Author Topic: Hi new Sjogren's friends from Judbow too  (Read 4295 times)

judbow

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Hi new Sjogren's friends from Judbow too
« on: April 18, 2011, 04:43:30 AM »
Hi friends,

I am new to this site...Have just been diagnosed with Sjogrens.

After lots of specialists, , I was finally sent to a Rheumatology Dr.  First, they thought I had M.S.  I was devastated...  He suspected that I had this disease from my blood tests and my MRI.  Showed brain leasions....My final diagnoses was made after a lip biopsy of my saliva gland, and sure enough it was Sjrogrens.   He started me on 8 prednisone a day and 2 Plaquinel a day....After 2 weeks on these meds, I was feeling fantastic .... I cannot believe it..I am now cut down to 4 prednisone and going down to 2 by the end of the month...I, too thought I was just getting old,  I am 63, and was so tired all the time, and achey
The only problem is I can't sleep, up every 2 hours... I am still working, so it takes a toll when you get little sleep. The Dr. thinks that once I cut the prednisone down to 2 per day, it may help this sleepness.
I am also on Restasis for my dry eyes... Thank goodness I have a drug plan.....

Just wanted to let everyone know that my life has totally changed with these drugs...I am happy again, energetic again, and love life again.....I am not one for wanting to take these meds, with all the side effects, but seeing the change in me and how great I feel, it is worth it... My friends and family cannot believe I am the same person....

Just wanted to share my story with everyone..

Judbow
« Last Edit: April 18, 2011, 09:06:33 AM by Linda196 »

Joe S.

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Re: Hi new Sjogren's friends from Judbow too
« Reply #1 on: April 18, 2011, 06:55:08 AM »
Judbow, Hi. Welcome to the forum. To meet the rest of the  group I suggest that you go to the social hour/ welcome side and introduce yourself again. You will find a lot of information on this forum. Some of us have posted what we are taking in our signatures.
« Last Edit: April 18, 2011, 09:07:07 AM by Linda196 »
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Linda196

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Re: Hi new Sjogren's friends from Judbow too
« Reply #2 on: April 18, 2011, 09:08:48 AM »
Hello and welcome, Judbow.
As you can see, I've moved your post to it's own thread, to better introduce and welcome you.
I hope you find Sjogren's World to be a supportive, helpful and occasionally entertaining place.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

Catilee2

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Re: Hi new Sjogren's friends from Judbow too
« Reply #3 on: April 18, 2011, 03:14:01 PM »
Welcome Judbow,
       I'm also 63.  Glad to hear the meds are working for you!  You're right the fatigue and achiness  can really get you down.

Catilee 2

Chickpea

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Re: Hi new Sjogren's friends from Judbow too
« Reply #4 on: April 19, 2011, 04:42:03 PM »
Welcome Judbow!

I'm really glad you found us after such a worrying start to your SjS journey.  Like you I had an MS diagnosis.  Mine lasted for a couple of years, then I was in 'limboland', and then a rheumatologist gave me the Schirmer test and said ... it's Sjogren's.  Which I'd never heard of!

It's great that you got started on Plaquenil and Prednisolone so quickly.  Both will make you feel a lot better, although Plaquenil can take months to really kick in.  I wouldn't be surprised if it's the Prednisolone that's making you feel both so much better, and unable to sleep.  When I started on it - 60 mg a day, now 10 mg - I couldn't stop baking.  I'd even stop watching a football/soccer match on TV to make cookies!

Keep posting and let us know how you are feeling.

Take care - Chickpea

Pisces24

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Re: Hi new Sjogren's friends from Judbow too
« Reply #5 on: April 19, 2011, 05:44:51 PM »
Welcome to the group!  Unfortunately it seems the norm to have to see A Lot of specialists before we can get a positive diagnosis.
I understand about being scared about a tentative diagnosis of MS.  I had a tentative diagnosis of "some type of cancer" and if I got certain symptoms to go ASAP to the ER.  After a month waiting for the ceiling to cave in, I finally decided this was no way to live my life - letting it be emotionally put it on hold.

But I also got a tentative diagnosis from a specialist who said "it was probably something I got from my cat". The funny thing was I didn't have a cat when the whole thing started either.  ::)

So glad the medicine is making a positive impact on your quality of life.

Patze

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Re: Hi new Sjogren's friends from Judbow too
« Reply #6 on: April 19, 2011, 08:33:38 PM »
Hi Judbow, and let me also welcome you to the SJS World and family!

I'm just a few years younger, but you'll find a lot of members here have sleeping problems and I'm another one (still work as well).  There were many days that I never got sleep and still worked the usual shift and it about killed me.  The rheumy finally took the bull by the horns and has been working with me to try to get my "lack of sleeping" under some kind of control (other doctors just ignored it outright).

I'm so glad to hear that the meds are working for you!

Take care of yourself -

Patze
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season

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Re: Hi new Sjogren's friends from Judbow too
« Reply #7 on: April 19, 2011, 08:51:34 PM »
Hi Judbow, welcome to the board. I'm so happy you found some meds that are helping you.

judbow

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Re: Hi new Sjogren's friends from Judbow too
« Reply #8 on: April 22, 2011, 06:02:34 PM »

Thankyou for all of the supportive replies....I am so glad I found this site...I had never heard of this disease before, and am still learning daily...The lack of sleep is really getting me down, the dry throat and nose is awefull, and the numbness in my foot is driving me crazy.... Also, my bottom lip is still numb since the biopsy, 3 months ago...I don't know if the freezing needles hit a nerve or what.... But, as least, I have a diagnoses, and can go from there.. For, years, I didn't know what was the matter with me, but knew I wasn't well.  Hopefully, now, I can move forward...

Thanks everyone,

Patze

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Re: Hi new Sjogren's friends from Judbow too
« Reply #9 on: April 23, 2011, 05:41:14 AM »
Hi Judbow,

I understand a numb lip after a biopsy and I hope that the numbness ends soon.

By chance, have you had a sleep study done?  I know that before the CPAP, I would snore and be gasping for breath (when I did sleep).  

Have you tried a nasal moisturizing spray for your nose (there some for the mouth as well)?  Like many others here, I also use a nasal spray and there are several good varieties to choose from.

About the numbness in your foot, have you seen a neuro yet?  If you have, what did he say?

Sending you a super fluffy and guaranteed soft ( H U G ), and hoping that you get some sleep soon.

Take care of yourself -

Patze
« Last Edit: April 23, 2011, 05:42:50 AM by Patze »
Our home page  http://www.sjogrensworld.org/index.html
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newhorizons

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Re: Hi new Sjogren's friends from Judbow too
« Reply #10 on: April 23, 2011, 12:49:54 PM »
Hi Judbow, Welcome to Sjogren's World... It has been the light of my life since I found the site.  It is wonderful to be able to post with others and especially you as I am 68 and hanging in there...not by my toes, either!   :(

You love your work and want to continue? Down here we can cut it off at 62 and I had to go on disability due to horrid eye issues at 52.

Keep in touch.    J  :-* Y