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mnjodette
12-19-2006, 07:06 AM
Interesting visit to U of M Rheumatology Dept yesterday. Learned a lot about the relationship between Sjogren's syndrome and lupus. Apparently (in my case) Sjogren's came first and then I developed lupus. Probably had both for quite a while. One of the things that seems to happen frequently in folks who have both is neurological involvement. In my case, that was the neuropathy in my leg. Makes me 'at risk' for more of the same.

Marycain, you mentioned Evoxac a while back for the dryness Sjogren's causes. Sure enough that's what has been prescribed. I'm also going to be on Nifedipine for Raynaud's and Bactrim to prevent infection. For now, I'll stay on prednisone, Imuran, plaquenil, neurontin and actonel as well. (I'm definintely going to have to get a bigger pill organizer! :wink: ) I'll be returning for some tests with an eye specialist and dental specialist who work specifically with people who have Sjogren's (who knew?!) They'll be doing a lip biopsy to examine some salivary glands and an MRI of my parotid gland. They took enough blood out of me to raise eyebrows in the lab. What a day - 12 hours long, with the drive to and from. Home resting today! Sorry for the long post...just had to share.

Jody

MARYCAIN
12-19-2006, 12:34 PM
Most people with lupus should not take sulfa-based antibiotics (like bactrim) because it can trigger a SEVERE flare! Plus about 30% of lupus patients are allergic to sulfa ddrugs and it can cause a life-threatening allergic reaction if you are one of the allergic ones. Even if you took bactrim safely pre-lupus - you may be allergic or sensitive now! PLEASE CHECK WITH YOUR OWN DOCTOR BEFORE TAKING THIS!!!!

MARYCAIN
12-19-2006, 01:09 PM
Jody, I wanted to post more about the Sjogrens-lupus thing, but seeing the word Bactrim in your post scared me so much I wanted to post that info quickly hoping you would see it.

This is what the LFA says about sulfa antibiotics - "...in lupus -However, the use of sulfa antibiotics to treat infections in people with lupus should be avoided whenever possible. Thirty percent of people with lupus are allergic to sulfa antibiotics. In addition, these types of antibiotics can:

increase photosensitivity
increase skin rashes
lower white blood cell counts."

from Lupus And Infections And Immunizations
www.lupus.org/education/brochures/infections.html

Maybe the doctors were concentrating on the Sjogrens and didn't think about the lupus-sulfa connection?

I am really interested in the link between the lupus, sjogrens and neuropathy - I had the lupus for a while before the Sjogrens developed, and then the neuropathy came later still. But I also have scleroderma and reynauds in the mix, so I always thought of the sjogrens as the most minor of the problems - guess maybe it's not so minor after all if it contributes to the neuropathy, which probably causes more pain than the other stuff combined. I had really good luck with the evoxac for the sjogrens - hope it works well for you too. I've tried all the differnt meds for reynauds - everything drops my blood pressure too low - luckily we don't have as much cold weather as you do! :) It's great that you'll have a dentist who actually understands sjogrens - I had to take mine a brochure from the Sjogrens Foundation to explain it. So hopefully they will have some great options for you. I am really glad this was a productive trip for you - hope you aren't too worn out.

mnjodette
12-19-2006, 01:37 PM
Wow..thanks, Marycain. I had forgotten that about sulfa drugs. I have to call the doctor's office today and I'll mention my concerns about that. Funny she would miss that. However, she does focus a lot of Sjogren's in her practice, and could've just forgotten the lupus part of my illness when she was suggesting meds.

She said the research just doesn't have an answer to why the combo of lupus and Sjogren's causes things like neuropathy. They just see a correlation. She sees that (and the potential of Sjogren's Lymphoma) as at least an equal if not greater risk than anything lupus may cause, particularly since I'm in my fifties and not likely to see any major organ involvement with my lupus.

I'll post whatever else I learn from this doc. She seem sharp...but then she did prescribe Bactrim, so maybe I'm making assumptions about her that I shouldn't!

MARYCAIN
12-19-2006, 02:00 PM
My rheumie specializes in scleroderma so I have to remind him a lot that I have scleroderma and lupus - makes it complicated because some lupus treatments are no-no in scleroderma and vice versa. And if she doesn't see a lot of lupus patients she probably didn't think about the bactrim. I took bactrim several times for UTIs with no problem pre-lupus - the first time my gynecologist prescribed it post lupus for a bladder infection - I broke out in hives and swelled up like a pumpkin. Not an experience I want you to share! And I know several others on the forum also developed sulfa allergy post lupus, so somehow the lupus makes us more sensitive.

My doctor has warned me repeatedly about the dangers of sjogrens lymphoma because I take cytoxan, which increases the risk a lot. But cellcept didn't work for me so it's cytoxan or kidney dialysis, since I have kidney and CNS involvement with the lupus, it's a more immediate threat than the possibility of developing lymphoma later. But it's good that your doctor is aware of the risk so you can be checked regularly. I wish my rheumie had been more aggressive in warning me about the dental problems with sjogrens - I'd never had dental problems before so I didn't know hpw fast your teeth can decay with no saliva and ended up having to have a lot of very expensive dental work. If I'd started on medication ealier it probably wouldn't have been so bad, so maybe it will keep you from having those problems.

peach224
12-20-2006, 10:41 AM
Thanks for your posts about Sjogren's. I have it secondary to Lupus, but it is getting progressively worse. When I am in a flare, it is horrible. I wake up in the morning and my teeth ache and my lips bleed. I have been trying very hard to use products to combat it, but it seems only to be a stop gap measure.

I am glad that Marycain caught the Bactrim reference. I have a severe allergy to sulfa drugs and anything with sulfa in it. I can't drink wine or eat from salad bars mine is so bad. Twice in my life I have been "accidentally" given sulfa drugs, and it was very very bad. I now wear a medic alert bracelet with the sulfa allergy in big letters.

Interestingly, I have now read two bits of research that say that there is a theory that lupus may be triggered by having the allergic reaction in someone who has a sulfa allergy. Of course, it is again, just a theory, but for someone like me who has no one in their family with any autoimmune disease, and no other "reason" for having developed SLE, Fibro, Raynaud's and Sjogren's, I always am looking for something.

By the way, what is Nifedipine? My doctor said there weren't any real drugs for Raynaud's?

MARYCAIN
12-20-2006, 12:31 PM
Nifedipine (procardia, atalat) is a calcium channel blocker that is sometimes prescribed for high blood pressure or heart problems like angina. It is prescribed for Reynauds because it relaxes the blood vessels that spasm in Reynauds, allowing normal blood flow. It is very effective for people who can take it, but for someone like me who has low blood pressure already, it drops the blood pressure too low because it dilates the coronary arteries too. I don't know if calcium channel blockers have a formal FDA approval for reynauuds, but they are usually the first drug prescribed when meds are used for reynauds. Amlodipine (Norvasc) is another calcium channel blocker that is sometimes prescribed for Reynauds. A lot of doctors are reluctant to prescribe meds for reynauds because they think it's more an annoyance than a serious medical problem, but people with lupus, scleroderma or sjogrens can actually have tissue damage from Reynauds attacks, so they usually need meds to prevent the problem. People who have primary Reynaud's phenomenon (with no other autoimmune disease) normally don't develop tissue damage, but people with secondary Reynauds (who do have an underlying disease) do have tissue damage. Unfortunately a lot of primary care docs don't know the difference betwwen the primary and secondary forms of the disease and don't realize that the secondary form can cause some serious health issues, like ulcerations, gangrene, or digital ischemia, where the blood flow doesn't return to the fingers. Untreated, ischemia can result in the loss of a finger. So you might have to do some research and educate your doctor about the treatments available for reynauds. I can't take calcium channel blockers, so my doc prescribes a drug called Pletal. He also prescribes a mitroglycerine paste I can use If I have a bad attack - I don't use it often because it gives me a splitting headache. In winter, I have two favorite products - "Heatbands" which are thermal wristbands (available in several colors) that keep the blood flowing into your fingers warm - and l-arginine-cream (brands like WarmCream and ThermoMax are available in most health food stores and sporting good stores) because it relaxes the blood vessels and keeps them from spasming in the cold. I also like the little instant hand warmers you can put in your pockets, but they get expensive if you use them much.

IloveHistory
12-20-2006, 04:16 PM
Hi!

I was diagnosed with Lupus today, as well as Sjogren's Syndrome and Fibromyalgia (I already had Reynaud's for a while).

However, I also have Epilepsy and was interested to see that there is a relationship with people who have both Lupus and Sjogren's Syndrome and neurological problems. Does anyone know whether the neurological problems associated with Lupus and Sjogren's Syndrome can include Epilepsy?

Thanks and keep well! :)

mnjodette
12-20-2006, 04:51 PM
I'm not sure about epilepsy and it's relationship to Sjogren's and lupus diagnosis. The doc I saw said they really don't know why there is more neurological involvement in people who have both illnesses..just that it seems to be the case.

I haven't heard back from the doc's office about the Bactrim, but I won't take the prescription. I think you hit the mark, Marycain, when you talked about your doctor being a specialist in scleroderma and forgetting about the lupus side of the picture. The doctor I saw was clearly a specialist in Sjogern's and I'm guessing she was working so hard to cover those issues, she forgot that I also have lupus. I'm grateful for your quick reply to my post so I didn't take any of the Bactrim. I see my own rheumy next week and I know she'll help me sort it all out.

I'm a little freaked about having a lip biopsy so they can examine salivary gland tissue. I went onto a Sjogren's forum site and read some pretty scary posts about that procedure. I'm not at all sure I want them to hack a hole in my lower lip just to firm a diagnosis of Sjogren's. Yikes.
I am eager to meet with a dentist and an eye doctor that really understand Sjogren's, though. It'll be good to learn what I can do to prevent all of the complications that can occur with Sjogren's.

Jody

MARYCAIN
12-20-2006, 05:19 PM
Ask your doctor about a needle biopsy instead of an incisional biopsy- it's not too painful, feels about like getting a novocaine shot at the dentist. Unfortunately the two best ways to conclusively diagnose Sjogrens are biopsy and MR sialography, which isn't very pleasant either. Some doctors diagnose Sjogrens based on symptoms and blood tests, but when you have an overlap with something like lupus it's hard for doctors to know for sure if you have sjogrens and not inflammation from lupus. But if your doctor is reasonably sure you have Sjogrens, ask whether he will treat you for it without the biopsy. Or ask about an ultrasound of your salivary glands, which won't give as much information as a biopsy but has the advantage of being non-invasive. Remember you are the patient - the doctors work for you - don't let them buffalo you into a procedure that isn't absolutely necessary just to satisfy their academic curiosity. Ask them how the results of the biopsy will affect their treatment plan - if the benefits don't seem worth it to you, then don't do it. Sometimes there are alternative tests available that doctors don't bring up because they don't do them, so always ask if there is an alternative to an invasive test.

mnjodette
12-20-2006, 05:28 PM
Thanks for the encouragement, Marycain. I will ask the doctor if the biopsy will affect her recommended treatment. Or, if there is an alternative diagnostic option that can be done. I'll base my decision on the lip biopsy on her answers. It's good to 'talk' this through. The visits to doctors can be short and overwhelming. I try to go very prepared and have my questions written down. But that doesn't help when the doctor throws lots of new info at me. Sometimes I don't think of questions until I've left the clinic.

GlassHalfFull
12-22-2006, 12:38 PM
I too was diagnosed with Sjogren's first -- but it's interesting that as a "medical" condition -- most of the problems end up not covered -- e.g. they are considered a vision insurance thing or dental. I wish someone had prescribed Exovac earlier.... An of course dental benefits top out at $1K/year -- even though this is not really a dental issue but a medical one.

Over the past 10 years I have had every tooth but one on the bottom root canaled and all of them crowned due to their demineralization -- they are incredibly brittle. I lost a few totally and many of the crowns needed posts there was so little tooth left. Similar situation on top -- I think I only have six that haven't been root canaled. Three done in the last 6 weeks of so -- crowns pending till new calendar year and more $ available.

One the bright side -- I don't have to look forward to much in dental expenses after these three are crowned and we address the remaining six teeth! But all the crowns are my natural color -- too bad you can't bleach porcelain. Hey -- and by the way -- if you do have Sjogren's -- you should avoid bleaching. My dentist told me it can make your teeth even more brittle....

MARYCAIN
12-22-2006, 12:44 PM
My dentist and rheumatologist both wrote letters to my insurance company explaining that my dental problems were a result of disease, not decay. They ended up getting a lot of mine covered under major medical, which paid more than my dental insurance would have.

GlassHalfFull
12-22-2006, 01:03 PM
It's probably worth a try!

mnjodette
12-22-2006, 07:20 PM
Yikes! Thanks for the heads up. I actually use those home whitening kits (Crest White Strips) from time to time. Won't do that anymore. I'm really hoping to avoid as much of the complications of Sjogrens as possible. There's still the possibility that I don't have Sjogren's, I guess, since there are other reasons for dry eyes, nose, mouth....... Time (and tests) will tell.

MARYCAIN
12-22-2006, 07:42 PM
Jody, when you were diagnosed with lupus, did your doctor do any additional antibody tests other than ANA? Because SS-A (or SS-Ro) and SS-B (or SS-La) are both pretty common with Sjogrens, although not everybody has them. That's why my doctor was pretty sure I had Sjogrens even before the biopsy - the dry mouth/eyes and a high level of Ro antibodies added up to Sjogrens. I also had a really dry Schirmer test.

mnjodette
12-24-2006, 05:54 PM
Yes, she did a lot of other blood tests. I don't recall the results of them all. I'm due to have a bunch of tests again here shortly. They will all mean a lot more to me now than they have in the past. I've learned so much by reading books, articles on the Internet, and on this forum. I'll know what to ask about.