Should i demand Immune suppressants?

[happylife]

Hi All,

I have the following symptoms.

1. Inflammatory dry eye since last 15 months
2. Dry nasal passage (when i sleep to left my left nostril gets blocked in 30 seconds and vice versa when i turn right)
3. Dry mouth (i have much less saliva compared to my family members and below the tongue i see frothy saliva, my lips stick to my teeth at night)

My SSA/SSB/RF/ANA factors are all negative.

My rheumatologist says i dont have sjogren.....but when i ask him what it is he just says dry eyes !!! why is he ignoring dry nose and mouth i do not understand. He says if i am really worried i should get a lip biopsy done.....which i do not want to do.

In my mind i think my symptoms for last 15 months can only be explained by sjogren only.

QUESTION : Is it a good idea to say that i believe that i have sjogren and demand immune suppressant from my rhumy?
Will this help disease progression?
Will this improve my current dry eyes, nose and mouth?
Once sjogren is confirmed does the patient get immune suppressant for their entire life?
What are the common immunesupprasant given which works well for sjogren patients?

Thanks

[Kristian]

Get the lip biopsy.  That will give youa  definitive answer and will allow your rheumy to treat you for Sjogren's.  Your doc should be willing to give you salagen or pilocarpine to help with producing more moisture (mouth, nose, and eyes).  Normally a rheumy will treat the symptoms, if not you should find one that will treat the symptoms if you are suffering.

For the nasal dryness I use "Polnaris" in my nostrils every night with a Q-tip.  You can buy it on amazon, it does wonders for keeping my sinuses more moisturized as my mouth and eyes anf everything dries out completely every night.  Other people use vaseline or saline gels, it is whatever works best for you.

The immune suppressants are  big deal and you need to be thoroughly checked out first and will need something definitive test wise to get insurance approval for treating auto-immune disease.  Without insurance the treatments would be anywhere from $2,000 to $10,000 per month.   Mine with insurance is $2,000 per month and the manufacture covers the rest through a program.

Hope you have better luck in the future.  I would try another doctor first if you are not getting treated how you want.

[markt]

I had a renowned Rheumatologist here at Mayo Clinic Jacksonville tell me that I did not have Sjogrens (because I was SS-A/B sero-negative)... right smack in the onset of my first inflammatory autoimmune flare/attack.  I felt like my body was shutting down, and was in incredible pain... yet the guy turned me away and did not even prescribe low-risk first-line treatments that could help put me at ease mentally and buy time (Pilocarpine/Salagen, Plaquenil, etc.).   Instead I was sent empty handed, while by immune system was literally on fire... 

That said, he did not have the benefit of a lip-biopsy indicating significant lymphocytic foci/auto-immune induced scialenditis.  Therefore, I received no treatment and suffered a while longer while seeking out a diagnosis through other practices.... long story short, I went on to do the lip biopsy (and more in-depth lab work), leading to a confirmed diagnosis at Johns Hopkins, received Rituximab infusions, and am actually doing a lot better (and hopefully preserving some bodily function in the course of this), as current treatments do nothing to stop the systemic immune response. 

Long story short, do it so that you can get proper care (yes in some cases that means immunomodulatory therapy).  Having the diagnosis is critical for insurance coverage of treatments as well.

Rituximab does suppress the immune system, but it is administered in a very controlled environment... and you would take the same normal precautions you should as if you weren't on the medication.  (Avoid sick people, clean/sterilize things you touch often, etc.).  I suppose younger folks handle it better as they are in general less prone to respiratory infections or have a recurring need for various surgeries, etc.  But that is just a generalization.   

[SjoGirl]

So there is something called Sicca syndrome that can be a stand alone issue or be part of a disease process. I caution about a lip biopsy because I had all kinds of markers for AI, but my biopsy proved negative so Hopkins said, no not SjS. As well, in my case the biopsy was painful and took months to heal.

I would say: 1. Find a very good ophthalmologist and have he or she do a Schrimer's test on your eyes and look at them for other reasons why they might be dry. Dryness has multiple causes.

2. Ask your dentist about your mouth. She or he is likely to know if your mouth is drier than normal.

3. Record any other symptoms, e.g., painful joints, inability to sleep, difficulty swallowing due to dry mouth, recurring infections, etc. Keep that record and, if you can, find a new rheumy and share it with her (or him).

Also consider other possible reasons for dryness. I say this because immnosuppressants have side effects, such as getting more infections. I take an immunosuppressant, but it was only prescribed after we tried many other drugs and lesser treatments failed to work.

FYI I do have an inflammatory AI, the only question is do I have SjS or sero-negative RA or as Hopkins said, do I have undifferentiated connective tissue disease. It didn't matter after a while as treatments are the same for many of these illnesses. 

[Joe S.]

I have a different view on this topic than most do.

1. support your immune system it is doing its job.
2. the problem is nano-bacterial infections so:
    a. I take acetyl-L-Carnitine to repair mitochondria cell damage
    b. I take R-lipoic acid to remove the debris from the repair

Good luck in your search for answers. A few years back Mayo Clinic doctors did not believe in auto immune diseases and so did not diagnose them.

[Carolina]

Hi, happylife,

I'm not on immune suppressants for reasons I've described before.

And my usual response to the issue of demanding, or requesting, a medication, or taking one on offer, is that I can always 'try a medication' and see what happens.  If I get better, feel better, then I stay with it, if not, I can always stop.  This is not true of surgery, which once done, cannot be undone, of course.

That said, I believe that Immune Suppressants usually require substantial symptoms and positive test results before most physicians will prescribe them.

I have read, on this forum, of physicians who do prescribe Immune Suppressants without the usual positive test results.  So that does not to need to be a barrier in all cases.  In that case, the effects of the Immune Suppressants will show if they are needed.  The results would be less pain, fatigue and depression, and a slowing down of the progress of the Immune Disorder (harder to measure in an individual case of course, but established in large clinical trials).

I have also read here that Immune Suppressants can often take many months to truly show results for the patient. So patients must truly be patient.

And of course Immune Suppressants are powerful drugs, with often powerful side effects.   The side effects can be monitored and managed in many cases, also, which is the good news.

Side note:  I have never demanded anything from a physician, have you?

Bottom Line:  Find a physician willing to try Immune Suppressants, and see what happens. 

Suggestion:  Make a careful study of the Immune Suppressants you may want to request, so that you can have an informed discussion with your physician. 

Regards,  Elaine

[happylife]

Hi Elaine

I appreciate your inputs. Next time i meet my rhumy i will discuss the pros and cons of immune suppressant.

Thanks.

[Deb 27]

get a 2nd opinion and get a lip biopsy. There are lots of Seronegative folks out there. Make sure you get a good ENT to do that.

Find an eye doctor to give you restates eye drops or something similar and like others have said, a good dentist and good dental care. Biotene is good.  I use a prescription strength Colgate toothpaste for dry mouth and it has a lot of extra fluoride in it to prevent cavities.

[happylife]

Hi Deb

Im already on restasis.

Having read the stuff on internet.....i hear that lip biopsy is painful and 20% of patients suffer nerve damage.

Also my rhumy told that lipbiopsy is only a diagnosis tool.... Not a tool for medication. So he said he will medications like salagen, plaquenil, anti inflammatory or immune suppressant only based on symptoms.

Btw is systemic anti inflammatory and immune suppressant given to very few patients or to a lot of sjogren patients?

Thanks

[WhatYouSjo]

I would caution against a lip biopsy. My diagnosing rheumatologist believed that they aren't worth the risks and that modern doctors are too dependent on labs and tests. My lip biopsy took some time to heal, and I still have a small spot below my lip that has less feeling than the surrounding area. For all of that, my biopsy did not even meet the focus score needed to be positive. Even though I am seronegative, I have been able to have medications prescribed for me and covered by insurance, though I have not tried anything as expensive as a biologic drug.

My primary advice is to find a new rheumatologist if your current one refuses to take your concerns seriously. If you cannot establish a trust relationship with your primary specialist, you will be unlikely to improve through conventional medical treatments. My first rheumatologist essentially told me that my disease was in my head, though I had more systemic symptoms at the time than you do. Luckily I found an excellent rheumatologist through the advice of another doctor. Ask around, get recommendations from patients and doctors you trust. Being at a well-regarded institution does not mean that your doctor will prioritize your health; in my experience, small clinics often offer the best chances of getting a good doctor because they have more control over their schedule and can listen.

What do you mean by 'immune suppressant'? No drug has been approved to treat systemic Sjogren's Syndrome, though there are many drugs currently in clinical trials. Off-label drugs include antimalarials (e.g. Plaquenil), chemotherapy drugs (e.g. Methotrexate), and biologic drugs (e.g. Orencia). Antimalarials generally have the lowest risk of side effects, while biologics generally have the highest. You could ask to start with Plaquenil and see if it helps, though it is generally more effective for systemic symptoms like joint and muscle pain.

I'd also encourage you to investigate alternative therapies and lifestyle changes. Many of us have found improvements with low-dose Naltrexone, helminths, supplements, dietary changes, regular exercise, and more. You can see my own treatment regimen in my signature. While you should be skeptical of anyone trying to sell a 'cure', treatments can provide relief from symptoms.

Edit - I just noticed your most recent post stating that your rheumatologist is willing to prescribe treatments based on your symptoms. It's a little unclear exactly what he is willing to prescribe, but even the best rheumatologists have to weigh side effects against potential treatment benefits. While I am a strong seronegative patient advocate, I would be hesitant to push for the use of powerful biologic or immunosuppressive medications for just dryness symptoms, as they are generally less effective for dryness than systemic manifestations of SS and come with considerable risks. I would recommend trying Salagen and Plaquenil and seeing if they help, as well as alternative therapies and lifestyle changes.

[cccourt1942]

Happylife:
      Slow down on all this.  Adjust to level of discomfort AND TREATMENT where you are today. You're 41. When I was around your current age, an eye doctor asked if my eyes hurt. When I said yes, I added "this is West Texas...everyone has eyes that hurt." I had zero idea anything was wrong as I worked full time, too many things to do.  By 50s, I accepted menopause as one last curse of women!  Until I was about 65 years old, my only illnesses seemed to be sinus infections, treated with depomedrol injection, Medrol pack and antibiotic for those.  Little did I know a Medrol pack is the go to drug for Sjogren's flares.  Looking back I believe many of what people call flares coincided w' my sinus infections and treated my undiagnosed fsjogren's...quite by accident.
     In my profession, we drank water...LOTS of water.  Being thirsty was nothing to me. 
     I read the entries of young people here and their fears.  Believe me: I was stunned w' my diagnosis.  What I didn't know at the time, a diagnosing rheumatologist has to a) diagnose, b) explain the disease, and c) give you the good, the bad, and the ugly.  IN THAT ORDER.  As you wander out of the office, the last thing you heard stays with you. I was in a virtual state of shock for about 3 days.  I was retired but still worked part time.  Eventually, work days came up.  I had to move my body.   And so I did.  And I've kept moving.  Just more slowly!!
     Sicca or Sjogren's?  Sicca is, indeed, what Markt stated:  dryness.  Sicca is, indeed, derived from Latin meaning dryness.  Quite simple.  Where these other thoughts or stories of its meaning have always left me SMH.  Anyway, GOOD doctors will treat the symptoms.  CAREFUL, informed doctors may Rx Plaquenil with or without SjS dx.  What you must learn (by searching) is that there are no sufficient studies to show plaquenil (hydrochloroquine) slows down the advancement of the disease.  This product is offered because it appears it is the only drug which they HOPE will do that---AT THIS TIME.
     Your question: should you demand immunosuppressants?  (oh dear..that's showing misspelled)....I was offered LDP (low dose prednisone) at age almost 73.  I had a history (albeit one and nearly 20 years previous) of an NSAID stomach ulcer.  My rheumy felt comfortable with the treatment due to my age.  How much longer could I  live to do damage to my stomach?  Well..we learned: 3!  We were all surprised as I was taking Nexium.  So the time has come...Rituximab (sp?) or methotrexate?  I don't want either as it really does NOT seem my discomfort from SjS has increased.  I am so old I think it's all arthritis types (NOT rheumatoid) and my rheumy agrees.   All this to tell you:  you have decades to go before your disease has either advanced, or ....prayerfully medicines have come along to truly treat the disease or Plaquenil (or a new drug) has been shown to slow the disease down.  In my local Sjogren's group (Dallas, TX) we have well over 1,000 members.  We are all ages.  The members who are looking for the cures are the ones your age.  Naturally!  The rest of us?  Well  we are busy dealing with other old age onset things.  Many connect them to SjS.  I don't.  I could be wrong.  I choose to manage the symptoms/conditions.  I do have other autoimmune diseases.  Everything is managed.  And what is managing all of them?  I think the LDP. And there is the answer to your question.  Here's the bad news:  remember the stomach ulcer.  At your age, it just isn't wise to start on this drug full time--low dose or regular bursts.  LONG before I was SjS positive, my GP had a rule of no more than two Medrol packs (for sinus infections) per year.  His rationale was: "You'll need this drug when you get old."  I thank him regularly.  ONE of my conditions accompanying SjS is treated with:  30mg pred per day @ 3 days, 20mg @3 days , 10, etc, etc.  It's a LOT.  That amount is what I take following an ER room pain injection.  I am allowed a 4mg Medrol pack if I feel it coming on and I'm on a trip to head off an attack.  Whatever, you can see the amount it is on top of current 3mg pred per day (but started at 5mg of pred per day).  It's a lot.  You do NOT want this in a 41 year old body...nor dependent on it.  I am NOT a medical professional.  I am an old woman who depends on a small amount of prednisone daily and would tell my own children what I am telling you.  You have another WHOLE life to live at your age (in fact 41 years +)
       Your SjS dx may or may not come along--with or without a lip biopsy.  What you want are the drugs which keep you comfortable: Restasis or Xiidra, and Evoxac, salagen, pilocarpine, etc.  Once you have quelled your physical discomforts, you'll feel more comfortable, you won't be as desperate for the meds you are wondering about.  Or...that's my 2 cents! 
       Hoping you have a relaxing week-end,
Courtenay

[happylife]

Thanks Courtenay.

I will not ask for immune suppressant in the near future.

[Carolina]

Dear happy:

About anti-inflammatories:   I have tried many, and found that Naproxen Sodium (tm Aleve) helped me greatly.  I took it successfully for many years.  But finally I had stomach irritation that was serious (pre-ulcerous) and had to stop.  One of the best aspects of Aleve is that one dose is effective for 12 hours, so I took it once in the morning and once in the evening.

Now I cannot take any of the usual NSAID drugs (Ibuprofen, Aleve, others). 

I do, however, take a low dose of methylprednisolone (which is like prednisone) and have taken this for over four years now.  Of course it helps with inflammation, but I take it to avoid a strong reaction when I have my IVIG every four weeks.

You have have anti-inflammatory medications by prescription, or bought over the counter in a drug store, in the US.  They are very common.

Since our Immune Disorder is primarily a disorder of inflammation, it is important to try to control inflammation, not just because it causes pain (which is surely does) but because it is also damaging our organs/systems.

Regards,  Elaine