(newbie) 28 years old and just diagnosed with SJS

[jacob87]

Hello friends,

I am new to this forum, I so happy I found such an amazing community!!
I'm 28 years old and about 2 months ago I was diagnosed with Sjogrens. Suddenly, all my symptoms got a name and looks like I just started a new chapter in my life... So far it looks like I am hitting a major onset of symptoms; fatigue was with me for years, but now I am having a lot of inflammation, muscle pain, trouble sleeping, dry and swollen throat, huge brain fog and cognitive impairment. I just managed to get work accommodations to save my job which otherwise I would have lost with my productivity being cut by 50-75%....

After doing lots of research, I started feeling almost like being too young for Sjogren's... I read that average age at diagnosis is in 50s. Also now being able to connect some dots together, I believe my early autoimmune symptoms actually started almost 10 years ago (Reynaud's and chronic fatigue).
I am wondering how much it impacts the disease prognosis compared to people diagnosed later in life.

Are on this forum any other people around my age or who got diagnosed at young age?
I'd love to get in touch, hear your story and learn how you manage to keep your life together, career, relationships etc. despite all the symptoms and struggle with health.
Feel free to PM me if you are open to exchange some emails/phone calls etc.

J.

[Joe S.]

Welcome. There are several yonger than you and many over the years. I hope you can manage your symptoms soon. It does take some time tolearn what works for you.

[Kathy57]

Welcome!

I know there are many who are younger and more who are my age and older.  (I'm 57).  Some are in their 40's and 30's.   I'm sure you will get many responses.

Meanwhile, I'm sorry you had to find us, but I think you will be glad that you did.

The good news now is that you can start some good treatment.  Hoping you feel better and soon!

Kathy

[susanep]

Welcome,

I am glad you found us, and we can all share in helping one another. I think it's good you found out earlier than some of us.

susanep

[Nymph]

Hi Jacob,

I am 36, but my symptoms started before I was 30. There is a FB group called Under 40 with Sjogren's that has over 200 people. I'm in a rush this morning but feel free to PM me. And welcome! That's great that you got accomodations at work.

Best,

Nicole

[irish]

Welcome. I am 72 years old now and got diagnosed with Sjogrens in 2003 and with Myasthenia gravis, Hashimotos and severely low t-cells in 2006. I had been "under the weather" since I was about 21 years old.

Many different ailments-aching, pain, fatigue, insomnia, you name it- for years and treated like it was all in my head. My third pregnancy at age 29 was terrible because I was so ill. After being diagnosed with Sjogrens I could look back and see that all this stuff was related to autoimmune disease. Funny thing, years ago I had told the docs that I thought I had some autoimmune disease and they just ignored me. Doctors should listen to their patients. Now that a new concept. Good luck. Irish

[finallyadx]

Welcome to the board - I too feel you will pleased you found this group...kind, supportive and informative.

I believe there are younger, same age or close as you and then older as well. 

I hope you are able to come up with a treatment plan that will help to ease or manage the symptoms you are having.

For me, it has been a mix of supplements, plaquenil and evoxac.

Keep us posted.

Sending positive thoughts your way.

Kim

[Scottietottie]

Hi Jacob 

Welcome to Sjogren's World. You ARE young for a diagnoses but many people in here were ill for years before they got one. We used to have a nine year old in here with one and also the mother of a diagnosed four year old - so it seems to be able to strike at any age.

Anyway - I'm glad you have found us. I hope you find the site useful. The members are friendly, supportive and helpful.

Take care - Scottie 

[kc2015]

hi, I' Kim. I was diagnosed at age 25, I am now 33. Feel free to pm me.

[Carolina]

Well, the 'average Sjogren's patient is 40-50, female, and took 4-7 years to get a diagnosis, after seriously seeking answers.

So much for average!

Jacob there is nothing much average about Immune System Disorders.  Many of us can trace our problems back a long way.  In my case from birth. 

The best thing is that medical science has progressed to the point that you were diagnosed even tho' you don't fit the average profile.

In fact, I would say that often all too often a person presenting with exactly the same symptoms you described, would be dismissed as neurotic if the patient were a women of 40-50 years of age!  "Go home, and 'get over yourself' is often the 'diagnosis'."

The next point to keep in mind is that there is no 'average' way Sjogren's people handle their condition or 'progress'/'don't progress'.

That's why we do the following:  1. Keep breathing.  2. Keep good records of our physical, emotional and spiritual condition, on a daily basis, and 3.  Practice patience, persistence and acceptance.   i would say, Jacob, that you are very good at all three already.

I hope you find a peer group for support.  We are all here if any questions come up.

Hugs,  Elaine

[grammad97]

Hello and welcome Jacob.
I have seen young people on the site and both male and female sjoggies so I am sure when folks are online they will say hello.

I started with health problems in my teens but really didn't start having constant symptoms until in my 40's. I didn't get diagnosed until 53 with MCTD and sjogrens in 2013.
I think being proactive in taking care of your health and treating your symptoms is smart.
Have you been to the "But you don't look sick" site? It's got a great message called "the spoon theory" which is helpful in letting people understand dealing with autoimmunes.

[jacob87]

Thank you so much for all your responses!

I started reading the forum every day now to catch up and learn more. I guess the best I can do at this point (other than treatment) is to educate myself. And hopefully soon I will be able to share some useful knowledge with others...

So far my first (and only) treatment was prednisone from my PCP. My rheumy (the one who diagnoses SJS) put me on supplements (especially vit D) and wanted to wait how I am doing for the next 3 mo on better diet and supplements, but my health started deteriorating really quickly with big impact on my job and daily life... Without my job I obviously wouldn't be able to afford any treatment at all; so I became really desperate for treatment.

They put me on burst and taper (60mg to 0 in 2 weeks). First two days were horrible, next 2-3 days were AMAZING. I actually had energy, no pain and even my mood got better.
Then when I started tapering, inflammation and fatigue came back really quickly. I was surprised I can change so quickly - first sudden improvement, then sudden relapse.

My PCP is thinking about putting me back on 60mg, but I am a little scared about the side effects (list of side effects for prednisone is really long and scary...). I guess it's a tough choice between terrible symptoms vs terrible side effects....

I'm hoping I will find some other treatment option...
I read so many promising things about metothrexrate, plaquenil etc...

I will try to stay optimistic

[Carolina]

Jacob, you are right, you are far too young to be on a large dose of prednisone regularly.

Even a small dose at your age would be questionable.

But the burst of prednisone proved one thing....your 'misery' is due to inflammation.

You need to get to the best Rheumatologist possible, preferably at a University Medical Center.

Hugs,  Elaine

[Kathy57]

I agree with Elaine.  You need to be treated with Plaquinil for your awful fatigue (or something else). First line treatment is Plaquinil.  I can't imagine why your Rheumatoligist has not ordered it for you. 

You need other things, as well.  Supplements are not goIng to cut it!  You need real treatment.  Can you get this from your current rheumatologist?  If not, then you need to get a second opinion ASAP.  I agree with Elaine that a University or teaching hospital is a good place to start.

I have been where you are - fearful of losing my job.  Unfortunately, Before  I was diagnosed, I did get so sick that I had to quit.  I haven't worked since.  Long boring story.  I don't want this to happen to you. 

You can ask for a medical LOA if you need it.  I asked for one twice but was refused because my GP had no clue what was going on and I guess she just didn't think I was sick.

You have a diagnosis, thank God, and you are entitled to getting a leave if you need it.  That will protect your job.

Most importantly you need correct treatment.  Sometimes it takes awhile for that trearment to "kick in", and that is where a medical LOA may come in handy. 

Please let us know how you are doing.

Kathy

[PattyAnn]

Hi,
I was 26 year old when I was diagnosed after the birth of my 2nd son. I am now  44years old.

Everyone seems to have different experiences with this illness. But one thing that seems most agree with (not all) is that they have found Plaquinil to be very helpful 

I have had lot of good healthy times since my diagnoses 18 years ago. I have learned that for me stress will knock me down big time, It causes me the worst anxiety and send me into major depression. My Father passed away after a sudden illness, my Dr. wanted to put me on med for depression, But i refused but with in 2 month I was so miserable, with pain and so fatigued all I wanted to do was sleep, I finally agreed to take the med, and within a couple of weeks I was much better, yes I still have bad day, but overall it gave me my life back.

I was diagnosed young like you, and had a third child after that, and I have done a lot of fun thing throughout the years, You will learn what works for you, try to pay attention to what is going on in your life when you are having bad times, so you can learn what might bring them on,if you are tired one day try to rest as much as you can, if you push your self too much, the next couple of days can be worse, so take care.