Anyone here ever had to endure a bone scan to confirm a Sjogrens diagnoses? My rheumatologist gave me a diagnosis of Sjogrens and Raynauds 2 wks ago. The sjogrens is based on a positive eye test he performed. He never took my bloods just went with bloods from my gp which were 3 mths old and normal.
He wants me to go for a bone scan on 2nd Sep to check for inflammation to see if I have arthiritis with the dry eyes. ??? He mentioned in letter to my Gp that he thought it was "unlikely that i had any serious inflammatory disorder and thinks that Sjogrens or a similiar disorder would be the most unified diagnosis" also he wrote that "if nothing untoward shows up in bone scan, the Gp should take a conservative approach with me!" when i questioned him what this meant he said that Gp should treat me symptomatically. Im getting really bad flares with a wide range of symptoms including malar rashes.
He tells me I do not have lupus and seems very sure of it, even though I have most of the symptoms and he hasnt redone my bloods. I had to practically beg him to do my bloods again and he just scribbled a referral down on a piece of paper for me to take with me to the hospitals pathology dept to get the bloods done. He said that if inflammation shows up on the bone scan he will treat me with methotrexate that he would not recommend plaquenil. I asked what if nothing shows up in the bone scan, ill be back to square one with no treatment and no proper diagnosis. I want to go and get a second opinion with a consultant who specialises in autoimmune disorders. I feel that this guy doesnt really know much about them. He said that he hasnt heard of a lip biopsy being done to diagnose sjogrens in about 20 years! So fed up of going around in circles chasing my tail and getting no where! >:(
Hi Explorer,
Personally, I've not heard of a bone scan as a way to confirm a Sjogren's dx, but that doesn't mean it's not being done with more rheumys than just yours.
Let's look at the positives here; you have a diagnosis now, so that's good. And it seems that the rhuemy is saying that Sjogren's or something similar would be the cause for any inflammatory disorder. So he admits that could happen with someone. Let's hope you don't have problems that show in a bone scan.
Also, just because he says the GP should treat you conservatively, doesn't mean the GP must do that. If he
said they should treat you symptomatically, that sounds like a positive, too. We want our symptoms treated.
It seems you can find another specialist and get their take on it, or go with the bone scan, see what the results are and then talk with your GP about what treatments they think would be most helpful for you in particular. You may be surprised if the GP doesn't necessarily do what the Rhuemy suggests. This is just my personal take on it...I hope this helps some. ;)
Melinda
I think I just read a short article in a LEF book that Sjogrens has an impact on your bone health. The August issue of Life Extention Magazine has an interview with a researcher on R-lipoic acid and Acetyl L carnitine, articles on bone health and rheumatic diseases, and an article on Lisa OZ's book US (Doc Oz's wife). So it may be in the magazine that I am reading.
Interesting! I saw my rheumy this week. He also recommended a bone scan. I was a bit surprised and remembered that I had never made the appointment for a bone scan when my GYN ordered one last spring. I felt like when I was a teenager and my parents actually talked to each other about what I was up to!
I have had 2 previously, --OK, Way previously!--ordered by my GYN. I believe these were pertinent to menopause.
I would guess that there is new info/article and I am glads to know my rheumy stays current.
Incidently, he cut my plaquenil from 400mg/day to 200mg/day. I have decided to taper it to 400/200 on alternating days. I wonder if there is any correlation with the bone density. My weight is 125 and I know I was at a high dosage for that weight. I am a bit nervous about cutting back and suggested that I could happy eat more and gain some weight..... ::)
Summer is fading in New England; will miss the sun!
beth
Thanks for the replies,
Im not on any treatment even though i have been given a diagnosis. This rheumy thinks that there are 2 kinds of sjogrens...one with the dry eyes and mouth, and one that affects other parts of the body. That is what the bone scan is for he says to rule out inflammation that may be causing my joint and muscle pain. If the bone scan is clear, my gp is going to treat me with anti inflammatories,painkillers eyedrops etc but if something is picked up rheumy said he would start me on something like methotrexate of Rituxan. He said he would not give me plaquenil! all i want is to be treated and to ease my symptoms that are taking over my life! even with this diagnosis im still not on anything only painkillers and eyedrops which havent made a difference so far. sorry for the rant ....
I find it very weird that your Dr seems almost determined to "deny" you plaquenil. It's a mild drug and can slow progression so much, even if a person "only" has dryness issues. If you have fatigue, plaquenil helps that too! It's safer than methotrexate with less ill effects and usually Dr's have people on plaquenil first before going to that.
If I were you I don't know what I would do. I might ask my GP to prescribe it if the rheum wouldn't. Or I may find another rheum that wouldn't pooh-pooh sjs and write off the way I feel. Best of luck to you,
Kerrikins
PS.I see you mentioned rixutan in your 2nd post. Rixutan is an extremely hard core drug with serious side effects and I would seriously worry about a doctor that would want to try it before plaquenil!!!!! Definitely get another opinion if your Dr wants to put you on that after the bone scan. I may be wrong but I thought people had to be pretty bad off to take that.
I found this info on bone scans you might be interested in from the AAOS (American Assoc. of Ortho Surgeons). I was thinking he was referring you for the bone scan they use to detect osteoporosis, but maybe he is having the other kind done to look for arthritis. Most people get x-rays of hands and feet, maybe knees or shoulders that I have noticed on the boards, seems a little overboard if he doesn't think it is anything.
"Two very different kinds of tests may be called bone scans. One type tests the density of the bone and is used to diagnose osteoporosis. This type of bone scan uses narrow X-ray beams or ultrasound to see how solid the bone is. No preparation is required for this test, which takes only a few minutes and has no side effects. (See Dual-Photon Absorptiometry, Dual-Energy X-ray Absorptiometry, and Peripheral Bone Density Testing.)
The second type of bone scan is used to identify areas where there is unusually active bone formation. It is frequently used to pinpoint stress fracture sites or the presence of arthritis, infection, or cancer. About three hours before the scan, you will be given a dose of a mildly radioactive substance called "technetium" through an intravenous line (IV). This substance occurs naturally in your body and is used in the bone formation process. The bone scan itself is performed about three hours later, which gives the bone time to absorb the technetium. As you lie on a table, a special nuclear camera takes a picture of your entire body. This process takes 30 to 90 minutes. Areas of abnormal bone formation activity will appear brighter than the rest of the skeleton.
No fasting or other preparation is required. The amount of radioactivity absorbed during a technetium bone scan is minimal, and there are usually no side effects. You may feel some discomfort as the IV line is placed. Some people may feel nauseous. Tell your physician if you are or may be pregnant or are a nursing mother before you schedule this test. "
What tests did your GP run? I really think I would be looking for a second opinion if I were you. This doctors actions and comments don't quite ring true for me. I would also question not starting you on Plaquenil, saying your GP can treat you conservatively/symptomatically, but then talking about Methotrexate or Rituxin already and not running any blood tests of his own after 3 months....Something doesn't seem quite right to me. Just my opinion, but I would be wanting another opinion before starting on any treatment from this guy. Maybe talk to you GP about the care and recommendations you got from this doctor and having him refer you to a different Rheumy.
Nancy
Rituxin is definately hard core,, trust me, I know all about it,, we need to just stop putting poison in our bodys, especially if there unsure what to do and suggest trying this or that,, if I knew back then I wouldnt have went through the he** I have went through,, but I was losing ground quick and was ready to try anything,, doctors are told,, DO NO HARM,, we need to do that to ourselves too,,
I agree that Rituxin is not conservative or a good first drug to try!!
I don't think methotrexate would be the first choice either.
Most people here (& my drs all agree) start with plaquenil & take methotrexate if they are allergic to plaquenil or it doesn't work well for them.
Good luck, Carie
I see my rheummy at the Un. of Michigan Med Center this week for my 6mo check up. If he seems in a good mood, I'll ask him about the bone scan for you.
I'm sorry you're having these problems. Sigh... Why can't doctors be more compassionate.
Deb
I had bone scans prescribed on my first visit to my rheumy. He wanted to know what kind of inflammatory arthritis I had. If it was RA or something that erodes joints, he wanted to put me on an aggressive treatment like methotrexate right away to protect the joints. If it were Sjs or psoriatic arthritis, then he would be less aggressive, like plaquenil. (It was the latter). It was NOT to diagnose Sjs, though. That was bloodwork (neg) and lip biopsy (pos). Be sure to always ask the doctor what the tests will show specifically and how that might affect treatment.
Also remember Bone scans arent so benign either,, they jab you with some radioactive material and wait a hour or two to let it spread around your body, then you get the scan,, its bad enough that they keep it in a lead box before they give you the shot,,
I read this when there was just a couple of posts and decided not to say anything then. When bone scan was mentioned, I'm thinking when I had cancer, I had my whole body scanned. Then I thought this might be a little hard hitting for autoimmune disease. I didn't want to scare poster, but now see quite a few posters.
Apparently some rheumys do whole bone scans? I also think they like to get into our pockets too. Since they (or mine is) connected to arthritis, bone scans wouldn't be questioned. Lucy
Thanks guys,
its the radio active bone scan he has referred me for! :-\ on the appointment letter it says to stay away from pregnant women and children under 4 for the duration of the day....ive a toddler of 2! how am i supposed to do that! ???
It seems very extreme alright. I really dont know whether to go ahead with it or not and just go and get a second opinion. I have bad vibes about him already, i dont want him treating me
I would agree with others that Rituxan is NOT the best course of action for you and that you need a second opinion (if your bone scan is positive).
BTW, Rituxan is NOT FDA approved for sero-negative sjogren's. I have no idea how he would get your insurance to pay (and it costs thousands) base upon a positive bone scan and a positive eye test (schirmer's, I guessing). That is NOT what it is meant for. Rituxan depletes the B cell activity caused by AI disease. He needs to prove there IS an autoimmune process causing the inflammation and I would guess it needs to be much more then arthritis to get approval. Most patients receiving Rituxan have SEVERE extra-glandular activity (lungs, cardiac, GI, and neuropathy) that cannot be controlled with other meds. Good doctors would actually TRY other meds before prescribing Rituxan. This is really scary what he's suggesting.
Keep us posted.
Go get a second opinion, if they recommend the bone scan then maybe consider it. You need to talk to your GP about everything this doctor is suggesting to get his take on it too since he knows you and your medical history. I would call and cancel the bone scan if I were you!
You can always get it later if there is a good reason to get it!
Nancy
I asked my rheummy at the Un of Michigan Med Center about the bone scan. He shrugged and said that he would only order it for SjS if he saw ample symptoms to lead him to believe there was a problem -- or if he was convinced it would be a problem in the future and wanted a base image. I hope that helps.
Deb
Thanks so much for asking deb! ;) Ive decided not to go ahead with it and put the money towards a second opinion instead. The fact that he was so dismissive of me in the GP letter makes a bone scan a bit extreme!
Thanks again ;)
My rheumy is a specialist in Lupus w/a big outside practice. He donates a day to the clinic program of the county hospital. I am glad I got him. He is very knowledgable and has a good manner.
I had a bone density scan 2 years ago. He scheduled me for one this past week. It was only for my lower extremities, because that is where my problems are manifesting themselves.
I injured myself at work in 2006 and had some back x-rays. I was surprised when the doctor said "You know you have arthritis in your back and neck, don't you?" I knew I did in my knees and feet. I didn't in my back and neck, but I sure do now. I was a lot more active back then.
You should definitely get a second opinion. Try researching the Dr.s in your area on line first to finf someone.
Just another newbies thoughts!!!!