Author Topic: My Mom's Story- and Low-dose oral interferon lozenges?  (Read 3216 times)

ammasgirl

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My Mom's Story- and Low-dose oral interferon lozenges?
« on: March 22, 2014, 04:49:45 PM »
Hello-
First post- and posting not as a Sjogren's sufferer but the very very concerned daughter of one. My mother's English is poor so I am reading and posting on her behalf.

Like so many of you, she suffered from dry mouth for many years and was told by all her various docs that she was getting older and that she was lucky that she only had a dry mouth, and was essentially healthy. She coped well for many years, using artificial salivas, mints, gums, supplements, but then the dry mouth got worse, and she suffered some severe emotional setbacks as well (loss of several siblings and close friend within a couple of months and then my father's retirement which disrupted her routine of many decades) and she had what years ago would have been called a nervous breakdown last month.

Basically, she became afraid to eat or drink as she was having so many uncomfortable sensations. She would feel like she was going to choke, even on water, and everything, even sweets tasted salty to her. She became almost unable to eat, and became housebound, panic-stricken, and severely depressed. This resulted in a hospitalization of a couple of weeks (medical, not psychiatric) and she was tested for absolutely everything. She tested positive for primary Sjogren's, and was started on Evoxac, as well as Remeron (anti-depressant which promotes both sleep and appetite) and Ativan for anxiety. Again, as so many of you have experienced, she had good care from good doctors but also a lot of "there's not a lot we can do..." and "you're basically very healthy...". The rheumatologist she is seeing is extremely conservative about treatment, particularly with older patients, and says she doesn't want to see my mother get another illness from overly aggressive treatment- so steroids, plaquenil, etc...

The problem is- my mother isn't getting much relief (at least not yet) from the Evoxac. She was briefly switched to Salagen to see if that would work better but she felt it actually made her feel drier. Her anxiety and depression are definitely playing a part, of course, in her feeling so unwell, and the psychiatric medications could be adding dryness as well, but they are absolutely essential at this point. So we are at a standstill- more than 5 weeks post-hospital, with very little change- both in Sjogren's symptoms and in her depression. I know it's still early days on all the meds, but I so desperately want her to feel some hope. She is 74, underweight, and feels absolutely no hope that she will ever feel better and no doctor offers much hope. I am heartbroken for her because she was the most active, caring, fun-loving person I knew and she now rarely leaves her bed.

I have researched my heart out, and have come upon one thing which seems to be (in the limited studies, at least) both effective and very safe- low-dose oral interferon. It apparently acts directly on the immune system, almost resetting the attack on the immune system, so it's not just a sialogogue, but could actually help all the Sjogren's symptoms. The drug is being studied to help cure the flu too, and is surely going to be FDA-approved...eventually. I know some people are able to get the drug through a Canadian manufacturer, with a doctor providing an RX saying they will be monitoring the patient. My mother's current rheum says, "interesting, I haven't seen the studies... no don't print them for me, no way I can prescribe that."  Has anyone had any luck with a doctor willing to stick out their neck a little bit like this- writing an RX for a still experimental drug? We are Northern Virginia, near DC, but would certainly travel to see a compassionate doctor. My mother is apparently too healthy for any more treatment but she is voluntarily bed-ridden and won't be healthy for long if she doesn't get some relief.

Here's one bit of research on the oral interferon:
http://www.healthnewslink.com/images/stories/Human/s10apilot.pdf

Thanks for listening to this long post, and I wish all of you so much hope, healing, and happiness.

Mia

cccourt1942

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Re: My Mom's Story- and Low-dose oral interferon lozenges?
« Reply #1 on: March 22, 2014, 06:04:26 PM »
Hi Mia...those of us on this board yearn for family members to be interested in this syndrome.  You are to be commended.  I am going to say several things about the study itself.  Actually, studies themselves.   Though a dentist's name is on the study, it was likely done by students for a class.  The subject size is small.  Research articles supporting their rationale, etc. were 8 + more years old.  Those two points concern me when reading a research paper.  Studies are performed to be replicated.  Did you find anymore studies?

Oral interferons are powerful drugs for powerful conditions with uncomfortable side effects.  Are you saying you believe it will reverse the autoimmune disease of Sjogren's with this drug? 

I want to say I may be overstepping myself as I am new at all this.  The only area I qualify in your concerns is that I am old..and I'm a mother.  Like your mom I was ill for many years as the disease wore me down to the nub!  I felt nothing but relief with a diagnosis. 

I learned the medications take time to give relief.  I see others say this day in and day out.  There isn't a miracle instant medication.  You note your mom used various artificial salivas, gums, mints, etc. for years.  She may need to keep using them along with her medication until she can feel true relief.  My favorite OTC supplement is Xylimelts.  I mention them so often I am sure people believe I own the company.  (I don't.)

As to her appetite and interest in food: I too stopped eating numerous types of food years ago.  I had zero idea part of my problem was not being able to swallow properly as we don't have enough mucous to lubricate our esophagus.  I have eaten softer and softer foods..and if it weren't for nutritional needs, I could live on soft yogurt!!  Another thing, we lose taste and smell ....we don't look forward to food like we used to.  We are weak and don't get excited about the least amount of exercise.  We get weaker.  Is your father as concerned as you are?  One of my favorite soft foods are squashes.  I love baked acorn and butternut squash.  Add butter and xylitol...yum.  Would/could he bake these for her?  Does she even like them?

At this point she may suffer reflux since she is in bed so often. 

You are relatively near Baltimore.  Johns Hopkins has a Sjogren's center.  If she is terribly weakened this may be a daunting effort for her.   With your help as well as your dad's, she should have enough support to get to a top notch location and doctors.

Since you are unsure of her present physician, even if you can't get to Maryland, you can at best get her to a more sjogren's and "elderly" friendly doctor.

This is just my feeling and take on all this.  I do wish you luck, and again, thanks so much for loving and caring for your mom.  You are an angel.  Please continue your gentle care.   From your description I am reading she is having a hard time emotionally and the sjogren's is secondary to your immediate concerns.  Remember...our daily med routine, our constant tending to our "symptoms" is depressing even if we are not clinically depressed.  For instance, I have stomach woes with my medication so I spend a lot more time in my house than I ever did as I am afraid I will get out and have an urge and/or possible accident.  It limits you.

You are on a site with lots of people who have lots of experience and info to share with you.  Let us hear an update on your mom periodically.
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

warmwaters

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Re: My Mom's Story- and Low-dose oral interferon lozenges?
« Reply #2 on: March 22, 2014, 07:05:35 PM »
In answer to one of your questions, there are some doctors who are willing to try various treatments that not normally considered. I'm lucky enough to have one, though I'm in a different area of the country than you.  But I think that most doctors would be unlikely to start with the more experimental treatments, but would progress to them after trying those things that give relief to a larger portion of the Sjogren's, and have lower chances of side effects (though I am not familiar with the side effects of oral interferon).

Usually starting point are things to relieve the dry eyes, dry mouth, and any aches in joints or muscles. Plus possibly plaquenil, which helps some (though immediately - 6 months is often the time frame given), and prednisone, which helps with inflammation. Other people find certain diet regimes help, such as gluten free and dairy free.

Depending on the outcomes of this, then stronger drugs, including those that suppress the autoimmune system. But those have their own problems.

If I can suggest the following: you have a short term problem and a long term problem.  The short term problem is to to help your mom feel better and get her eating again. This might involve medicines for her dry mouth and depression, maybe some counseling to help her deal with the personal loss that she's had, and experimenting with a variety of foods til she can find some things she can eat. There are times when the Ensure nutritional drinks are just the ticket, just to get someone getting nutrition in again. And explore any other soft foods that might particularly appeal to her.

The long term problem is helping her find the right doctors to treat her Sjogren's.  That will be an ongoing process, and it may take a while. But helping her regain a better feeling about herself and having some hope are important too.

It's so good that you are trying to help. Please let us know how you and she are doing, and welcome.
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

ammasgirl

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Re: My Mom's Story- and Low-dose oral interferon lozenges?
« Reply #3 on: March 26, 2014, 06:58:01 PM »
Thank you so much for the kind words and the advice, cccourt1942 and warmwaters. It makes me sad to hear that so many people aren't getting enough support from friends and family. My life has sort of stopped in order to help get my mother well. This disease is so little understood, and so under-researched, that it seems there's not much help to be had from medical professionals, so compassion and care from family is so crucial. I hope that everyone is able to find the support and help that they need through this too often devastating illness.

One sad example of the lack of understanding: one night in the hospital, my mother was having an outright panic attack along with terrible stomach pains, esophageal spasms, and such a dry mouth that she thought she was going to choke and was afraid to even take a sip of water. She was given five, yes five EKGs and five cardiac enzyme tests, and two chest x-rays within one hour. No doctor actually looked at her, spoke to her, examined her, or tried to explain anything. She was sure she was dying on the spot. I had to practically drag the doctor into her room and said she was going to pass out from fear and pain, and he got close to her and I thought he was going to examine her. He got in her face and said, "NOTHING IS WRONG WITH YOU. MY MOUTH IS DRY TOO AND I'M NOT DYING. CALM DOWN!". I was incensed and got the supervising physician who finally gave her protonix and ativan so she could sleep. But this is the type of treatment I suspect far too many Sjogren's patients suffer through every day, even when they are so ill they end up in the hospital.

You're right, of course, cccourt1942, about the study I linked before. Most of the oral interferon studies are quite small, and outdated as well. It seems like the clinical trials involving oral interferon right now all involve the flu, hepatitis C, or Behcet's Syndrome. Much of the evidence about its efficacy for sicca syndrome in Sjogren's patients comes from a Japanese study done in Japan nearly 10 years ago. The results looked very very promising, and the dosage of interferon is tiny- 150 IU in a lozenge 3x a day, compared to 15 Million Units intravenously when used in treatments for lymphatic cancers.  My understanding is that it's a natural human protein and an immune modulator- so it doesn't suppress or stimulate the immune system, but corrects any imbalances you might have, so in Sjogren's, it would hopefully help your immune system stop attacking the salivary glands and start working to bring down inflammation. In flu patients, it didn't stop people from getting the flu, but the symptoms were greatly reduced as people's immune systems are quickly boosted to fight the virus. The lozenge will probably be released under the trade name "Veldona".

A link to that Japanese study:

Japanese study on inteferon and Sjogren's


Thank you all. Wishing you all peace and healing.
« Last Edit: March 26, 2014, 07:01:09 PM by ammasgirl »

Jasper

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Re: My Mom's Story- and Low-dose oral interferon lozenges?
« Reply #4 on: March 26, 2014, 07:54:10 PM »
I am sorry your mother is ill and going through all of this. It is great that she has you helping her get through these difficult times.

Many of us have heard the same things or similarly unhelpful statements that your mother was told. "You are getting old." "You are going through menopause." "You are overweight." "You are depressed." "Just exercise more and you won't be tired." "The sun will be out in a couple of months and you will feel better." We have heard it all.

I find it unfortunate that your mother's doctors seem to be dismissing her symptoms as not very significant. Having a dry mouth is very uncomfortable and it makes it difficult to swallow, take pills, or eat dry food (including solid food such as meat, bread, etc.). I take pills one at a time and I still choke on them. I never eat food without having something liquid to help get it down because it will get stuck. 

It is not only the mouth that is dry, but also the throat and esophagus. In addition, some with Sjogren's have esophageal motility problems. Gastric distress of one type or another is common in Sjogren's.

Many people with Sjogren's also have Depression.

74 is not old. I realize it is not young, but just because someone is 74 does not mean that they cannot be treated. I am 68. I sure hope my Rheumatologist does not decide not to treat me when I turn 74. Several on the forum are in their 70s and they are receiving treatment.

If it was me, I would find a different Rheumatologist who is willing to treat the symptoms and the disease with the available medications. I would look for a Rheumatologist at a university affiliated medical center.

I have had symptoms for years and years (all missed and dismissed by my previous doctors). I was diagnosed last August by a Rheumatologist and was started on Plaquenil. I feel considerably better since starting on Plaquenil. I have had no side effects from it. I am also taking Restasis for my dry eyes and I use MighTeaFlow products and Biotene mouth rinse for my dry mouth. However, the dry mouth improved after starting Plaquenil.  I use a small potable humidifier in my bedroom and this helps too.

I looked at the links for the Interferon treatment. I don't really understand if or why it would work. Interferon treatment ramps up the immune system and is known to trigger Autoimmune Disorders, so I do not understand how it could help Sjogren's. Maybe it is dose related. However, I would be cautious about Interferon treatment. I also think that if it was truly successful and if it did actually work, then more Rheumatologists would be using it. Maybe I am just missing something.

I still think it would be a good idea to  find a Rheumatologist who does not think someone who is 74 years old is too old to treat and who is more open to treating  your mother with the accepted meds for Sjogren's.

Best of luck.
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susanep

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Re: My Mom's Story- and Low-dose oral interferon lozenges?
« Reply #5 on: March 27, 2014, 02:22:23 AM »
I am so sorry to hear of all your mother has had to go through, and for you too. It just upsets me to no end to hear of that insensitive person saying that to your mother like that. I would not want to see them again.

God bless you both,
Everyone is here for both of you

susanep
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Gazelle

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Re: My Mom's Story- and Low-dose oral interferon lozenges?
« Reply #6 on: March 27, 2014, 03:26:12 AM »
Hi ammasgirl,
sorry to hear of your mother's symptoms and treatment by the horrible hospital staff.
Everyone deserves to be treated with respect no matter their age, colour, sex etc.
I agree with Jasper - I would be very wary of Interferon.
It is known to cause or trigger autoimmune disease in patients treating for HCV amongst others - nasty nasty stuff.
Mind you, I'm no medical expert, and the dose is small, but I wouldn't take that risk.
It could open another can of worms.
I really wish your mum well and hope things work out.
You are a wonderful daughter to look out for like you are.