Tests and medications

[Flower_medicine]

How often does your rhumie run blood tests? Also please tell me at what point after diagnosis did you start on medications and what types?I have been diuagnosed for over 3 years now but on no meds.I feeling as if things are progressing. I need too be educated.Thanks

[Joe S.]

I have not seen a rheumy in several years. I had bad reactions to the suggested meds. My list of medications and supplements is listed in my signature. Check everything for counter indications, side effects, and drug interactions before you take anything.

I will suggest you start your journey by researching a couple of supplements. D3, omega-3, Acetyl-L-Carnitine, and R-Lipoic Acid. An extra vitamin C helps me also. Recently I have had to increase my inositol.

[Jasper]

My Rheumatologist runs some "routine" lab work every 3 months and sometimes more often if needed. Some tests are run every 3 months and others every 6 months or yearly. If I need specific tests so I can start on a new med, then those tests are run. If I need monitoring because I am on a specific med, then those tests are run as indicated. 

I am on Plaquenil (since diagnosis in 2013), Vitamine D (since diagnosis in 2013), Restasis eye drops (since 2011), Rituximab infusions since Feb. 2016. My doctor puts all of her Sjogren's patients on Plaquenil. I had low Vit D so I am on Vit D. My eyes were very dry so I am on Restasis drops. I had many Sjogren's flares, arthritis, peripheral neuropathy, severe fatigue so I was placed on Rituximab.

Plaquenil helped with joint pain and some other symptoms. Hopefully it is slowing down progression. Restasis has significantly improved my syes so they are not dry as long as I use the drops am and bedtime. Rituximab has significantly improved my symptoms of fatigue, joint pain, neuropathy, saliva, cognitive function. Rituximab has made the most difference in how I feel. It has given me back a good part of my life.

I don't know where you live, but if your doctor is doing nothing for you, I would suggest trying to find a new Rheumatologist who is affiliated with a large teaching facility or university affiliated medical center. Those doctors will usually be the best educated and will be more up to date on the current treatments for Sjogren's Disease. Even if it is a 2-3 hour drive, it is worth it to have a good Rheumatologist who actually treats you and your symptoms.

Here is a link to the new Treatment Guidelines for Sjogren's Disease:

http://www.sjogrens.org/files/research/RheumatologyCPG.pdf

It is long and detailed, but it is well worth the read and it gives you some idea of what types of treatment are recommended.

Best to you going forward.

[Navigator]

The last two posts offer different approaches. What are your symptoms?   I was diagnosed shortly after a major flare with excruciating pain....I was put on plaquenil from day one.   You should see an ophthalmologist (i.e. an MD) to check on your eyes.  If you are using a lot of eye drops you would be better off with Restasis.  If you have dry mouth and it is affecting your teeth or sleep you may benefit from Evoxac or a similar alternative.   Treatment is very symptom oriented.   You may need mega doses of Vitamin D.  It would not hurt to take supplements like Vitamin D no matter what. Most of us are deficient.  Your Vitamin D levels need to be checked.

I have blood work once a year. I see my Rheumatologist once a year although I used to see her every 6 months. I am pretty stable. Once you are diagnosed there is little benefit in rerunning the antibodies and arthritis panel.  Markers of inflammation and blood counts are more instructive. Many of us have low white blood cell counts.

The beginning drugs are plaquenil, evoxac (or equivalent), Restasis, if your symtoms evolve you move into stronger drugs that act to tamp down the immune system.  Look at the tag lines at the bottom of the posts and you will see what each of us take. It will give you some idea.  I also recommend you go to your library and ask for a book on Sjogrens.  Your librarian should be able to borrow one from the system if they do not have one in your individual library.   The is also a Sjogrens Foundation website that has material.

There are many people here to help you. SJS is manageable for many.  We all have a different journey.

[irish]

I have had symptoms since around 1964 and didn't get diagnosed with Sjogrens until 2003. I was referred to immunologist in 2006 after many health issues and was not put on Plaquenil until around 2010 or so.

My immunologist is very, very good and highly thought of in the state, USA and world medical community. He doesn't believe in overdoing the blood work. As he often says he treats the symptoms not the blood work. He also doensn't feel that doing blood work real often proves much of anything as the autoimmune markers can come and go and can be often missed anyway.

I probably have some blood work done 2 times a year but not always the same blood work. He does my sed rate occasionally as I have never, ever had a positive sed rate. Also, the ANA and Sjogrens and myasthenia graivis blood markers may get done every 1/12 years. They were positive at one time and it doesn't do much good to keep checking them as once they are positive that is what counts. If they go negative it means only that they are negative at this blood draw but still have the diagnosis.

Blood work is very fickle as it can change from one month to the next and possibly even one week to the next. The one test he does run about once a year is the double stranded blood work that tests for Lupus. He has felt that I have lupus but has not ever given me that diagnosis. My dermatopathologist first treated me in 2002 for Bullous Pemphigoid which is an autoimmune blistering skin disease. At that time he thought I probably had lupus also.

I do not ponder over my blood work and never have. I now have 5 autoimmune diseases diagnosed by blood work and biopsy and 2 immune deficiencies and I still don't worry too much about the blood work as it doesn't seem to change how I feel. Sometimes my immunologist will do blood work for some off the wall autoimmune disease cause he will see some new symptoms that he thinks warrant investigation. He is so smart and knows so much about autoimmune disease and what tests to use. Many are very unusual blood tests.

My hubby saw my immunologist also and was on IVIG for about 10 months. He had Celiac Sprue and microscopic colitis and I had my immunologist see him because I felt that something else was going on.. Well, the exam and blood work was done and hubby had low IgG levels in 3 areas plus a positive Mannose Binding Lectin. I had never heard of this lectin thingy and did the research. Turns out that a certain per cent of the world population has this lectin but it doesn't cause any problems usually unless the patient has other immune deficiencies and then the lectin and immune deficiency kick things up a notch.

There are so many other blood tests that get done to check us out and it just goes on and on. If anyone has any unusual blood test that was done it would be interesting if you would tell it what it is and why it was done. Thanks. Irish

[cccourt1942]

Flow Med:
    The first year once every 6 months..then to once a year.  I have another condition which requires blood work each 6 months...I use a practice called  "---"  Diagnostics.  All doctors have access to all records.  It's wonderful as my neurologist is in charge of a condition which should be taken care of by my rheumy.  Things happen.  Anyway, they can quickly see past blood "letting" and do not order tests which are current.  I like that a lot. 

     As to advancing symptoms, this is why you are associated with your rheumy.  Time to visit and give him/her new symptoms or worse symptoms.  I was placed on pilocarpine immediately, the supplements discussed (Omega 3 and Vit D) , then the plaquenil---then the Restasis. 

Hope that helps.  Sorry you are at that phase where everything is stepping up.  It's disconcerting. 

Best to you,
Sjoldier c3

[JoanElizabeth]

Due to my medications I get blood work done once a month, however that is just basic CBC and CMPs for liver function. Due to also having Celiac I get certain blood tests every 6 months. However once disagnosis with SS unless you are on meds that require it or you are someone who's Sed Rate or CPR correlate to disease activity (which seems to be very few people) there is not a ton of need for constant blood tests.

[WhatYouSjo]

For the first couple years I had at least some blood tests every 6 months. Now I am annual, mainly to see if I test positive for autoantibodies and to monitor my blood and platelet counts and vitamin levels. If I ever actually tested positive for SS-A/SS-B, they would probably become even less frequent.

I started Restasis nearly two years before my diagnosis, when my only symptom was dry eyes. I was put on Plaquenil immediately after my diagnosis (based largely on symptoms since my blood work was negative). Started helminthic therapy the next year, and low-dose Naltrexone a year after that. During that period I tried a couple different paleo-variant diets and several supplements (see my signature).

I would expect that your doctors would start you on Plaquenil after a diagnosis, as well as Restasis and/or Evoxac for symptoms.