain other than drugs so strong I became almost comatose...

And YES, for the first time in my life I thought about possibly not being able to continue for much longer.   So I fully respect folks not being able to continue.    At the end of four months after having read all the data on percentages of PHN which continues over time, I found that, indeed about 20% of folks with shingles NEVER stop having the pain. Mi was mortified that I might fall into that group.

Thank Goddess, ever so slowly, I felt minor improvement until here I am now, no PHN.

So I say, fight as long as you can, but if you really have given it your all, you have a right to say BASTA!.

Not directly related to SjS or autoimmune diseases, but a beautiful documentary on assisted suicide is :
How To Die In Oregon.    Last time I checked it was on Netflix.