Are we underestimating the impact Sjogren's is having on our health?

General
1

I have been reminded by my GP that Sjogren's most likely has more affect on my health than I realize. That just because it's considered to be secondary to the Psoriatic Arthritis, does not mean it is secondary as far as severity! It seems that there are few of us who have ONLY Sjogren's Syndrome, and it's possible that we also have another systemic autoimmune disease that is being treated much more aggressively than the Sjogren's!

http://www.rightdiagnosis.com/s/sjogrens_syndrome/complic.htm

What are your thoughts?

2

I just get to the point I don't know what came first, the chicken or the egg with all the different diagnosis's I have. I think your doctor made a good point, but it's hard for me to say which ailment I have goes with what disease as so many of the symptoms overlap.

3

Hi elizabeth,

I know exactly what you mean! Overlap symptom, was my very first diagnosis that was pointing to autoimmune, and from there it snowballed and the dx became more precise, and even more confusing as to which disease was causing a problem! Everything else I have is discussed, targeted, but the Sjogren's is rarely mentioned, however I plan to mention it on 4-4 with my Rheum. He may already be addressing it though, he is targeting my white blood count for at least 6 months.

I wish you well, hopefully things will change as far as an earlier dx and better treatment for Sjogrens!

4

I think you are correct. I got this dx about two years ago, and since this time, I have gotten sicker and sicker. I’m getting frequent sinus infections and about half of those turn into bronchitis. I’ve also developed some neuropathy in my feet. Now, there is discussion of possibly needing special injections to boost my immune system. Also, of related concern, is that many of my doctors just don’t seem to have good knowledge of this illness and stick to the notion that it is only a problem of dry eyes and mouth. Right this very second, I’m in a reclining chair…very sick and frightened. I think many doctors underestimate the systemic effects of this disease. BTW, anyone else getting frequent sinus infections?

5

Thanks! Hope you get some relief as well.



SK said:

Hi elizabeth,

I know exactly what you mean! Overlap symptom, was my very first diagnosis that was pointing to autoimmune, and from there it snowballed and the dx became more precise, and even more confusing as to which disease was causing a problem! Everything else I have is discussed, targeted, but the Sjogren's is rarely mentioned, however I plan to mention it on 4-4 with my Rheum. He may already be addressing it though, he is targeting my white blood count for at least 6 months.

I wish you well, hopefully things will change as far as an earlier dx and better treatment for Sjogrens!

6

I have primary Sjogren’s and while I don’t get sinus infections, the tiniest of colds (which I now get very often) usually turn into bronchitis. And I find as well as you, Nomad, that most Doctors know very little beyond the dryness symptoms. For me, those are not my worst symptoms and were not what caused me to push relentlessly for a diagnosis. My worst symptoms are neuropathy in my face, fatigue, brain fog and overall body/joint pain. Needless to say, I had a few doctors brush me off as nuts and even the first Rheumy I went to insisted I couldn’t have Sjogren’s (even though I had a positive lip biopsy), because he said said Sjogren’s doesn’t cause those symptoms. Frustrating!

I honestly feel that for the most part (and I envy you people who have doctors that understand), we have to take our health in our own hands. Nomad, the best thing I’ve done for my Sjogren’s is to go gluten free. I know it’s a fad right now and I get a little embarrassed to tell people, it really has helped. If I cheat, (and do from time to time) I always get a flareup of Sjogren’s - if I am careful about avoiding it, my symptoms are mostly mild and manageable. Something to think about trying. Best of luck.
Linda

7

Hi SK, Linda and everyone…

Linda, those are some difficult symptoms! my rheumie was fantastic when my Lupus was active, but is almost indifferent to SS. it is very strange. I have recently gone gluten free as well. Four of my doctors suggested this, so I really took notice. I am practically sugar free and dairy free too. I also don’t eat corn. I no longer drink soda ( was barely doing so anyway) and cut my coffee down to 1/2 cup in the morning and 1/2 cup in the late afternoon of low acid coffee from Trader Joes. I drink more and more water and try to drink mostly very good quality water too. I am eating a lot of vegetables…and have a green drink about every other day. I only use Truvia sweetener, and not very much of it. I’m cutting back on that too. I dropped five pounds almost instantly when I went gluten free and especially for someone with as many health problems I have…including repeated sinus infections, etc. my energy is surprisingly good. The energy improved after going gluten free. I’m glad to find this group, as I’m going through a tough time right now health wise. I don’t mean to be contradictory…but the weird thing is going gluten free has actually helped in terms of energy and a little with body aches too.

8

Hi Nomad and Maggie,

Yes when allergy time comes around a few times a year, I go from having a sinus infection to having bronchitis. The two years on Enbrel, I began having UTIs. After being told by my GP that I had no immune system left to fight anything off, back in January, he took me off the Enbrel, and I have not resumed it!

I also have grand kids in and out, and as much as I love having them, they always bring some kind of 'bug' with them!

Yes, having a Doctor who is actually AWARE of the more serious side of this systemic autoimmune disease is crucial to our well being. My GP did bloods over and over to confirm Sjogren's, sent me to my first Rheumatologist who spent about an hour and a half examining, questioning me, only for her to tell me that I did NOT have Sjogren's, that it took a specialists to read the blood tests ( which my GP responded to as BS) and that I did NOT have any kind of arthritis or even fibromyalgia! The neurologist told me after about 6 visits and numerous expensive invasive tests that my only problem was that I was STIFF!

When I finally got to my present Rheum, and cried about all of this to him, he reassuringly said, Susan, all they had to do was look at your pitted fingernails to know you have Psoriatic Arthritis, and yes, you do have Sjogrens, and Rayanuds, and the fibro was most likely caused by the PsA! Needless to say he and my GP are keepers! Even though my GP thought it was RA, he was close enough. PsA and RA are VERY similar, and the treatments are also very similar, if not identical.

My current Rheum was the last stop before my husband packed me up for the Mayo clinic for a confirmed diagnosis!

Yes, I believe we are being made feel like hypocondriacs or demeaned in some manner, but in actuality, they are underestimating the disease, and they do NOT know how to treat it, because there really aren't any meds specifically for Sjogren's.

I suppose you could say DMARDS and Biologics, however I'll bet that in most cases those meds are actually prescribed for a different autoimmune disease!

9

SK…what an awful experience! I’m sorry you too are getting sinus/bronchitis. Have you ever analyzed what percentage of the time you get this after seeing your grandchildren?



Our son, his wife and our new grandson live in a city about four hours from us. We purchased a condo there and visit them about every six weeks. With each visit, I seem to get a sinus infection. At first it was almost with each visit, but I got one for each of the last three visits.



I went to an ENT locally. He can be a rather uncaring doctor…I personally think these types of docs are dangerous. I need to find a new ENT AND rheumatologist. Anyway, he said I might have an allergy to something in the condo AND a faulty immune system…it just can’t handle being exposed to germs and/or allergens. Said I might need to take gamma globulin shots, have you ever heard of SS patients doing such a thing??? Never mentioned the SS…Sigh.



Have you had any luck with any products in attempting to prevent sinus infections or bronchitis? I haven’t.



Right now, I think I have bronchitis…and am trying to decide if I should go to the emergency clinic or wait until Monday and see the GP. Does bronchitis always require antibiotics?



I’m pretty down right now.



Thanks.


10

Yes, antibiotics are ALWAYS required when you have bronchitis! Some would say there are substitutes, such as herbal treatments, but unless you are, or have, a master herbalist/Holistic Physician, it's much easier, safer and more effective to just go get the exam and script. My GP will almost always see me the day I call, and I'll be calling Monday too about the UTI that I still have after just completing one course of antibiotics for it. Back to my train of thought, if not the day I call, then the day after. I am most fortunate. His wife is also a GP, so chances are always good for me to get one of them same day. I prefer him, he is more of a hands on, I'll take care of it type Doctor, she is more of a farm you out to a specialist type.

Only YOU can decide if this warrants a trip to the ER. If you anticipate you will not be able to see your Dr on Monday, you may want to consider going to the Urgent Care or the ER.

I have had croup/bronchitis since birth, so I am just susceptible, and who knows, could it be the genetic disposition at work even then? My great grandson was born with Psoriasis, so I would think the answer is YES.

Yes, environmental issues are a big problem and factor with Sjogren's patients, it's one of the topics I was planning on researching and posting a discussion on. Could be unseen mold, dirty A/C vents, degrading wall to wall carpets, or lingering paint fumes. The list is incredibly long, and we are just so susceptible to them!

11

A big question to ask yourself is "do I have to change Doctors, or is my current Physician approachable enough to ask that they become more familiar with the more serious side of Sjogrens". Only you and he/she can decide this.

12

Nomad, I'm sorry you are feeling so bad. I hope that you can be in good medical hands very soon!

Wishing you well,

SK

13

I have the opposite with my Rhuemy. This current one and the past one. They act like Sjogren's is a nothing diagnosis. Like I'm blowing it out of proportion. But I can tell that it takes so much out of me. I do know that my depression is getting worse because I am hurting a lot worse (this could be Fibromyalgia or not) lately. This new Rhuemy was positive I had Lupus, but all the blood tests came back normal. *shrug* I honestly don't know what to do from here. My Rhuemy is at UCSD. They have the best doctors around, yet he is one that is treating it like Sjogrens nothing. What do I do?

14

Thank you SK.

My rheumatologist told me when I was diagnosed that SS, it was just a pain in the ----…nothing serious. The weird thing is at times I felt like he would over react when I was suffering with Lupus symptoms (that was at times kinda bad). I had active lupus for a good ten years during my twenties and early thirties. However, with SS, he seems to not care and seems unfamiliar with all the big problems…even when I had dental issues. I’m completely baffled by his indifferent attitude. Instead, he seems to determined to get me on one of those bone density drugs, even though my bone density test was pretty good (long story there). He seems completely weird this go around and I do not feel secure with my medical care at the moment.



The sinus stuff has tired and weakened me…since we were going to that other city and visiting family about every six weeks…and I was getting sick about every six weeks. That is a lot of sickness! No one as factored in SS as part of this, but I have. The no gluten diet has helped a bit with energy…but being sick like this with no “apparent” cause and lots of confusion has been upsetting.



BTW, this rheumatologist has been my doctor for thirty years, so the thought of leaving him really bugs me. He is considered the best in my city when it comes to autoimmune problems. I never dreamed that he would be so uncaring and unfamiliar with Sojgrens and I would feel very uncomfortable telling him (of all people) to learn more about it. He is generally nice, and has enjoyed a good rep (and a bit of a big ego) regarding autoimmune illnesses, but with reference to SS…he just doesn’t have “it.” He thinks of SS, as nothing more than an annoyance.

15

Um, I feel for you! You ARE in a most uncomfortable situation, but if you are not being taken care of, and you continue to get worse, what good will tip toeing around his ego do you? I really don't mean to be blunt or disrespectful, it's just the truth!

With all his clout in the community/medical community, if you tick him off, you'll never be accepted anywhere else in the area, so what about your GP? Are you confident enough to ask him for better care for your Sjogren's, if you ask nicely?

16

I'm so fortunate, my Rheum is an assist Univ Prof, so he's on the ball, knows everything, and if he does not, he's on his iphone or out of the room and on his office computer to find out! He is outstanding, but I've had the run around for 7 years going to specialists in search of one who would confirm my GP's beginning findings, and complete the dx. And I've had some words with a few, been dragged out by my husband before I could have my words with them, and some I just hold forever in contempt! Went through 7 years of systemic damage to my body because they were under-informed, or just disinterested.

I really do understand! STIFF as the only dx from that neurologist was epic, I thought I would be arrested that day if I opened my mouth! I flew out of there, I was angry enough to pull a full grown tree out of the ground by it's roots, had I had the strength!

I still think a teaching hospital or a Physician of that mindset are your very best bet! My GP, even my DC, are always willing to learn, or at least consider new things, and can agree! Sometimes the GP says surgery, the Rheum says not yet, and the DC understands both! So THEN where do you go? ha!

17

Oh gosh, Fascina - I am so sorry, but totally understand. After leaving my first Rheumy in tears (as he insisted I didn’t have Sjogren’s, then sending a letter to my GP to tell him he thought I was suffering from depression) I went to the only other Rheumy in town (small town). She is open minded about Sjogren’s but insisted I didn’t have arthritis in my knees - which were so bad that they were bowing out to the side and even I could see from the x-Rays that they were beyond bone on bone. (I had them both replaced last July). So, even though she’s open minded about Sjogren’s in general, I don’t have a lot of faith in her ability after the knee assessment… My hubby has suggested we go to LA or San Fran to see a doc, but since there are not a lot of treatments anyway, I’m not sure it’s worth it.

Linda

18

I have secondary Sjogren's and more serious symptoms than the lupus. It's caused an interstitial lung disease called bronchiectasis (adult cystic fibrosis). The Sjogren's has dried out my lungs and made my bronchi so stiff that they do not contract or dilate and I can't remove my secretions in my lungs unless I use a nebulizer with various med.

Sometimes the symptoms of Sjogren's seem like another disease which was my case. Tez (Terri) can give you a word or two about this.

You got to hold on.

19

Hi Maggie,

I've been digging around, and this looks like it just might be worth the trip from the Pismo Beach community. Beautiful area by the way. This looks VERY promising, think about it, talk to your husband, perhaps call and ask if your insurance is accepted first as well.

http://www.medicinenet.com/sjogrens_syndrome/santa-barbara-ca_city.htm

I know of no other Sjogren's syndrome center anywhere, but am more than willing to be corrected!

Here's one in LA,

http://www.medicinenet.com/sjogrens_syndrome/los-angeles-ca_city.htm

20

Hey USAgurl,

Always a pleasure to talk to a friend of Terri's! Oh, I really feel for you, and fear many of us are heading in that direction.

http://www.ncbi.nlm.nih.gov/pubmed/21194883

http://www.ncbi.nlm.nih.gov/pubmed/?term=bronchiectasis+from+Sjogren%27s+syndrome

I'll be the first to admit that you and Terri know more about this than I do, but I feel it is now time to move this to the forefront of my research and have a serious heart to heart with my Rheum about the Sjogren's. It was the most startling difference I had when I was told to STOP the Enbrel, as I expected the bone pain to be the very worst of it, and as bad as the bone pain was, the Sjogren's was much worse!

I'm glad you're here with us, and I hope that you are getting the very best care available.

Great big hugs,

SK