Introduction- 34 year old, athletic male with sjogrens

[ryanwolf]

Hello everyone, I wanted to introduce myself and see if I could get some advice.

Here is a little background on me: I am an athletic, 34-year-old male, married to my wife of 9 years and we have two little boys ages 4 and 2 years old.  I am seeking some advice on medication and just general information on sjogrens.  My wife and I really haven't dug deep into research- ignorance is bliss I suppose.  But knowledge is power, right?  So we're at the point where we have to decide if we want bliss or power. 


Here is timeline of my diagnosis:

May 2007, 30 years old-
     Started noticing symptoms for the first time ever.  Felt weakness in legs, muscle twitches all over body and unclear thought process and difficulties writing and typing.  I first noticed these symptoms while sitting still at my desk at work and also while doing yard work outside.  Also experienced anxiety and panic attacks.

Symptoms persisted off and on for several years.  I saw numerous doctors, had MRI's, xrays, blood tests, exams, EKG, spinal taps, etc.  Was never given an accurate diagnosis.


August 2010- 33 years old-
     I started exercising on a very regular basis.  I find it helps my physical pain and also mental health.  I train regularly and compete in duathlons. 


November 2010- 33 years old-
     I had peripheral vision loss/blurring of vision.  I was *finally* able to get an INACCURATE "probably" diagnosis from my neurologist of multiple sclerosis.  I applied to a research hospital in my city and was able to get an appointment with an MS specialist in February, a 3 months wait.


February 2011- 33 years old-
     After many more tests, the MS specialist informed me I did NOT have MS, and referred me to a rheumatologist.  I was finally given the diagnosis of Sjogrens.  I started taking the minimum amounts of medication: metroprolol (25 mg) and hydroxychloroquine (200mg) and Ibuprofen-- when needed-- (600mg) plus the occasional xanax for anxiety.  I also continue to train and exercise on a regular basis- with my doctor's approval.  Dry eyes/dry mouth are my smallest concern- the muscle spasticity is the biggest issue for me.


February 2012- 34 years old-
     I feel as though I have been having a "flare up" the past week or so.  Lots of muscle spasticity: tremors mostly in my arms, muscle weakness, spasms in legs some in arms.  Lots of anxiety about it.  I had to use eye drops today- for the first time in months. 



I have an appointment coming up with my Rheumatologist and I have been considering trying out Methotrexate.  I wonder if it will help PREVENT deterioration of my body or if it will just help bandaid the symptoms I have.  I don't take the decision to start this medication lightly.  I like using as little medication as possible to feel better and prefer more natural ways to cope.  I recognize this is a drug with some scary side effects.  I enjoy drinking wine with my wife in the evenings and I know that is something I'd have to give up.  I worry a lot about providing for my family and living a good quality life and watching my boys grow up.  Is most everyone out there with sjogrens on this medication?  Where can I get more information?  Any advice or recommendations would be great!


Thank you for reading my long post!
     

[lea78]

Hi welcome to the forum.

I am also 34 and had strange symptoms for few years. I also have the all over muscle twitches probably the first symptom that worried me, though no longer worry about this. I now have painful salivary glands, dry eyes, blurry vision, muscle aches. I also suffer with anxiety, have done for few years.

I am not on any medication for sjogrens apart from eye drops so I can't really help you with that, but I am sure a lot of people on here have advice.

Leanne

[A66eyroad]

I don't have advice, being an older woman whose Sjogren's manifests with chronic fatigue, headaches and earaches.

But I do want to welcome you to the forum!

I've found the search engine at the top corner of the main page to be one of the most useful things since the blender!    If you don't find what you're looking for, feel free to post away! No question is too big or too small!   

And if you see that someone else on the forum has a question you might be able to comment on, jump on in and help!

Glad you found us, sorry you had to look.

~Abbey

[meow]

Ryanwolf,
The side effects from methtrexate vary among individuals. You may not experience many at all.

I asked my doc about that essential glass of wine, and I was told that with oral MTX having an occasional drink, like one or two a week, is ok.

If you are doing the IV or IM injections, that is at a much higher level, and you should have absolutely no alcohol.

[mshistory]

Hi and welcome! Perhaps before trying MTX you could try upping your dose of Plaquenil to see if it helps? I started out on 400 mg of Plaquenil from day one. That being said...it has helped with the joint swelling in my fingers, but nothing else it seems. I am physically and mentally exhausted all the time, still have joint pain, can't gain weight, developed asthma which can get pretty bad at times, and there's a long list of symptoms I still have even with the Plaquenil...and I'm 32.

Good luck w/whatever treatment plan you and your rheumy decide on!

[cargillwitch]

ryanwolf- I had identical symptoms and also am an avid runner and hiker ( did a 100km race last summer).
the muscle twitches and anxiety were what led me to seek out help initially although 3 years prior I had experienced a rough patch of intestinal health that looking back were probably autoimmune.
I have opted to this point to not take any standard meds prescribed( talk to me in 5 or six years perhaps I will have made a different decision!). what I found has helped me immensely for the muscle twitching is magnesium( have you had these checked in blood work? I would suggest it) As an athlete you would need more than the average person and those of us with sjogrens tend to not always absorb nutrients well.  A deficiency can also make muscle weakness more pronounced and anxiety attacks worse.
I also take a supplement called adrenergyn to help the adrenals deal with all the anxiety- it has been VERY helpful.
I am so glad you found us! I am interested as I have wondered how others who are very physically active do with sjogrens. I have cut back training ( winter and fatigue) but still am out at least 5 days a week. It really helps me to BE active but i know everyone is different

[Joe S.]

Welcome ryanwolf, to the forum

While I am glad that you found us, I do not like it than 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.

Sjogren's – 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.

1. Don't 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 Sjogren's 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.

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.

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.

[Jellyb]

Hi Ryan,
Welcome to the forum!
I am a pretty active person, I work out 7 days a week, lift weights elliptical trainer, and or walk 5 miles a day, depending on my schedule. Exercise helps me wuth my brain fog and keeps my muscles and joints from getting stiff.

I am on a low dose of plaquenil, which has helped, but I have had good results with taking magnesium like Cargillwitch. It has really helped the muscl twitches and tics. Also I take tumeric, which has been amazing help with joint pain and swelling. And I am also gluten free now.

[ryanwolf]

Thank you everyone for the great responses.  I am actually taking 400mg of Plaquenil already (200mg twice a day).  I am now planning to ask my doctor if we cna up that dose before I jump straight to MTX.  Also, I really appreciate the Magnesium and tumeric suggestions.  Thank you!  I failed to mention that I also take multi-vitamin, CoQ10, Fish Oil, and D3.  I've been taking these supplements for over a year.

[topping21]

Welcome Ryan.  We have alot in common.  I too am just going to turn 34 years old with 4 children and a wife.

I can tell you my life is more balanced and I do appreciate more things than I did before.  One thing I have learned is to just take this syndrome day by day.
This site has been a huge help for me and the people on here are amazing.

Jeremy

[Pisces24]

I want to applaud you for being proactive about your health!  For asking questions if the doctors and seeking information. Not just going to the dr and saying "yes dr, of course dr, anything you say dr". 

We've here gone through so many drs and gotten so many diff diagnoses, that our opinion has taken a decidedly different turn that what it was in the past.

I feel for you getting hit with this stuff at a younger age but glad you are positive and taking a proactive approach.

[purplegirl]

Hi there

I came across this post today, and was wondering if you ever decided to take Methotrexate or if increasing the plaquanil worked for you?

I am also experiencing the joint and muscle pain, spasms, stiffness etc and have not been able to gym for 3 weeks now.

The rheum has decided to increase my plaquanil for a month and if this doesnt work i may have to try Methotrexate ( i really dont want to) I am also 34 years old.

I hope this finds you well and pain free.

[A66eyroad]

Hi, 'Girl!

My rheumy has told me in the past that 400 mg of Plaquenil is the highest dosage he can prescribe. I've never questioned him so I don't know why.

It took about six months or so on Plequenil for me to be able to tell a difference in how I felt.  How long have you been on it?

[Dolly Dimples]

 Sorry to butt in on this thread, but I keep seeing people recommending, or the taking of Tumeic,
Can I please ask how would one take this stuff and how often.   Have I to start eating lots of curries?
                               Thanks Dolly

[Ark mom]

Hello, welcome to the family!  Sorry that you are going through this! 

I was diagnosed in April of this year and have been on plaquenil for 7 months.  About three weeks ago we started on methotrexate.  I, too, have had many CNS symptoms that initially drove my neurologist to diagnose MS, even without a shred of objective evidence.  Well, I guess my rheumy is doing the same thing on his end with Sjogrens, LOL! 

I was scared of methotrexate, especially the lung disease, but I keep having lots of flare ups, not as bad as in the past though.  Also, my joint pain is still too bothersome. 

I hope you find something that works--then pass the idea onto us!  Take care.