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DryEyes
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/5/2010 2:09 PM (GMT -7)   
Hello Everyone
 
While scooting around the internet I came across this forum.   I have been diagnosed with Primary Sjogren's Syndrome and other illnesses that run hand in hand with it.  I am constantly on the hunt for new information about this disease and thought your forum would be another source to help me understand and cope.   Would appreciate any tidbits of info anyone would have.  

jodester
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/28/2010 5:18 AM (GMT -7)   
I am a new also for Primary Sjogren's Syndrome. I have a sister with Lymes that uses this site and it has been very helpful to her. I have found that the Sjogren's Syndrome info is just getting started on this site. I hope more people with Sjogren's will tell thier stories on here so I don't feel so alone. Thanks

puzzledbyitall
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 10/8/2010 8:52 AM (GMT -7)   

Hello, I to am new to the site.  I have this week been diagnosed with S.S and am feeling pretty fed up about it. Its not just the dry mouth and eyes, its all the other health problems that ccome with it.  Also I feel that my GP does not know enough about it to give me much support.  I, like you, feel very much alone in this, it is nice to have stumbled across this site.

Kind regards

Puzzledbyitall confused


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 10/8/2010 9:49 AM (GMT -7)   
Sjogren's in it's more serious forms should be treated by a rhuemotologist.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

puzzledbyitall
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 10/11/2010 9:22 AM (GMT -7)   

Hello Lynnwood,

Thankyou for your reply. It is nice to meet you.  I have been to see a Rheumatologist who after a very painful lip biopsy diagnosed S.S.  The thing is, no one has said if this is a serious disase or if its considered to be a minor one. My Gp doesnt seem overly concerned.  I have the problem with my mouth, very dry eyes, joint pains, heart murmer, minor leaking valve, and  IBS.  I dont know if this is all part and parcel of the SS as all these problems have been diagnosed as separate minor conditions  over the years and not as a collective thing. Can you advise please? confused


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 10/11/2010 11:02 AM (GMT -7)   
It's really up to your rheumy to decide if these other issues are from your Sjogren's or not. Your GP doesn't have as much training in autoimmune diseases like these as your rheumy.

Sjogren's can be very mild; but it can also be very serious if organ involvement occurs.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

puzzledbyitall
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 10/12/2010 1:30 PM (GMT -7)   

Thankyou Lynnwood,

I am due to see my Rheumy next monday, I had another blood test a week ago to see if its ok for me to take some drug he would like me to try. I will ask him that question.

Many thanks

puzzledbyitall :-)


Imp36
Regular Member


Date Joined Aug 2010
Total Posts : 47
   Posted 10/23/2010 11:55 PM (GMT -7)   
S.S is a moisture seeking disease that's why you get dry eyes,skin,mouth,nose and ears. I started suffering heavy nose bleeds 3-4 times a day. I went to an ENT and he gave a saline rinse followed by coating the inside of the nose with vaseline. It worked. It also goes after the lubricants in your joints and I ended up with severe joint pain. I can barley walk these days. It is a very serious disease. It's hard to diagnose because the symptoms mimic many other diseases and usually don't occur at the same time so they just treat each symptom as it occurs. It was a fluke I was diagnosed because at the time I had no symtoms. My PCP was doing routine blood work and my ANA test come back positive. She than ran a test for Lupus which was neg. and immediately sent me to a Rheumy who asked questions and did more sensitive blood test and she diagnosed my S.S that was 5 years ago. She told me to call her when I started have symptoms and she'd treat those as they occurred. I went 4 and a half years with no symtoms but 6 months ago everything hit me at once. Every joint in my body is in severe pain my knees are the worse right now. Get up and down is almost impossible without me crying in terrible pain and I've developed a high tolerance to the pain meds very quickly. I have been on just about everything and they have to keep upping the dosage. Right now she has me on 12 oxycodone a day and that barely takes the edge off. I've just had to learn as I go. I talk to my Rheumy in-depth which is a must,learn as much as you can. I also have done a lot of research on th Internet. You must actively participate in your treatment.

puzzledbyitall
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 10/25/2010 8:12 AM (GMT -7)   

Hello Imp 36

Thankyou for making contact with me.  I am sorry that you are having so much pain.  Over the weekend I to have had a flare up of pain in most of my joints, which has  kept  me awake, due to my joints burning and becoming stiff when I am warm in bed.

Like you, I had been treated separatley for different problems, it was only when I went to the dentist for a routine check that I mentioned my sore and dry mouth that she mentioned S.S. I then also had a routine blood test which came back weakly positve with Lupus. I was then reffered toRheumatologise. Lip biopsy was done and diagnosis confirmed.  I am due to start anti malarial medication soon. and will be going to physio on thursday for physio on my neck which is particlarly painful.

Are you able to tall me if this condition allows you to be registered disabled, as I am having increased difficulty in carrying shopping etc,  I also have problems parking outside my house, carring my shopping down the street to my house is very painful.

Do you also know if S.S is hereditory?

regards

puzzledbyitall


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 10/25/2010 8:55 AM (GMT -7)   
Sjogren's is a disabling condition in severe cases, it is on the list of US Social Security qualifying conditions. Your doctor may be able to help you with a handicap parking sticker.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

puzzledbyitall
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 10/26/2010 11:08 AM (GMT -7)   
Thankyou  Lynnwood
 
Can you tell me if this is also the case for the U.K. or can you tell me where I coould find this information.
Regards
Puzzledbyitall

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 10/26/2010 4:12 PM (GMT -7)   
Sorry, I don't know where to look for UK information about this. I'd start with my doctors office or a local hospital or someone at your national health service. Maybe someone will come along that lives in the UK.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Imp36
Regular Member


Date Joined Aug 2010
Total Posts : 47
   Posted 10/26/2010 6:07 PM (GMT -7)   
Puzzledbyitall
I'm not sure if it's hereditory or not. In all my readings I never came across that. I know other auto-immune diseases are hereditory like psorisis. What is physio? It is a disability, you should apply. After 2 years on disability you're eligable for Medicare.
To get a handicap placard-after you're on SSD you go to SS website and print out the form,fill it out,have your Dr. sign it and take it to the tag agency. It's easy. I was one of the lucky ones, my SS was approved one 1st try but a lot of people get denied and have to appeal it. Most usually get it after the appeal. Also you said you had to park down the street and walk home? In some cities you can apply to have a handicapped spot in front of your house if you have enough medical history to back up your claim.
Diagnoses
ESLD(End Stage Liver Disease),Hypothyroidism,Portal Hypertension,Pulmonary Hypertension,Pulmonary Arterial Disease,Sjogren's,Hepatic Encephalopathy,Varices,osteomyelitis,MRSA, and more secondary diagnosis.

Medication

O2 Therapy-24/7,Xifaxan-550mg 2X day,Lactolose 6-8 Tbsp day,Spironolactone 50mg 1X day,Synthroid 112mcg 1X day,lactlose 2 Tbsp 3X day,Oxycodone 25mg 4X day

puzzledbyitall
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 11/12/2010 2:56 PM (GMT -7)   

Hello

I notice that a lot of people on yhis thread are on lots of medication, as you are, have you had any experience  of taking Plaquenil 200mg tabs at 1 twice a fday.  I ask becaurse I have just started taking this in thelast few days and I am already feeling very nausious, has anyone else found this, I am reluctant to carry on taking it due to this sick feeling.

Kind regards

puzzledbyitall confused


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 11/12/2010 7:31 PM (GMT -7)   
Plaquenil can give you a upset tummy for a couple of weeks, but then it should settle down. Take with food to help prevent stomach upset!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

puzzledbyitall
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 11/13/2010 10:49 AM (GMT -7)   

Thankyou Lynnwood,

I do hope it is worth taking in the end.  welcome to jerome :-) regards


Mammagoat
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/15/2010 8:16 PM (GMT -7)   
I am new to this blog and I have been taking Plaquenil for the last two years and it has definitely helped many of my symptoms. My joints are my biggest problem, I have had surgery on both my hands, carpel tunnel and both elbows. I know that the stomach upset does get much better but if does cause excess gas. Oh well at least I am not walking around like a zombie. Great to be a part of this.

puzzledbyitall
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 11/16/2010 7:14 AM (GMT -7)   

Thankyou for your reply.  i have phoned my nurse help line for advice, hoping that they get back to me soon.  One of the problems is that there does not seem to be a support network in the U.K.

Is anyone out there from the U.K.?

regards


hootyhu
New Member


Date Joined Nov 2010
Total Posts : 18
   Posted 11/18/2010 5:57 PM (GMT -7)   
Hi All,

I am new to this forum too and very confused like a lot of you are. I have just been recently Dx with Sjogren's and lupus but I have no signs of dry eyes and mouth. (I work for an ophthamologist) I know that my Schirmmer's test was very wet....meaning my test strips were plastered to my face bacause of the tearing my eyes are doing, kinda gross! I am just finding out that SS also has joint pain which I have a fatigue! lots of it. I broke down and started taking a pred pack and WOW! I have NO pain! Yippie! my fatigue is a little better, I am still wiped out buy the end of the day but atleast Im not napping for 3 hours after a 1 hour trip to target. So what would classify as lupus and what would be ss? I am in the process of a second opinion and I hope that will shed some light on things. If there is anything anyone can pass on to me I would love it thanks
DX 11/2010 Lupus and Sjogren's
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