Advice for dealing with doctors

Hi everyone! I'm new to the community; decided it was time to connect with others suffering from Sjogren's, since no one I know here at home has even heard of the disease. Kinda hard to get people to understand why you're suffering if they have no idea what you're talking about! Here's a short background: I started having dry eye and dry mouth symptoms, almost overnight it seems, 15 years ago, at the age of 27. I bounced from doctor to doctor, some even implying that I must just sit in front of a fan to have such bad dry eyes (I'm a college professor, so there is no fan sitting going on here, as if someone would ever do that anyway). I finally wound up in Madison, WI at an oculo-plastic surgeon's office because my lids had become so drooped from the dry eye that I couldn't see by the end of the day. He said I probably had an auto-immune disorder that hadn't fully expressed itself yet, and he surgically plugged my tear ducts and repaired the damaged levator muscle in one of my lids. I had decent relief for a while, but my body keeps opening the cauterized ducts, in one eye I've simply regrown another duct. Over the years, the dryness got worse and worse, and I started to suffer from arthritis and Raynaud's. My GP ran blood tests, and I had a positive ANA (1:160, speckled) but no other positives, not even a high C-Reactive protein. She just didn't know. By then, I had begun to suspect Sjogren's after doing my own research. When I was FINALLY referred to a rheumatologist, he agreed that it was probably Sjogren's, but wanted to move slowly to be sure. He gave me a steroid injection for the terrible arthritis I had developed in my hip and shoulder, and within hours my eyes were watering like crazy. That was when he knew he was on the right path. I got regular steroid injections (about every 4 to 5 months) and then after two years, the SSA and SSB became positive. By then, he'd started me on Plaquinel (which has done wonders for my body pain) and Pilocarpine for the dryness. The pilocarpine worked great at first, but the effect wore off and I no longer take it. Fast forward two more years, and my beloved rheumy has left. Another doctor at the clinic took over his patients, and he immediately ran more tests, which came back negative for SSA and SSB (still ANA positive), and he says I am to stop the plaquinel because I don't have Sjogren's, I have fibromyalgia. He completely blew me off, treated me as if the last 4 years meant nothing, even though I am tons better than I was 4 years ago. I don't know how to handle this. I am, of course, looking for a new rheumy, but if I once again show negative for SSA and SSB, isn't a new one just going to do the same thing? I want to present myself as a patient who is informed but not pushy, and someone who has benefited from the treatment I've had for 4 years. I live in a smallish city with very few options, although Madison and Chicago are only a couple hours away, so that's an option. Anyway, any advice on what to say to this new rheumy? Should I just forget him and look for someone completely new, and hope that they are as good as the one I lost? Thanks!

And I should add that my previous rheumy was vehement that I did not have fibro, as I do not have trigger points nor do I have difficulty sleeping if my eyes are in okay shape. He was critical of the tendency for doctors to diagnose fibro if they haven't figured out what's going on, as he believes it prevents doctors from continuing to search for a reason underlying certain symptoms. I am wondering if I should just confront this new rheumy and tell him what my previous rheumy said, or if that will just make things worse.

I don't suspect Lupus and I didn't mention Lupus, so I can't answer that question. I do have Hashimotos, however, so I do know that could very well be the positive ANA cause, and I guess it could really be the cause of most of my symptoms. The last SSA and SSB blood tests were while I was still on steroids, so why they are negative can't be related to stopping steroids, so I don't think that they specifically caused the positivity or the negativity, but of course, obviously I don't know. I had my last injections on May 15 and the tests where I was SSA and SSB negative again were in June. The injections and their affect on my eyes only came as a coincidence--the Kenalog injections were in a shoulder and in my SI joint and the discovery of how well my eyes watered as a result was a total surprise. When he did the trigger point tests for fibro, I didn't really have pain in those spots, and the pain that I do have is not bilateral but maybe that doesn't matter.

My rheumy felt pretty strongly that I didn't have fibro, but he seemed to be quite interested in Sjogren's Syndrome. This new rheumy's website bio says he's an expert in fibro, so I guess maybe the issue here is medical biases and I should at least listen to what he has to say. I don't want to keep using steroids indefinitely, obviously, and if something else can help with the arthritis, I'm all for it. But this new doctor--who has met with me for all of 10 minutes--wants me off all meds but wants me on antidepressants; I've been on them before and they actually worsened my dryness symptoms. Not really a fan of going through that again, and to be honest, as a Ph.D. in Psych with an emphasis in Neuroscience, I am acutely aware of the overuse of antidepressants as a way to treat symptoms that don't seem to be easily explained. I guess I just worry that once again, I am being dismissed. I can't help but wonder if perhaps a conversation with my GP is a good start--I trust her and she felt that fibro was where I needed to be looking, then I might be more open. There's just something about being told that the doctor who was treating you for 4 years and seemed to be helping you is completely wrong that kind of rubs one the wrong way, ya know? :)

Hi, I do want to make a correction/ clarification with the Plaquenil. There is a risk of retinal toxicity, yes, but it is slight. And one does keep in contact with their eye doc to catch it early, should it happen. The risk is small enough that the benefits far outweigh it. Additionally, the newer forms of Plaquenil further reduce the risk. The joint pain caused by SS is not the same as is caused by RA, which is why they don't start out treating with arthritis drugs. While genetically close, they are not the same and shouldn't be treated the same.

IMHO, I would have a long talk with your GP, if you feel they listen well. I was misdiagnosed etc for many years by a rheumy who was too close minded to look past a negative RA factor and I have suffered for it. Advocating for yourself is the most important thing you can do with AI. You are the expert on your own body, including knowing what works and what does not work for you. Good luck and please keep us posted.

Ovisaries, I think you misread. I didn't say it was genetically similar to arthritis drugs. I said that RA is genetically similar to SS, though not the same. To further clarify, I didn't say it was used for RA at all. It is used for Lupus though, which is also very similar to SS, which is part of the reason it is used to treat SS. It may also help if you can take a look at the recent studies that came out regarding retinal toxicity. If I can find the link again I will post it but the outcomes are much more positive. Hope this helps.

Keep in mind too that the study showing Plaquenil being of little use only followed participants for a couple months. Plaquenil takes time to build up in the system. It doesn't generally reach full effectiveness until 4- 6 months. I'm assuming there will be further follow-up on that study at some point.

For me, Plaquenil didn't work right away, but after about 6 months I started to REALLY notice a difference, e.g., noticing that I was sleeping through the night more often. I was also told by my opthamologist that the concern over plaquenil has pretty much been lessened because the bulk of the studies show that the risk just isn't as high as they thought, and that since I had a normal baseline and don't fit into a specific risk category, I would only need plaquenil-specific check-ups every few years. I think it's exactly this type of thing that is driving me crazy--one doctor says one thing, but obviously other people have doctors who say something else. Is the practice of medicine essentially throwing something at the wall and seeing if it will stick? Sometimes I wonder if ANYONE knows anything! It seems that in the field of psychology we have to be much more consistent! :) I am not opposed to stopping plaquenil if my doctor will listen to me and if I find myself getting bad again, would be willing to admit he's wrong and put me back on, but I sure didn't get that vibe with this new guy. Does everyone have this much trouble with getting doctors to take them seriously?

Sadly, yes….one of the recurring themes you will hear here is weeding through and even educating doctors. It really is important to pay attention to you, what works, what doesn't, what triggers you…keep a list of meds, symptoms etc and if you can, get all of your bloodwork results too so you always have the correct history. If you change doctors or there is an emergency you will be glad you have it. Advocating for you can be tough in the medical world but it has to be done. Many specialists are just not that versed in SS. You will see plenty of rants here about it which is part of why its so great to be around others that have been there.

Hi eprof,

I just went to a retina specialist to be cleared for Plaquinil, and was told that the med is much less toxic and it would not be necessary for me to return for a check up for 5 years!

I was taken off Enbrel for Psoriatic Arthritis due to recurrent infections, and as expected the arthritis pain escalated, but I did NOT expect for the Sjogren's to escalate the way it did. I felt as though I was under a blow torch, I was so dry. My Rheum was stunned to hear this. Now whether it was the lack of the biologic, or the with drawl that kicked up the Sjogren's who knows.

It seems as though Plaquinil is the go to drug for Sjogren's. It's difficult to find a member here, out of 400 who have not been given it for Sjogrens. Yes, there may be 10-20% Lupus patients here, but it seems to be the standard?

This surely wasn't meant to discredit anyone, just passing it on for discussion.

eprof, as far as the new Rheum, 10 minutes is certainly not a long time to spend with a new patient, with any patient really, unless they're planning an immediate follow up after testing. Losing a trusted Dr is one of the most difficult parts of illness, you may want to give this one a little more time, if you can. Sjogren's is elusive, I was tested over and over before it came up positive, then it was off the charts high.

As for fibro, I was told I have it, but the GP, Rheum confirmed it. He related my situation (genetically predisposed, with the onslaught a rear end car accident, the third, that I could never get over) to taking a lab animal, injuring it's left hand, leaving it untreated, that pain changes the brain until that animal feels pain not only on the injured hand, but all over the body, just from being touched. I have all the trigger points though. He went on to tell me that the injury and the Psoriatic Arthritis most likely caused the Fibro, but it was the very least of my problems.

Ovisaries, what is the best med for Sjogren's in your opinion, or are we still waiting for it?

Welcome to the group. It sounds like this new rheum does not know a lot about Sjogren’s. I have heard people say that they were positive and then at a later time show as negative and back. Who knows why. Regardless I think your former doc was on the right track when he ordered Plaquenil. This drug takes up to 6 months to build a level in your blood. Some people will begin to see some relief but people should not give up on it until then.
One of my prior md’s insisted that I had fibro in addition to Sjogren’s but I did not have trigger points. I went for another opinion because I was not getting better and I was right that I did not have fibro, I had myositis.

I always recommend keeping a symptom diary. This helps establish patterns or triggers for symptoms and what treatments worked or didn’t. I find that when I walk in with a summary from my diary I have more credibility.Doctors thrive on documentation. If you do go to someone else for another opinion bring your diary and any labs.

Don’t let anyone treat you like they know better than you know your body. Example (sitting under a fan. I had one rheum tell me that I should find someone to talk to because my ANA which started positive was negative when he tested it.

Sounds like you are having a pretty rough time with your eyes. I am so sorry to hear this. I hate how dryness affects my eyes. I have all my ducts plugged but still suffer. I am scheduled every six months for recheck because of the Plaquenil. I originally thought it would be once a year but I guess it is md preference.

Not sure if the chat is on for Sunday but it will be a good chance for you to meet others and ask questions. Virtual tea will be served.i missed last Sunday but the week before I believe someone brought virtual dessert from Trader Joe’s. Sorry guys but I will miss chat on Sunday because I am doing a real TJ’s shopping trip. Will think of you as. I shop.

Again, welcome.

I guess I'm way up the creek then! I've had dry eyes for decades, dry mouth, tooth loss. I always blamed it on the air flow at work, or course allergy meds really kick it up, but as far as heat and air, at work, everything was on a blower, so that was where I really suffered. I could fill up a pretty big crater with empty eye drop bottles over the years! Those manufactures have to be some fat cats!

I'm not really one for conspiracy theories, but it seems we are getting left in the dust here as far as research and development. According to most info I've read this is the #2 autoimmune disease, and it seems like a gateway autoimmune disease? I'm sure this is very complicated research, and surely I know next to nothing about it! I just want a new drug!

My GP was telling me that they used to use gold to treat arthritis, I had never heard of that! Perhaps I should have a nightly slug of Goldschalger?

Your thoughts?

I know China is doing some impressive genetic research, they have a huge population of Sjogren's suffers. I have read that a different gene is effected in different races with Sjogren's! Not sure where that info is, buried within these pages somewhere, but if I find it I'll post it.

BTW, will the Plaquinil do anything for the Psoriatic Arthritis? I am ever hopeful since biologics are now off the table for me! Have to stay hopeful!

How do you constantly rehydrate a body anyway? eprof, sorry to hear that your eyes have bothered you so much, I have a feeling that if I were to be examined at my driest, they may want to plug mine as well. Seems they become problematic?

SK, I have had the plugs done in my eyes and sadly, for me, there is very little difference. My eyes are so dry that the plugs to hold in what moisture there is is kind of useless. LOL. I go through eye drops like crazy too. One in my bag, one at work, one next to the bed. I need to take stock out in one of those companies.

Welcome to the group Eprof. What frustration after all this time that you have to deal with and I've also heard this from other people on other Sjogrens groups where a doctor later denies we have SS. Since I read that SS goes in and out of remission for just days or weeks or sometimes months and years, I am guessing that when people test positive and then negative at a later time, this is just a short remission period for the antibodies (even though we don't feel like we are in a remission at the time). I'm glad you are so intelligent and can deal with the current Rheumy who really seems to not have enough experience at all with SS. Because of that, I don't think he can help you. I know you are in such a small town (I have a friend in a farm area of Ohio so I know what you go through with doctors), so maybe it might be worth the trip to Madison or Chicago just once a month or so to get a really experienced doctor to help you. That's what I think I would do. I would go to Yelp, though, and read reviews from current patients first for any new doctors. That saves a lot of time.

And there is the voice of reason as to 'why?'. Thanks, I needed to hear that, perhaps many of us did. Frustration can really take hold of us sometimes. Good to hear about the ebola vaccine!

Ovisaries said:

I don't know that we are being left behind SK. Basic research is a bit more general. The Rocky Mountain Labs (an NIH base lab) just down the road just sent an ebola vaccine to the military for testing. Its part of a project thst started in the 30's concerned primarily with "black measles" (which later became Rocky Mountain Spotted Fever in honor of the labs. Out of that same project has come gentically variable (but identical) mice, cures for two forms of cervical cancer, the basis of tnf treatment for arthtitis, plaqunel, and a host of other things. I wouldn't get really excited about genetics, in China or anywhere else. TheY are missing a lot of basic information. The geneticists have raised more questionns than answers. There isn't anything more genetically pure than identical twins. Yet their mothers can always tell them apart, they get hungry at different times, soil their dispers at different times and so forth, change just a bit say 2% of the gene pattern, and becomes an ape. Now one ones to apply those principles to an immune system? Named research is all keyed off basic research. The big international chemical companies are simply developing applications for known technology. Remember the second S in SS is syndrome. All we have is a group of symptoms for which we have yet to find a common cause. Other than bacterial infection the list of diseases that we can cure is very short.

Hi eprof! I was just diagnosed in May this year and all my blood work came back negative. My rheumatologist did some more tests there in the office and had me see an ophthalmologist before I came back for my next visit. My eyes were so dry he put me on steroid drops right away. I went back to see my rheumatologist and he did a lip biopsy to confirm SS. I’ve had pain and fatigue for 25+ years and that has always been my biggest complaint to the doctors. I also have swollen salivary glands that have been growing over the years and that has been brushed off by drs. I saw an ENT about it at the end of last year and he suspected SS buy when all my blood tests came back negative he told me it was my jowls sagging… Really?! I wouldn’t think jowls were firm and hard. I was so frustrated and told him so because he wasn’t willing to look into it any further. I asked for a second opinion and I’m glad I did. It is my understanding that 1/3 of SS patients have negative blood work.
I would question him/her on that. Have you ever had a lip biopsy done? Just don’t ever forget the are “practicing” medicine and they work for you. I hope you’re able to find the right dr for you again. Wishing you well!

About the pain analysis... I have had the nerve conduction tests done, only thing it really told me was mild CT. Did not even detect the Sciatica in the left leg, which is the most intolerable of the nerve pain. When the sciatica is not bothering me, I take the Lyrica sparingly, though it helps with the exposed nerves in my remaining teeth.

My bane is joint pain/bone pain! Wish I could take more NSAIDS, they help more than anything! Always have! That and Sportscreme rub!

You know, some of the PsA folks take plaquenil with good results. It really works for some. I say that even if something doesn’t work for me, that’s no reason to discount it; it may be someone else’s wonder drug.

SK said:

BTW, will the Plaquinil do anything for the Psoriatic Arthritis? I am ever hopeful since biologics are now off the table for me! Have to stay hopeful!