Hello to everyone. Thank you to Jules G. And Jules for welcoming me to the site.
Although I have had symptoms of Sjogrens for about three years, I was recently started on Plaquenil. I have some of what are considered classic symptoms: dry mouth and eyes, joint pain and fatigue. I was wondering if anyone has some of the following symptoms: swelling/pain around parotid glands, pain in front of and behind ear lobes, twitching of upper lip (everyday for last 9 months) and swelling over left lower ribs (costochondritis)? Additionally, I was told by a very well-informed ENT doctor (she shared with me that her Sister has Sjogrens) that it is more difficult to regulate your body temperature when you have Sjogrens. My hot flashes are much worse. My PCP didn’t want to put me on estrogen replacement until the rheumatologist figured out what going on. So we tried a SSRI antidepressant which made my dry mouth even more unbearable and didn’t reduce the hot flashes. My dentist said that SSRI antidepressants greatly increase teeth grinding. My teeth are wearing down. No more SSRI’S for me. Hot flashes won out.
Also, my Rheumatologist who I was referred to two months ago and was still in the process of diagnosing me is moving to Maine this month…it is not easy finding a good rheumatologist.
Hi Parched. Yeah, I also have swelling in my parotid glands. It's not super noticeable, and probably only people who know me really well would even be able to tell. But it is definitely there. My rheumatologist was able to tell right away when he first diagnosed me. I think I also get the soreness around the ears that you described. It's probably related to the glands swelling. Since one of the areas that Sjogren's attacks is your glands, then swelling and soreness would be common. Swellling of the parotid glands is a well known sign of Sjogren's. In fact, it's a weird coincidence, but since you mentioned that, I'm starting to get more sore around that area! Have any of your doctors suggested Pilocarpine? It's a medicine that can help with dry mouth. I was taking it for a while and it did help, but my insurance is giving me a hard time now for some stupid reason, and they don't want to pay for it. I just haven't felt like dealing with the hassle so I haven't bothered fighting them on it anymore. I might have to again though, because I think my glands are a little worse now.
I also have a lot of problems regulating my temperature. I often seem to swing back and forth between being too hot and getting chills. I have hypothyroidism too, so that might be contributing to the problem. I'm a male though (and I'm only 37, I don't fit the statistics at all!), so obviously I won't get some of the same experiences you have. But I think problems with temperature can be related to the Sjogren's and not necessarily just a hormonal issue. Autoimmune diseases are really weird and can do all kinds of things.
How long have you been taking Plaquenil? I take it too, and it definitely helps a lot with fatigue. I still get tired easily sometimes, and have bad days sometimes, but overall I am doing better. I have a lot more good days now. It does take a while to work, sometimes several months. I was lucky that I started noticing a difference faster than most people though.
I hope you start doing better.
Gateway....I have issues with temp regulation too. Both my rheumy and cardiologist attribute that to the SS. A lot of us have Reynauds also so not really a surprise. I forget if it was Tj or Assybish but one of them posted a really good (scientific) explanation on why that happens. It was interesting.
Parched, I get a lot of pain in the jaw and right in front of my ears from time to time. Thank goodness it just flairs up for a bit then eases up. It can be very uncomfortable. I will say that I haven't heard of Costochondritis causing swelling like that. I was hospitalized once in my early 20s for it (and still deal with it at times) but the pain was more sternum and around the rib cage. It was also sensitive to the touch. Have you asked a doc about it? As for the Plaquenil, I hope you have good luck with it. It has helped quite a bit for me, especially where the fatigue is concerned. It is so much more manageable now. My flair ups overall are also shorter and now as severe so maybe after a few months some of your others symptoms may settle. Keep us posted on how things go!
Gateway, the ENT doctor just prescribed Evoxac (cevimeline). She said that there is generic for it now. My copayment was $37. I am going to start it on my next day off just in case I experience side effects. This doctor also suggested warm compresses for the salivary gland
swelling and discomfort.
I have been taking Plaquenil for about three weeks. I do think I am already experiencing some benefits of this medication. I hope you continue to get relief with this medication. Thank you for sharing your experience and words of support.
EnjoyLife, it would be interesting to read about the scientific reasons for lack of temperature control and Sjogrens. I will do some research. The costochondritis was so painful I also ended up in the hospital a couple of months ago. My ribs are also very sensitive to touch and the pain goes around my rib cage. The doctors are not sure about the swelling. The Rheumatologist thinks I may also have rheumatoid arthritis. It would be nice to know the cause of this strange and painful issue. It is great to hear you are getting good results with plaquenil and I hope that continues. Thank you for your support and for sharing your experiences.
Hi Parched! Sorry to hear you are having such a difficult time. I also have swollen glands on sides of my neck at times. I'm also cold all the time. My hands are freezing most of the time. Not sure which is causing it or a combination of both? I have severe neuropathy and SS. Sorry to hear you are losing your Rheumy. I live in Maine and the last rheumy they referred me to cannot see me until December! Needless to say I called neuro back for another referral this will be referral #3. Frustrating. Hope you have some good luck!
Hi Ann DeLaite,
I am also sorry you are having such a difficult time. Is your neuropathy caused by SS? I have had symptoms of Reynauds for many years (my mother has it). It appears to go along with autoimmune illnesses. That is unfortunate you have to wait so long for a rheumy appointment. Some offices have a cancellation list you can ask to be placed on. Also, I have a friend who lives in Damriscotta, Maine. She has a good Rheumy. If you would like me to I could get his name. I am not sure where in Maine the Rhemy I was seeing is moving to. Her Name is Dr Saskia Cooper. I only saw her twice, and I was happy with her care. I know Maine is huge state, but I thought I would mention her name just in case. I hope you find a good rheumy soon!
Thanks Parched! Yes I believe my neuropathy and SS go together though the Dr.s say they are not sure. I would really appreciate it if you could ask your friend who his rheumy is and where they are located. At this point I'm willing to travel just about anywhere! Maine is a huge state but few Dr.s/specialists. Raynauds sounds terrible also! It must be difficult having both! They thought I had RA also as it runs in both sides of my family but so far it has not come up in my blood tests. I will also keep an eye out for your rheumy thank you for the name. I look forward to talking to you more. Hope you have a great day. Thanks again.
Hi Ann, my friend said that her Rheumatologist is retiring. However, she is seen at Rheumatology Associates in Portland. I looked up some reviews for this practice (they were very good). You might be able to get an appointment sooner because it is a group practice.
The Raynauds does not act up too often. I am seronegative for RA so far, but I have symptoms. The rheumatologist said that negative tests do not rule it out. Actually, I have learned it is important to find a rheumatologist that diagnoses patients by clinical signs in adjunct to test results. I hope you find a great doctor! Have a great day...
Hi Parched! Thank you for looking in to this for me I really appreciate it. My neuro is in Portland and tried to refer me to a rheumy in Portland but they wouldn't accept me because they are only accepting Portland patients. I'm not sure who the rheumy was though or if there is more than 1 practice in Portland. Calling my neuro Monday so I'll ask then. Hopefully there is. If not seeing if I can find a Sjogrens Specialist in Boston. My aunt is a nurse at Brigham Womens Hospital in Boston so she's looking in to it for me. Thanks again. Have a great day.
Hi Ann, my dear friend who is a nurse in the Boston area gave me the name of very good rheumatologist at Brigham and Women’s Hospital. Her name is Dr Elinor Mody and she is accepting new patients. Most of her reviews online were good. I am going to make an appointment with her soon. I hope you are doing well.
Thanks so much Parched I appreciate the info. SO much! I'll definitely be calling her. I've been having good days and bad