Hi- I found out that I have Sjorgrens from a lip biopsy- negative blood test. What I was wondering, does anyone have constant post nasal drainage 24/7? I also have dry lips,gums,eyes,vaginal dryness, constipation,frequent urination. fatigue, pain all over my joints, dry eyes. My question is , it seems like I can feel the drainage around my whole eye socket and then feel it run down my throat - I know it sounds strange but I do. It also got worse after I had sinus surgery and had a total ethmoidectomy, maxillary openings made larger and turbinate reductio. I also have small fiber neuropathy, pressure on top of my head and I lost 20 pounds within one year. My skin is dry and my face and under eyes are swollen. I have dry nasal crusts inside my nose as well. Is there anything that can help!! Has anyone ever taken anything that has helped with the post nasal drainage. Please don't say nasal irrigations, I have been irrigating my nose for over 10 years and nothing helps. Is there any medication that ever helped anyone. I had this over 10 years and just found out now. I am ready to just give up. My husband is totally not interested and my grown kids think that there is nothing wrong with me. I have NO SUPPORT SYSTEM AT ALL. I don't think I can keep on going on like this, things just keep on getting worse with the Sjorgrens. Any input or suggestions would be of great help.
The following user gives a hug of support to Laaz1957: chillip1123 (05-06-2013)
Hi Laaz, sounds like you're having a rough time. My heart goes out to you. I've been diagnosed for about a year and a half, but my symptoms have been going on for years. At times I have been very ill (enough to make me take to bed for weeks at a time) and I can relate to all of the symptoms that you describe. It's very frustrating when no one seems to understand. I suppose because we look well, it is hard for other people to "get it." Personally I found the fist year to be hardest and now I have begun to find a new "normal". I am on plaquenil and it has helped some of the symptoms but definitely not all of them. Are you on any meds? I have sinus problems too and notice that they are worse in some environments. (for example at work) I wonder if any of it could be allergy/sensitivity (in my case). I'm on 20 mg of Reactine daily for autoimmune uticaria (hives) so that may be helping me somewhat, and the only other thing I can think of to "dry things up" would be some kind of antihistamine. But I would talk to my Dr or pharmacist first because so many of them are drying. For the nasal passages themselves I sometime use polysporin or vaseline for moisture, but I think that gels are also available. Maybe you could try one of those? So many things are trial and error for us that I think we end up trying many different things before we find what works. I rely a lot on my Rheumatologist for advice and information. Sometimes he has a solution and other times he sends me to another specialist who may be able to help. You may also like to go to the Sjogren Foundation web site. They are a wonderful resource. Someone recommended a book to me called The Sjogren's Book 4th Edition. Its also a wonderful resource and is available from the Sjogren's Foundation.
I wish you well, and I hope that something in this may help even just a little.
Sjogren's can be associated with other autoimmune disorders, and because of the nasal sores/crusys, you might want to be checked for some related AI conditions like lupus. There is a rare condition called Wegener's granulomatosus, that involves chronic sinus infections. To check that out an ANCA blood test can be done. Many people with autoimmune diseases have allergies, which predispose to sinus infections, so that is more likely, but might as well be thorough. The small fiber neuropathy occurs in lupus, as does weight loss, fatigue and joint pains. I think you have more going on than just Sjogren's, and would ask your rheum to check out other things as well. I'm sorry your family is not supportive. It is hard enough to feel unwell so much, without others thinking you are just fine and expecting you to just buck up. I hope that changes and you get more help/answers and support.
To:Knot and Ladybud: I had x-rays done of my hands, shoulders, and chest . I hurt ALL over my joints. x-ray came back that I overgrowth of bone (Spurs) throughout the spine, degenerative disease of thoracic spine-both sides - right and left shoulder also has overgrowth of bone (spurs) of the joints and distal osteophyte formation of distal fingers (overgrowth of bone)- spurs. My RA factor came back negative. My Igg levels came back at 530 which is low, the only time they come up is when I was on sub Q infusions of Igg, when I stop - the levels drop down. What other autoimmune disease would cause these bone and joint issues???? besides Sjorgren's ?? Please give me any ideas. My Rheumy is on vacation and I don't see her until may 21. Thank you both for your reply - at least there is someone out there that might listen to what I have to say. I am at the point that I can't stand my husband, he got fired from his job and is after me to work. Well my kids forget it. Remember, they think there is nothing wrong with me. Thanks-
Lupus is one, there are spondylarthropathies like ankylosing spondylitis that affect mainly the spine, RA can be present with a negative blood test. A lot depends on what the spine xrays look like, and what joints are involved. RA affects the knuckles of the hands whereas osteoarthritis affects more the fingertip joints. You need to have a good evaluation and press for finding out what is wrong. I would make sure your blood tests include a Vit B12 and folate level too since you have neuropathy. Have you ever had blood tests done for arthritis other than RA? I would look for a support group through the arthritis foundation or sjogren's foundation. Maybe meeting others with problems like yours will give you support. A diagnosis would help convince your family you are not just whining for no reason!
To: Ladybud-- I am slowly getting more lab results off the computer that I had taken but don't see the Rheumy until may 21. My CCP antibodies Igg/IgA was at 2 the range should be 0-19 My Igg levels were at 535 - should be at 700-1600. My complement C-3 was at 173 the range should be 79-152. Does the elevated C-3 indicative of Sjorgren's?? My C-4 was at 37.4 and the range should be 16-38. I am still waiting for the rest of my test to come back. Could you give me any input on the C-3 and C-4 levels???? Thank you!!!!!!
You sound just like me. I have Multiple Sclerosis and have been attempting to get a true Sjogren's Diagnosis for a long time now. My Rheumatologist KNOWS that I have Sjogrens by evaluating me clinically but my blood tests never came back positive, until now. I have severe dry eyes which have been helped greatly by cauterizing my tear drainage ducts. I am completely EXHAUSTED all the time. Tonight I was so tired at dinner that I actually dropped the salt shaker and broke my water glass. I could not hold it, I was that exhausted. They sent me home from work today because I was breaking out in a cold sweat and looking like I was going to pass out. I've been battling this for way too long without medication, and I'm at the point where I can't do it anymore.
Are you on any medication to help your Sjogren's? My rheumatologist had told me he would give me Plaquenil, but with all the meds I'm on for my MS he didn't want to add something else.
I feel for your situation my friend. Luckily I don't have the vaginal dryness (yet!) but I have EVERYTHING ELSE. It sucks. I also get chronic sinusitis and inflammation because I'm just not draining.
In the meantime I can offer some advice to make you feel better:
Rinse your nasal passages with a saline solution (such as neilmed sinus rinse) several times a day.
For nasal dryness, use AYR nasal gel, or Simply Saline nasal gel. Do not use Vaseline or any antibiotic ointments. I always thought this was a good idea until my rheumatologist told me has has had Sjogren's patients who were so dry, they aspirated the vaseline or ointment into their lungs and got Pneumonia.
For dry eyes make sure all the tear drops you are using are preservative free. Consider getting tear duct plugs or having your tear ducts cauterized to permanently close them. This will keep what little tears you do have, in your eyes instead of letting them drain out.
DO NOT take anything for allergies. No antihistamines. All they will do is dry you out more. My Sjogren's dr and my Immunologist had me immediately stop taking my Zyrtec, and I don't feel as dry now.
What did your rheumie tell you about the sinus drainage on May 21st when you had your appt.? Your post reads a lot like my life also. Since being dx with Sjogren's in 2007, I have had a constant nasal drip which has kept getting a little worse. I was on hydroxychloroquine (Plaquenil) for all this time but it never kept my nose from running. In Jan. of this year (2013) my labs shot up. By that time I was taking the max. dose of Plaq. you can take so my rheumie said I should switch to Methotrexate. This was fine and I did. By May the Methotrexate had my labs at good levels, but my sinuses were going crazy. I have sneezing fits at all times of the day or night, and my nose just runs all the time. This is going to sound crazy, but it feels dry all the while it is running!
The doc put me back on 1 dose of Plaq./day. It has been a little over a month and nothing much has changed. At this point I am making plans to see an ENT about the matter. I am so sorry the Plaq. did not keep on working. At least I felt well enough to get some of my work done around my house. Now I may have two days/week that I feel well enough to cut the grass and that's it, can't do anything else. I sleep a lot and feel like I have to have naps and I am in pain all the time. I also have fibromyalgia--this doesn't help. Let us know what the doc said. Have a great day!
It's so easy to feel that you have no support at all. I've felt that way at times but I think a lot of what you may feel is just helplessness on the part of the people around you. Also, if your children are fairly young and healthy they may not have enough life experience to realize what illness is.
I have Sjogren's (systemic), have had three of four sinus procedures and a stint/expander in my left lower sinus at the present time. I've had Nissen Fundoplication for severe acid reflux and gall bladder removal due to Sjogren's related GB disease. I've lost teeth, my hair is thinning and I'm unable to eat much without gastric pain and/or constipation and diarrhea.
I also have Fibromyalgia and neuropathy, the thick mucous in my nose, throat and sinuses and also in my esophagus which I cough up every morning. If you can take Salagen it can be of some help for the problems you refer to. Also if you are irrigating your nose and sinuses are you using purified water. It makes a great deal of difference in my case.
I take Plaquenil, Lexapro (very low dose), Ativan (1 mg daily), 50,000 Vitamin D every two weeks, and just started Lunesta to help with sleep. If I don't sleep I get very depressed and agitated. I hope you are sleeping.
It's very easy during down times to want to give up. I know. I just went through an EGD two days ago that tore up my stomach and reflux and it will take me a while to recover from it. Everything is harder with Sjogren's but life is still good.
I pray you have a good day and that things improve soon.
To Laaz, So sorry, I never saw your question about the C3 & 4, but complement levels can be low or high in autoimmune disorders. It is fairly non-specific, but significant when abnormal, so fits with your picture and adds objective evidence to substantiate an autoimmune disease. To all who have chronic sinusitis, you should ask for ANCA blood tests to check for Wegener's Granulomatosus, an uncommon disorder that causes chronic sinus problems and vasculitis. It falls into the rheumatology category as well.
[QUOTE=Laaz1957;5171183]Hi- I found out that I have Sjorgrens from a lip biopsy- negative blood test. What I was wondering, does anyone have constant post nasal drainage 24/7? I also have dry lips,gums,eyes,vaginal dryness, constipation,frequent urination. fatigue, pain all over my joints, dry eyes. My question is , it seems like I can feel the drainage around my whole eye socket and then feel it run down my throat -
I have just learned I have Sjogren's Syndrome and possibly fibromyalgia and am trying to find out what I can do about it. I have had post nasal drip for several years but didn't mention it to my RA doctor because I had assumed it must be an allergy of some sort. After reading your post, it makes sense why it never goes away. My other symptoms are all-joints pain, dry eyes, dry mouth-throat-lips, peeling of skin inside my mouth, dry skin (that used to be oily), fatigue, frequent urination (my RA dr. told me that wasn't a symptom), hair loss, sleep problems, gastro/stomach pain and gas. Yes, not many people understand because they can't feel how miserable it is when you get so many symptoms eating away at you at once and nobody else I know has this. I hope we can find ways to deal with all of it. Take care!
I really empathize with you. I have no support system either, despite a myriad of long term symptoms, including yours along with now chronic hematuria, pyuria, and both phantom and real UTIs, and developing a strabismus along with tons of painful eye issues, it is highly frustrating, I know. It's hard to be dismissed by loved ones and medical professionals. I constantly get told by my Endo or my Rheumy that certain things just are not linked. But they are. No one is identical and none of us is making this up. There are clear connections and unique manifestations and if I could, I would like to tell you, I am sending you an enormous mental hug. If I hear once more how dry mouth (and spending thousands to preserve my mouth and then still battling daily with decay) or how red, veiny, photosensitive, crossed, swollen eyes, are no big thing, I might scream. Add to it all the other discomforts etc ... it's maddening.
And it affects all of our life and makes us (at least me) feel changed, different and somehow mourning the choices and ease we once had with simply opening our eyes and not having pain, or wearing makeup easily or swallowing, or not aching etc ...
I have tried a lot of nasal irrigation too but still get a chronically crusty nose and blood. I wish I had some wonderful cure-all for you on that front, I don't. But I do get to say you aren't suffering alone and sometimes that helps.
I really hope it eases up for you and you find something that works for you.
Side note: I am uninsured. So I completely understand how difficult all these expenses are. I am now deeply in debt from everything I've had to charge. And it's hard on a marriage. I am so sorry your Hubby lost his job, it never hurts to ask Drs for discount rates. Sometimes they offer it for uninsured patients and sometimes not.
Last edited by JenLP; 10-07-2013 at 06:02 PM.
Reason: additional comment
Halloween Baby, I am not sure you were responding to me or to Laaz, but it doesn't matter, I still thought your words were encouraging and want to thank you for contributing to all of our conversations.
In my situation, my rheumie upped my Plaquenil again in August and finally now in October, I am having an easier time. I still have attacks of the sneezing and draining and blowing and my eyes are so bad, but I think I am over the worst of this mess. I have been in this flare-like condition for a year. I am sick of it. My energy level is not back and so I don't think I am completely back to where I was. Usually I am a person with energy especially in the morning. I am used to getting things done and now I'm surrounded with so much to do and I am so tired I can hardly get up.
Take care and write again, soon.
alfwr, I am so sorry to hear you have so many of Sjogren's symptoms and are feeling so bad. As time goes by and you read other peoples' experiences with their similar symptoms, you will be able to 'ease into' a life routine of doing what comforts you along with doing what the dr(s) outline for you. Anyone with this illness has rocky segments of the road along the way and we are here to share what we have learned with you. Please feel free to share with us your concerns. Hope this note finds you feeling improved.