After the Flare: Now what?

[HL in NY]

So, I started my first significant flare back at the tail end of January. By February, I went from able-bodied to huddled on the couch in a lump of pain. The last three months have been a whirlwind of tests, a diagnosis, and quite an education.

At the end of March I started on the Pred blast: 20 mgs for a week, then 15 mgs, now 10, next week 5. That stopped the (literally) crippling joint pain from getting worse, and started the reversal. Now I have a good 'ole chest cold, and I've not needed to take pain killers (celebrex) for the first time in months. I never thought I'd have praise for a chest cold, but my wondering lymphocytes have now found a true enemy to attack and they're leaving my body alone.

But this sudden pain has left me as suspicious as a sailor.  Is it coming back? Do I still need to have treatment? Where do I go from here? What should I expect? What should I do to keep it from coming back?

I know you're all not doctors, but you've been down this road, and I'd love some advice.

Heather

[Scottietottie]

Hi Heather 

Wow! I wish I had a crystal ball! Flares are totally unpredictable (except we are even more likely to have one after a period of stress) Some people flare frequently and others don't. Flares can last a short time or a long time. Again its an individual thing. I had about 10 years of remission which was wonderful! So that can happen too.

I wish I could be more helpful but I really can't. make the most of all the days you're not flaring and don't stress out wondering what's round the corner! It may not be!

Take care - Scottie 

[Mari]

Scottie,

i HAVE A QUESTION 4 U.
I hope u get to view this. Sjogens world's Forums have seem to have changed. I used to be able to search under topics     but now everything is somewhat connected. I am very confused and not sure how 2 sure for topics.

But Anyways,

U say that u had 10 years of remission. How did that happen? Did u all of the sudden have tears again? Saliva? Were u dry at all? I was recently diagnosed and still trying to control my so called "Flare". I am excited that although everybody is differant the possibility of remission is there. That brings me hope!

Mari

[Scottietottie]

Hi Mari 

It takes a while to everything on the boards being under one heading. It means no one can post in the wrong place any more! The search option will still take you to posts about particular subjects.

I had other symptoms before I had the dryness. I used to get intermittent tremors, extreme fatigue, sore patches of skin (no rash - but felt like a scald healing) numb toes and one leg dragged a bit. That's what I got remission from. I think I probably had poor quality saliva too because my teeth have always been terrible. My dental hygiene was OK and I never missed a dental appointment and yet my mouth was a disaster area. My siblings teeth were OK and I know I brushed and flossed more than my kids did - and their teeth are really good.

The dryness came along with menopause in my case. The neuro symptoms aren't as bad as they were so far. Joint and muscle pain have returned. I got a 'rest' from them too.

I've found that taking 3000mg of fishoil daily has helped my eyes.

Take care - Scottie 

[Mari]

Scottie,

Thanks for your response. I am kind of getting used to the boards by now. I am convinced i have had sjogrens for many years with very mild symptoms, so mild that i didn't really think it was a big deal. I always had dental problems although i constantly flossed and brushed, eye twitching specially on my left eye which seems to be worse than the right, and carpal tunnel symptoms that would disappear for years. I also remember not having symptoms in between for years. Maybe i was in Remission. i wish it would all go away. Wishfull thinking hah!!

Heather,

I wish you well soon. This disease is like a rollercoaster. We have good days and bad days. I also wish i had a crystal ball. In my case i am learning to take advantage of the good days since I don't know what 2-morrow will hold for me.

Take care,

Mari

[cinmac]

Hi Heather,

After my first big flare that lasted about 18 months, I had almost 10 years of kind of a low grade but definitely easier to live with illness.  My eyes were dry but controllable with plugs and drops.  My mouth was cottony and I had to really watch dental hygiene, but I avoided mouth sores etc.  I took salagen occasionally and always have sugarless gum or something with me.

I usually feel tired and try to alternate busy days with slow ones and make most appts in the afternoon so I can sleep in.  I went out on disability because I cannot predict reliably how I will feel from day to day, but I am not miserable and I have found ways to do most of what I want to do-although not always on my time schedule!  I am in a flare now and on 40 mg of steroids and my doubt is the same as yours.  Will it go away again?  What is going to happen?  And the sad truth is no one knows.

Every person reacts to this illness differently.  Some have few if any flares and some are very chronically ill.  I think many of us fall somewhere in between.  It is so hard, but if u listen to every horror story u will drive yourself crazy.  My worst fears about Sjogren's have not materialized in my own life, and I pray they won't in yours either.  Your life will be different than you planned, and at times it will be a perfect pain in the you know where, but my guess would be that you will find a way to cope and that you will wll go on to have more of a life than you might expect right now coming off your miserable couch huddle (been there,done that-NO FUN AT ALL).  Good luck to you.

[HL in NY]

Thanks for all the good thoughts.

I struggle with every day asking myself if the pain is coming back. My hands and feet are okay, but my knees and elbows are sore- is that the Sjs or just the cold I'm fighting? I saw my GP on Tuesday and she put me on a Z-pack for the cold, since my lungs were a little noisy and I'm on the Pred.

In the meantime I'm teaching myself to knit, which is an excellent distraction and fairly optimistic on my part. I guess my biggest question is what will I be like once I'm off the Pred? I know no one can really predict that, and truthfully, I'll find out soon enough. But I hate this limbo feeling. I feel like I can't make too many plans for the summer because I just don't know how I'll be. Frustrating.

Again, thanks for letting me vent and for all the opinions. It's helpful, even though I know no one has the answers.

Heather