Hello, I'm back after a long vacation

[Skylar]

I used to post here a few years ago after I was first diagnosed with Sjogren's but I completely changed my diet two years ago and all my symptoms disappeared except dryness in one eye for which I kept using Restatsis. I never felt better in my life which is why I'm so disappointed that I had a flare up of some of my symptoms and I'm back on Plaquenil and will be seeing my Rheumatologist in two weeks. I'm not looking forward to that endless round of visiting the doctor, blood drawn for tests etc. and well, you all know, learning to live with all the crazy problems. Anyhow, I've got that awful dry mouth with my tongue so sore from touching my teeth, the eyes are so dry again, nose bleeds again from dryness - everything is dry. But I know it's affecting my brain - the anxiety and depression has come back for no apparent reason and I'm having muscle pains and problems again.

I'm hopeful that I've caught things early and that getting back on Plaquenil will enable me to go back to feeling normal and stop me from deteriorating to the point I was before the diet change.

I think this flare up is due to the fact that I had massive surgery a couple of months ago and while I was healing fantastically, I slowly started to notice changes that started to add up to OMG, it's back again. Has anyone else had a flare up after surgery when you've been doing well?

Has anyone had basically all their symptoms go into remission for a long period, only to have them flare up - did they stay mild or get worse?

I will take some time to read through the posts - I see some names that I remember as well as lots of new names. This site was so helpful the first time round - I discovered Biotene products when my dentist had never heard of them etc. so I know I'll find new and helpful info here too. Thanks everyone.

[Joe S.]

I am sorry to welcome you back skylar. I am glad that you found relief in diet. Some of us have posted what we are taking in our signatures. I use alternative therapies to help with this disease.

[Skylar]

Hi Joe, at this point in time I'm just taking Plaquenil and B12. I'm sad that I'm back - I was more normal than I have been for so many years and I hope I can get back there quickly. I'm lucky that my Rheumatologist is receptive to me having taken a break from my medication.

[Joe S.]

You may want to try to add Alpha or R Lipoic acid and Acetyl L Carnitine. D3 and Omega 3 can also be useful.

[Skylar]

Thanks Joe, but I'm into whole foods and not into taking lots of supplements.

[Carolina]

Welcome Skylar,

I hope you can get back to 'normal' again.   It may take some time.   

The surgery probably triggered a lot of things.

And time marches on, and on, and on...........

Keep us posted on your progress.

Hugs

Elaine

[Skylar]

Hi Elaine,  I don't know why I didn't even consider that surgery could cause a flare - but here I am. Thanks for the welcome.

[Rose G]

Skyler,

I am rather new here and ha d a story close to yours.  I was dx'd 3 years ago and was very sick for 8 months.  Could not take plaq and pred and was just really awful with also having gastroparesis.  Lost a lot of weight and didn't know what I was going to do.  Then, slowly I was able to eat and just started feeling better.  Dry mouth, eyes all the weird feelings I had got better.  Not perfect, but I was able to function and enjoy life.  I had lost my job and couldn't get it back but felt I could maybe work if I could find a job, but I didn't.  I did not start any special diet, was not on any meds except Lyrica at night only and really don't know why I sort of went into "remission".  Sometimes I would get a few issues back, but never bad.

So for about 2 years things went a lot better.....then around November, slowly things came creeping back with all symptoms back and feeling really awful in January.  I also went back to my rheumy after not being there for over 2 years.  Again she prescibed pred and plaq.  The pred did nothing and I tried to take the plaq actully taking it for 7 weeks.  But right away I got blurry vision after each pill.  I finally read that this is really bad and your should stop it.  I did, called rheumy and she said yes, don't take it.  Now I am on no meds and feel awful and don't know what to do.  I am trying some vitamins and naproxen but they are really not helping.  So I am wondering if it was not the diet that helped you, but it just got better on it's own somehow like I did and then it came back like mine did.  And this time things are worse. I have more symptoms then before like really bad ringing in my ears, my tongue burns all the time, bottom lip hurts and is lumpy in addition to all the other things.  I am hoping (as is my hubby and family) that it gets somewhat better again, like it did before.  I hope that for you too.  But I am sure and try to tell my family that just because that happened before, does not mean it will again!  You are the first one I have come across that had a similar experience to me.  Let us know how it goes.  Rose

[Skylar]

Hi Rose, you're absolutely right, I could have just gone into remission but I also stopped having asthma and allergies that I've had since I was a kid and my osteoarthritis (OA) that I've had since I was a teenager (I still have the OA damage to my joints, just no pain and no swelling) - I was off all medications, not just the ones for Sjogren's. I hope the asthma, allergies and OA don't return too especially because the allergy meds were so drying adding to my problems. So far the allergies/asthma and OA are still in "remission" along with things like fibromyalgia.

I'm sorry that you have had a hard time after your remission and you're post has scared me because I'm hoping that I'm on top of this and getting Plaquenil early enough to stop any progress - clearly time will tell. I really, really, really don't want to be as sick as I was - I could barely move due to myositis and neurological problems and the dryness was driving me mad. But I understand that, like you I just may be lucky for a short time and if that is the case, then I am grateful for that time. Do you think that due to your gastroparesis that you too changed your diet but slowly went back to your old diet once you felt better?

It's a good thing you noticed the problems with your eyes and stopped the Plaquenil but sad that you haven't found any effective replacement. I hope that we both get better.

[Rose G]

Skylar,  Sorry to scare you, just wanted to relate my story because like I said you are the first one I have seen with a hx somewhat like mine.  The only way my diet was changed is that I couldn't eat and lost so much weight I was on Ensure and Carnation instant breakfast for a while.  Then, all the good things you are told to eat, I could not eat with my issues.  No raw veggies, no fiber etc because they are too hard to digest with gastroparesis.  Then I ate soft food, like toast, eggs, soup, etc.  Eventually (after 8 months) I was able to eat and went back to old habits and gained the 50+ lbs I had lost (over a 2 year period).

Last night on my own, I decided to try the plaqunil by cutting the 200 mg pills in half and just take 2 of those a day (some thought you should start with a lower dose, I was told to take 2 a day of the 200) and see if it makes a difference.  So far I only took it last night and I did not get blurry vision.  I did not really think it was doing anything for me.  I took it for 7 weeks.  But when everyone on here seems to think it not only helps many symptoms, but helps stop the progression, it really makes me want to take it....so I am trying.  And even though I did not have much joint pain before I took it, I swear I have a lot now, after stopping it.  I will tell my rheumy I did this if it works.  If not I will just stop it again.  I saw the eye dr at about 2 weeks and he said all was ok.  Very odd.  But I do know I was not taking it the last time when things just got better.  I don't know, don't really understand.  When most people (and my rheumy) talk about good days and flares, they talk about it in days or weeks....not in years, like I (and you) have experienced.

I am going to DisneyWorld tomorrow with 2 of my kids and 3 of my 4 grandchildren.  I am hoping I can make it through the hot days and long lines, standing etc.  I have not done anything like this while ill.  That is one reason I am trying the plaq again, hoping it will help with pains while away, but I know it makes you more sun sensitive, oh well, take care and let us know how things go for you.

[Rose G]

Me again Skylar,

Sorry I forgot to say this, about 2 months after I started feeling better (2 years ago) I had a hysterectomy and I healed fine and did not get serious SS symptoms again.  Not saying it didn't cause your issues, just saying it didn't me.

I had no rhyme or reason for it starting the first time, or for it coming back so bad again this time.  No major stress, no illness, no anything I can think of...I have no clue.  Wish I did, because if I knew and could avoid it, I surely would.  And if I knew how to kick it out, I would.  But I and docs don't have a clue!

[Skylar]

Me again Skylar,

Sorry I forgot to say this, about 2 months after I started feeling better (2 years ago) I had a hysterectomy and I healed fine and did not get serious SS symptoms again.  Not saying it didn't cause your issues, just saying it didn't me.

I had no rhyme or reason for it starting the first time, or for it coming back so bad again this time.  No major stress, no illness, no anything I can think of...I have no clue.  Wish I did, because if I knew and could avoid it, I surely would.  And if I knew how to kick it out, I would.  But I and docs don't have a clue!

Hi Rose, yes, if anyone knew how to stop or avoid it, imagine all the suffering that we would be saved from.

I'm glad that you related your story - and maybe then there are others who have had remissions? Wouldn't it be interesting if there was something in common that we did? But I'm eating high fiber, lots of veggies and fruit - so very different from your diet. Well I'm happy to have had whatever I had. And a hysterectomy is definitely a major operation - and it didn't cause a flare for you, interesting. There is a lot that they don't know...unfortunately.

I hope you have a good time in Disney World and enjoy your family.