Trial and Error

[2tired]

65y/o female diag 6 yrs ago, but probably had it at least 10 more yrs. On hydroxychloroquine 2x...1st time taken off due to suspected eye problems. Went to local med school for 2nd opinion, put back on but never experienced same improvement as 1st time. Then rheumy wanted to try quinacrine, a related med which has to be specially compounded.  After taking for abt 9 mo, I thought my skin had a yellow tinge.  After being taken off this, I realized it had been helping and I had more pain and fatigue. So now the rheumy wants to try chloroquine a relative of the other two meds. The reason I chose this rheumy was because he was listed as one of the nations "TOP DOCS" and was chairman of the dept.  He also told me something that seemed to be in conflict with what my former rheumy said.  She said that these types of meds "stop the progression of the disease." The "TOP DOC"rheumy  said that they control SYMPTOMS, but would have no effect on stopping the disease from causing organ damage or getting lymphoma. I am considering just not putting anymore chemicals in  my body because even when they help, the symptoms are still there. He also said that if I was going to have any major organ involvement that it would have happened in the first three years. What exp has anyone else had with these lesser known drugs, quinacrine and chloroquine? And what about symptom control vs disease progression. There are not alot of rheumies here but I thought going to one affiliated with a med school might give me access to more option

[Carolina]

Dear 2tired,

I have no personal experience with these drugs.

I looked up Sjogren's and NIH (National Institute of Health, the major federal program that funds research, among other responsibilities).

All NIH sites indicate that all drugs used for Sjogren's only treat symptoms and cannot stop the progress of the disease.

Very few autoimmune conditions have treatments that can stop the progress of the condition.  As far as I know, only RA has such treatments.

Best wishes in your quest for improved health and quality of life.

Hugs

Elaine

[Joe S.]

Welcome 2tired. I am not able to take plaq or MTX so I use a number of alternative therapies to manage pain. Like you I have heard both but believe that they just suppresses symptoms. I have not read any documentation to the contrary. I have read about some off label uses of the diabetic drug Metformin in dealing with cancer.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[ellieas]

Hi Joe-I have tried Plaquenil several times and it always makes me sick. Now, I have just moved to the Rochester, NY area and so far have no new doctors(anybody know any here?). I am trying to eat as healthy as possible ,but have been having flares with all the moving etc. How much of the supplements do you take? How do you now the right amount? Do you only take them from natural food stores? Any advice is really appreciated.

Thanks a lot, Lesley

[paisley62]

Hydrochloroquine is plaquenil, the most commonly prescrbed "first medication given" for both Sjogren's and Lupus. 

Plaquenil does help me with joint pain.  I have been told that this medication slows the progression of the illness, but this is largely undocumented by research.  The majority of people tolerate it very well, although some people can't take it.  It is very similar to quinacrine.

I am not a doctor, however, the idea that "if you are going to have major organ involvement it will occur within the first three years" in Primary Sjogren's is not correct. With some people such as me, the longer you have Primary Sjogren's, the worse it gets - without any limit.   

I did not want to see any doctors, or take any medications when I first became ill, and didn't for the first two years.  I tried all available supplements, CoQ10, SAM-E, vitamin supplements, calcium/magnesium, cayene pepper, green tea, etc., various supplements, for months and months, and just got sicker. 

After two years, I realized that what I was doing was not working at all, and that the illness was clearly progressive.  I slowly yielded to the offered prescription medications, plaquenil and gabapentin, and immediately got some relief from pain, but not fatigue. 

In the years since then, my thinking has evolved 180 degrees - now I am hugely grateful that medications exist that can treat the symptoms of Sjogren's, and so grateful that I have some insured-access to some of these medications. 

The listed side effects of these medications are serious, however, the pain is more serious.  I have found persistent, severe, pain to be remarkably convincing in turning my mind around to seek prescription treatment for my symptoms. 

I am still interested in alternative therapies though.  I still would prefer not to take prescription medications, however, I believe this is only fantasy - I am seriously ill and must take prescription medicine now to survive with it.  I take as little medication as I can, but that turns out to be more than I would like.  I am always testing medications to see if I can reduce the dosage or eliminate them; whatever is left after that is what I take.

Finding an excellent Rheumatologist who has had numerous Sjogren's patients, and therefore knows it well, is really difficult.  In my experience, fancy credentials mean nothing.  The best way to find a great Rheumatologist is to get a recommendation from someone  - personal referral is the most direct way to find a great doctor.   Internet evaluations written by patients on doctor rating websites, of which there are many which vary by region, are my second choice of how to select a Rheumatologist.

[Joe S.]

Before taking anything, check for side effects, counter indications, and interactions. This is an important place to start as  it is best to know what you are taking. As every one is a unique individual, the dose will very. Most supplements are packaged as standard doses or multiples of standard doses.

In my typical welcome, I give what supplements I am taking. There are organizations that can help you understand the issues related to supplements like "Life extension". Some organizations publish books and magazines.

[slccom]

I strongly disagree with Joe. Look up the "nocebo effect," and you can see that by looking up potential side effects, you can actually induce them.

I suggest taking a new medication optimistically, and only if something distressing happens, then see if that is a known side effect.

Sharon

[Sleepy In Seattle]

You might also look into working with your doc and/or a nutritionist to see if eliminating certain foods from your diet can help. many of us have seen lots of improvement when we eliminate or minimize one or more of the following foods:
- gluten
- dairy
- sugar
- artificial sweeteners
- grains/carbs
- soy
- nightshade vegetables (tomatoes, potatoes, peppers, etc)

Everyone's biochemistry is a little different, and some people seem to be able to eat anything. For me, gluten and soy definitely intensify the activity of my Lupus and Sjogren's. I can have goat and sheep dairy, and small amounts of cow dairy if it's in certain forms (super-ages cheeses like Parmesan seem okay now and then), but too much makes my joints ache. My energy is MUCH better when I stick to a Paleo-type diet with very few sugars and carbs. I seem to be fine with nightshades, thank goodness.

It takes a while to do an elimination diet and then experiment with adding things back in to see what affects you and what doesn't. You kind of have to live and learn - took me over a year, and I am still learning what my limits are with various foods. But it definitely makes a HUGE difference for me. I wish it didn't - it's not easy, sometimes, eating no wheat OR dairy OR soy. Almost EVERYTHING has at least ONE of those ingredients in it! I have learned to eat super-duper healthy and it's been wonderful for my health. I wish I had done this many years ago.

Anyway - I hope all that helps. Unfortunately, I am also somebody who HAS to take drugs - Plaquenil and Methotrexate, and a low dose of prednisone. I tried to avoid it, but the Lupus is too active. I have already lost hearing in one ear to it, and I don't plan to go totally deaf or lose my kidneys, or spend my whole life in a horrible fog of fatigue and confusion (it also attacks my brain when it's flaring). The medications suck and will probably have some long-term side effects, but the road I was going down with these diseases would have ended in a miserable life and an early death - and that's not really a choice at all.

Whatever you do, I hope you are able to find relief and good health....let us know how things go!

[Dee]

Well I believe some of the meds are intended to relieve symptoms and some to slow progression, so if we can't have stop progression I will take slowing it now If I could only convince myself to take and stay on some of these meds I might not be the mess I am right now but who really knows...

Of course we need to be aware of contraindidications of these Meds and also try not get hung up on possible side effects unless we experience them.

I no longer take Plaquenil, when I did it really upset my stomach, taking it with a meal helped some. I finally managed my GERD by doing following dietary and lifestyle changes for GERD and taking a Prilosec in the morning and a Zantac at night. Now I only take a Zantac as needed.

I find the first three year comment about organ involvement interesting but hard to believe, can you post dr name, many of these top docs have websites or have authored medical articles that we can enlighten ourselves with or not as the case may be.


Dee