New here, with questions

[calimar]

Hi all!  This is my first post here. I was diagnosed in February with Rheumatoid Arthritis.  I'm seeing a PA in the rheumatology department He's been there 20 years and seems very knowledgable, and is also very kind and thoughtful, but seems a little conservative in treatment.  I'm considering seeing a Rheumatologist for a different perspective.  My blood work (RF and ANA) has been lowly positive, but I've tested negative for everything else.  I'm on a low dose of methotrexate.  I've been having a lot of problems with dry eyes and mouth sores, the PA says I'm probably developing Sjogren's and prescribed pilocarpine and OTC eye drops.  The eye Dr. said my eyes are severely dry, but not to take the Pilocarpine unless I absolutely have to because it causes changes with focus.  So I'm taking just the drops with little improvement.   While I have painful joints, they are not all that painful, not compared to what I read about.  RA sounds quite debilitating.  I still exercise, run, weight train regularly with no ill effects.  My "pain" is more of an annoyance than something that gets in the way of daily activities.  I've asked the PA if this could be something else, Sjogren's maybe, without the RA, or another auto immune disorder.  He says it doesn't really matter what I have, as long as I'm treated and feeling better since all the treatment is basically the same.  SO my question is this, especially those of you with multiple AI diseases: Does your Dr. feel the same way?  That it isn't important to differentiate between disorders?  It seems like different areas of the body might need to be monitored depending on the illness.  The unknown leaves me very uncomfortable.  Thanks for any insight you may have.

[Carolina]

Hi Calimar,

Welcome!   Your questions are interesting.

The changes to the eye brought about by pilocarpine include miosis, which is a constricting of the pupil. 

It's interesting because a neurologist noted that constriction about my pupils 18 months ago, but didn't connect it to the pilocarpine, which I've taken for about 9 years.

I know that I have had changes in my eyes, in addition to the constriction of my pupils.  But I MUST take pilocarpine for without it my mouth would be unbearably dry.   

For most of us there is a trade off in what we take for our various conditions, and the side effects that are possible.

However, most of life is like this, calimar.  But that is just my humble opinion!

There is another drug to increase saliva called Evoxac, but it seems to have the same effects on the eyes.

I think you might want a second opinion from another Rheumatologist, as you are just starting out with RA.

You will get good advice here.  I don't have RA, or any identified Auto Immune condition.   Just a bundle of weird 'things'.   And I manage most of the symptoms and discomforts.

Keep us posted on what you are doing.   And add some information about your condition and medications to your signature line.

Hugs

Elaine

[Scottietottie]

Hello Calimar 

Welcome to Sjogren's world. Personally I think that seeing a rheumatologist would be a good idea but there are good ones and bad ones out there! Good luck finding a good one. Autoimmune conditions are tricky because symptoms overlap. They can't be neatly compartmentalised.

I'm also afraid that autoimmune conditions leave us living with the 'unknown'. They are unpredictable. Some people get really ill and others are uncomfortable but are able to get on with their lives. Sjogren's is meant to be slowly progressive. With some it hardly progresses at all and with others it seems to overwhelm them rapidly but one can't predict who it will happen to and there is no use wasting precious time worrying about things that may never happen.

I agree with Elaine about medications often being a 'trade off'. The trick is to keep feeling as well as one can for as long as one can!

Take care - Scottie 

[Rachel F.]

If I were you I would feel the same way and want to see a rheumatologist too. When I saw a rheumatologist he said it was very difficult to diagnose "connective tissue diseases" and at least told me up front it would take a few years. So, it was nice that there was some admission of that. My bloodwork has always been clear. So, if your bloodwork is showing something then you may be closer to a diagnosis. I think, from what others have posted, it sounds that it is also important to begin treatment. So in that way I think you have been fortunate to find someone who will treat you although there isn't a real formal diagnosis. Don't feel bad about getting a second opinion, though.
Rachel F.

[Joe S.]

Welcome calimar  to the forum. I have had to turn to alternative therapies because of negative reactions to typical therapies. Am I doing better or worse? It is hard for me to tell since my only contact with other that have Sjogren's is on this forum.

Once you have one AI disease it seems to invite its friends and then you have several AI diseases. D3, Omega 3, B12, Alpha or R lipoic Acid, and Acetyl L carnitine seem to slow the progress of AI diseases and clear the fog. Six to eight ounces of carrot Juice, High-actives, Tart Cherry extract, and reflexology seem to help with most pain issues.

I am using electo-herbalism to deal with most infections. With our compromised immune systems, we often do not show the infection in our blood work until it is life threatening. The tones can also help with digestive issues. While they do not address Sjogren's directly, they do address the symptoms. One key was adding the tone for testosterone. 1445 for women and 1444 for men.

Management is the key to doing well. "Spoon Theory" helps you to understand the ups and downs of AI diseases. Cognitive Behavior Therapy (CBT) will help you manage Anxiety and depression that often comes with these diseases.

Meditation and breathing exercises help with coping, migraines, sleep issues, and pain management.

The key to a successful support group is, "Helping you, helps me". I believe that this forum is a successful support group for all of us in semi isolation

Personally I have to hide from the sun.