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It's official! I would dance if I could...

Started by sarahjane, April 02, 2013, 08:14:38 AM

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sarahjane

April 02, 2013, 08:14:38 AM
Two and a half years after starting this journey-and being completely sero negative- my rheumy today has started me on 200mg hydroxychloroquine. He has admitted he can no longer ignore the damage being done to my body and has formally declared me as having SjS with extra-glandular involvement.

I'm so happy and I know you all get why....

It's been a long road and without this forum to provide information and support I'd be lost

Just taken my first pill and will see how I get on  :)

sjogren's syndrome, psoriatic arthritis, fibromyalgia, hashimoto's, erythema nodosum, saphenous nerve neuropathy, myositis, cervical spondylosis ,TMJ, Loinpain Haematuria Syndrome, hepatic cysts
Hydroxychloroquine, MTX, folic acid, Pregabalin,Amitriptyline, Vit. D, co-dydromol,levothyroxine

jpd54

#1
April 02, 2013, 08:37:19 AM
I have always said I could handle anything as long as I know what it is.  It's the not knowing that drives you crazy. 

Congratulations!!!  We will all be here for you.

                       jpd
SJS, Fibro, Osteoarthritis, Osteoporosis, GERD, Rosacea, TMJ

Celebrex, Gabapentin, Lasix, Potassium,Hydroxychloroquine, Lexapro, Lisinopril / Hydrochlorothiazide, Linzess, Metoclopram, Nexium, Oracea, Savella, Simvastatin, Vitamin D, Voltaren

Karen13

#2
April 02, 2013, 09:25:02 AM
Good luck with the new treatment. It took me 3 months to feel the effects of hydroxychloroquine and a few more to feel the full effects. It has made a huge difference and given me some of my old self back, I wish the same for you!

Bucky

#3
April 02, 2013, 10:42:27 AM
sarahjane - what a huge relief for you to "officially" have a diagnose!

I read story after story on this forum of members who are sero-negative and the struggles they have getting doctors to believe their symptoms really do exist and it's not all in their head.  That would be so hard.

Perhaps you have read on here before, that it is suggested you take food with your pills - it helps with the upset stomach.  Some take their pills with yogurt.  I found for myself, that I can't take milk with my Plaquenil or it gives me horrible gassiness.  If I take the pills without milk, no problem. 

Also, it can take up to six months for you to begin to feel the benefits of Plaquenil - for some, this time is shorter.

Have you seen an Ophthalmologist for your eyes?  They usually suggest that someone starting Plaquenil get a baseline exam done to make sure the medicine doesn't affect your eyes.  I've been taking Plaquenil for almost five years and I see the Optho every six months.

Best wishes to you . . .

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

A66eyroad

#4
April 02, 2013, 11:02:18 AM
Like Karen, the Plaquenil changed my life --- so congratulations!  It did take a good three months to feel a difference and fully six months to be sort of normal. I've been on it for three years and my life is pretty great now!  I still can only do one "big" thing a day, and I spend lots of time napping on weekends, but I do work full time and a month ago I started working out at a gym five days a week!

Plaquenil gives me a tummy ache unless I take it with food, so I take both pills at once (I take 400 mg per day) with my largest meal of the day, which is supper.  I take it with a bite of food to make sure it goes all the way down. If I'm eating a light supper I will add a short glass of milk.

My rheumy asks that I get a "visual field" exam by my optometrist once a year. I had to have the first one as a baseline within a month of starting the medicine. Did your doctor ask for that also?

I'm so excited for you and I can't wait to hear how wonderful your life will get!   :D
Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

Skylar

#5
April 02, 2013, 01:27:35 PM
What a relief - nothing like finally getting a diagnosis and some treatment. It's sad that there aren't better diagnostic tools to identify Sjogren's early.

Cassi307

#6
April 02, 2013, 01:29:13 PM
That is so true. I developed kidney disease for some unknown reason. Then all the SS symptoms without the diagnosis. It was always like waiting for the other shoe to drop. Believe it or not I am grateful for this diagnosis so I will never have to hear again that my symptoms were too vague and they didn't know what to say.
Hope you are feeling better soon.

Quote from: jpd54 on April 02, 2013, 08:37:19 AM
I have always said I could handle anything as long as I know what it is.  It's the not knowing that drives you crazy. 

Congratulations!!!  We will all be here for you.

                       jpd
Sjogren's, seronegative RA,  ckd, hyperparathyroidism, asthma,  osteoporosis,  Meds:  amlodipine, low dose Prednisone, calcium, sodium bicarbonate. Also, multivitamin and B complex

sarahjane

#7
April 02, 2013, 03:02:28 PM
Wow thank you everyone! I can't wait to get some of my life back  ;D
And thank you for the tips...I was so happy to have the drugs I took one straight away and an hour or so later had tummy pain and nausea. Yep should have read this all first heh heh !
I look forward to sharing good news with you all
Sarah
sjogren's syndrome, psoriatic arthritis, fibromyalgia, hashimoto's, erythema nodosum, saphenous nerve neuropathy, myositis, cervical spondylosis ,TMJ, Loinpain Haematuria Syndrome, hepatic cysts
Hydroxychloroquine, MTX, folic acid, Pregabalin,Amitriptyline, Vit. D, co-dydromol,levothyroxine

sarahjane

#8
April 02, 2013, 03:30:47 PM
ps I had my eyes checked in January so they have a base line for me :)
sjogren's syndrome, psoriatic arthritis, fibromyalgia, hashimoto's, erythema nodosum, saphenous nerve neuropathy, myositis, cervical spondylosis ,TMJ, Loinpain Haematuria Syndrome, hepatic cysts
Hydroxychloroquine, MTX, folic acid, Pregabalin,Amitriptyline, Vit. D, co-dydromol,levothyroxine

SjoGirl

#9
April 02, 2013, 04:55:03 PM
FYI I had lots of gastro issues when I started hydroxchloroquine, but it's improving as weeks go by. I am on generic my rhuemy said she would switch me to brand if issues continue.

I fought the diagnosis for months and found greater peace, and ability to figure out how to live as full a life as possible after accepting it. I don't like it and will keep fighting, but I sleep better and am generally much happier.

May the same be true for you.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.
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