Hi all, I hope I can ask some advice, I'm very confused about my current situation!
I'm a 21 year old female. I'll try keep my history brief.
Aged 8, swollen, achy, wrist. Operation on my eyes to remove a foreign body (sand).
Aged 11, 8 teeth removed. Swollen, achy, stiff (synovitis) ankles.
Aged 15, dx Mono. Then extreme fatigue, low blood pressure, fainting, achyness. Over night, dry mouth (huge thirst, foamy saliva), increase in water (from 1-2 glasses a day to 10+)
Aged 17, severe b12 and foliate deficiencies. 6 months later dx with Celiac Disease.
Aged 18, dx with Post Viral Fatigue Syndrome & Fibromyalgia, Raynaud's, Hypermobile Syndrome (although no tests done).
Age 21, gradual sore, stiff, swollen joints. Over night, dry eyes (gritty, burning, need to blink lots). Nose ulcers. Fatigue. Vascular Rashes.
I'd also add that about 60-70% of my teeth have fillings.
I had some blood tests done, elevated ESR, weakly positive ANA. CRP, rheumatoid factor, anti-CCP, CBC, Ferretin normal.
My GP put me on a month course of Prednisone while I waited to see a rheumatologist. Finally got into see a rheumatologist who dismissed me (I think because my GP had already put me on Prednisone). She did Schirmer test which was normal and said unlikely to be Sjogrens because of this but she'd send me to an ophthalmologist and a dry mouth specialist. She ordered blood tests, (1 week after coming off Prednisone), everything normal except my weak positive ANA, ESR 18 (0-18) and slightly elevated white blood cells. She said I was 'pooling' saliva and could cry so it wasn't Sjogrens. She said she thought it was Fibromyalgia (although I flat out told her I disagreed, which she didn't like!)
Last week I saw a Ophthalmologist. He looked at my eyes, put the orange dye in then the green dye and said I definitely have dry eyes because of the 'level of tears' and something about how fast they break up. He said he'd except my Schirmer Test to be 0mm and couldn't explain why it wasn't. My Mum asked him what he thought was going on and he said "She has a Sjogren's, Rheumatoid Arthritis overlap, no one can call it anything else"!! He wanted to put some temporary plugs in but I said I'd stick with the artificial tear drops at the moment. He told me to come back if they weren't cutting it because I have scaring on my eyes and he doesn't want it to become permanent.
Tomorrow I'm having a bone scan done and I have my next rheumy appointment on the 26th September where they are going to do a punch biopsy of my rash. I live in New Zealand and we have limited approved medication here (including the one that starts with 'R'. I've searched to see if I can find it here, but nope). I'm still waiting to hear from the 'dry mouth specialist'.
So, that's where I'm at at the moment. I have a million questions! I'm hoping someone can help me.
Do my symptoms go with Sjogren's? Do they fit?
Can I 'say' I have Sjogren's? Does an ophthalmologist have the authority to make the diagnosis?
How do you know if your 'arthritis' symptoms are just typical Sjogren's arthritis or are RA arthritis?
Is it possible to have a Sjogrens, RA overlap?
I've heard that the Lip Biopsy is needed for the definitive diagnosis. Does this hurt? What is actually involved? Can you have a false negative? What is the best way to ensure that you get the correct result?
I find when I wear mascara my eyes feel better, is this odd?
Do people usually find Prednisone to help with the dry eyes and mouth?
My eyes are far drier than any other part of my body, is that 'normal'? And dryness isn't overly troubling, the fatigue and joint problems are the worst! What does that indicate?
The rheumatologist mentioned Plaquenil (but then said she wouldn't prescribe it at this stage), will this help with my dry eyes, mouth and fatigue as well as my joints?
The ophthalmologist said I should try and get preservative free drops. What's the difference?
Sorry to go on! I'm just sick of feeling horrible and not having answers!
Thank you so much to anyone who's able to help!
Welcome!!
You do have a lot going on, that's for sure.
I didn't see SSA & SSB in your labs. These are markers for Sjogren's. If your rheumy didn't run them because he dismissed Sjogren's, then have your GP run them.
Seeing a rheumy (or any specialist) for the first time while already on prednisone can certainly cloud the symptoms and make diagnosis harder.
I didn't quite understand what the ophthalmologist meant by "excepting" a 0 for your schirmers. Was it not 0 in actuality? If not, what was it?
Yes your symptoms can certainly fit with Sjogren's...or other AI diseases, like RA. It can be hard to identify sometimes. The SSA & SSB would be good to know. But up to 50% of people are sero-negative, so don't discount Sjogren's is they are negative. The lip biopsy is more definitive. It need to be done in a good facility with lots of experience. Yes, it can be uncomfortable (you'll hear some horror stories here), but most aren't bad. It is a small incision (numbed of course), but can lead to a small knot and/or numbness (that has been permanent in some cases). Mine still has a small knot and mildly numb but it's so small that it's not worth complaining about. If it is properly graded (looking for a certain number of lymphocytes/foci) then it is a good diagnostic test. I only suggest a lip biopsy be done IF you are sero-negative and your doctor will not treat you without a positive diagnosis. There is no sense in going through this test if your doctor treats you based upon symptoms. But it doesn't sound like your doctor is treating you just yet. I would get labs done first before jumping into the biopsy.
When you go back to the rheumy at the end of the month, make sure you're off the prednisone so the doctor can SEE the swollen joints, etc.
I'm sure others will be around to comment on some of your other questions.
Keep us posted
Welcome matildamillicent. You may find "Spoon Theory" interesting.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Hiya matildamillicent,
Your symptoms are consistent with Sjogrens. Yes it's possible to have both RA and Sjogrens. I think that's what they mean by overlap. Any medical doctor (especially a specialist) can diagnose Sjogrens. It sounds to me like your Opthalmologist is pretty knowledgeable. Eye drops with preservatives are irritating and contribute to dryness from what I understand. Joint pain from arthritis could be hard to tell apart from Sjogrens joint pain, since they are both autoimmune connective tissue diseases. Sjogrens is not as well understood as RA is but RA is known to cause joint damage if not managed carefully. http://en.wikipedia.org/wiki/Connective_tissue_disease (http://en.wikipedia.org/wiki/Connective_tissue_disease)
I was diagnosed without a lip biopsy so I don't have experience with that. My eyes are irritated by mascara. The order in which symptoms occur can vary widely from person to person, it's just random and it doesn't mean anything in particular that I know of. My symptoms began with fatigue and joint pain and I didn't experience any dryness till many years later. Dry eye was the most recent symptom that became bothersome for me. It's common for dryness in one part of the body to be more severe than the others. Many people with Sjogrens say that fatigue and pain are more difficult to cope with than dryness is. I don't know why your rheumy won't start you on Plaquenil. It can help slow the disease progression and for most people it eases at least some symptoms. If you are not a good candidate for Plaquenil, there are other medications he can prescribe for you.
There are people who are more knowledgeable than I am on this forum. They are a wealth of information and very friendly too, so lets see what they can add. I'm glad you came here to the forum today, welcome.
stephL
Sorry if I'm mistaken about this, but I have heard a few stories of an Opthalmologist being the one to make a diagnosis? :-[
Wow! Thanks so much everyone,
Anita, thank you! Tell me about it! I'm so sick of the these doctor appointments where no one will tell me the same thing twice. I go to one doctor who says it's mechanical, the next says it's Fibro, the next says it's Lupus, the next says it's drug induced Lupus, the next says Sjogrens/RA overlap! It seems the further I go away from the field of Rheumatology, the more answers I get!
I did have the SSA and SSB tests done, they were negative. She did say that she thought Prednisone had an impact on my blood tests. The rheumatologist was very annoyed I was on Prednisone.
Sorry I meant to say the ophthalmologist was EXPECTING my shirmers to be 0mm, it was 7mm after about 10minutes. But the orange dye which I think is called the Rose Bengel Staining Test showed that my eyes were dry. I have heard some horrible stories about the lip biopsy, but I guess if you had a good experience you would be complaining. I guess because my SSA and SSB were negative, a lip biopsy is the only way to know for sure. My rheumatologist won't treat me without a diagnosis or at least 'more evidence'. I'm waiting to see this dentist who specialises in dry mouth but I haven't heard back from her. I've been off the Prednisone for about 2 months and the swelling comes and goes a lot. Most days I'm not visibly swollen. I got sent to a physiotherapist who 'caught' me on a bad day and said I had lots of fluid under my knee caps. But the rheumatologists won't take her word for it. I guess that's why I'm hving the bone scan (I go and get the radiation in an hour). Thanks again.
Joe, thanks so much for that link. I have read the spoon theory before.
Thanks, stephL. I really appreciate your answers to my questions! I was thinking by overlap, he meant I don't quite meet the criteria for Sjogrens and RA separately, but I have characteristics of both. The ophthalmologist was very knowledgeable and I didn't feel like I had to prove to him how sick I am! He just got it and knew how to treat patients with respect. I'll get some preservative free drops when these ones run out. Thank you again, you answered all my questions and really helped! I feel so lost and like no doctor will take the time to explain what's really going on or try to treat my symptoms.
My aunt is a pharmacist and I asked her about Plaquenil and she didn't know why I wasn't on it yet either. It seems to have few side effects and can be helpful for some. Considering I'm on Celebrex which has been known to cause kidney failure and heart problems!
Thank you so much, I really appreciate that. I'm just trying to learn as much as I can and do all I can to feel better.
=]
My experience with the lip biopsy was not good. I still have a numb area and lump (but small). I had an infection (at the site) for a good week or two afterward, but I needed the diagnosis (which I got) and I have many other things that are worse then a little numb knot on my lip so that's why I don't complain....and would do it again if needed. Since your labs are negative and you need a confirmation to get treated, I would consider the biopsy if I were you.
However, I would ask for labs to be redone after stopping the prednisone. I would ask how long to wait for it to be completely out of your system.
Can't the bone scan be affected by the prednisone also? The scan would show inflammation and the prednisone reduces inflammation, so the scan may not be accurate. have you stopped the prednisone yet?
Let us know how the scan turns out. Hopefully he will at least start the plaquenil. It should help with your fatigue and joints.
I would not even attempt to have a lip biopsy(my opinion). You have enough symptoms with the dry eyes, mouth, etc., that you should be treated symptomatically. Like was said, the Plaquenil is the drug that is used as soon as possible to stop the autoimmune attack on the body.
It is also one of the first drugs that is used to treat RA also. Anytime you are on prednisone the chances of masking the test results is very real. Also, a person can have elevated ANA, CRP, etc one time and months later they can be normal. This does not mean that you are cured.
The blood tests are very fickle and can convert from negative to positive off and on through the course of a person's life with autoimmune. It is just the nature of the beast. Lots of time it can depend on how much a person has been drinking (hydration) also.
The eye doctors can, indeed, make a diagnosis of Sjogrens.The opthalmologists are usually internists who specialize in the eyes so they are familiar with the organs of the body. A good optometrist can also diagnose as they can be astute enough to put 2 and 2 together. In other words, dry eyes, scars on eyes, dry mouth, aches and pains, etc, fatigue---maybe it is Sjogrens.
It is nice to know if the SSA and SSB are positive, but it is not necessary. Any doctor worth his salt would be treating this symptomatically. As to why you get so many different opinions it is because the autoimmune diseases all have so many of the same symptoms. Sjogrens and lupus are second cousins and very hard to differentiate.
Many times docs are trying to give a diagnosis and may be off the first time around. It may be later down the road they begin to see a different pattern of symptoms and will change the diagnosis. Good luck and welcome to this site. Irish ;D
The "R" medicine you are trying to think of might be Restasis which is for dry eyes. I did not read the entire thread so forgive me if someone already mentioned this. Lucy
Welcome to our lives!!!! I can't add anything that hasn't been already said. But I also was seronegative but with the symptoms and history my rheumy needed something diagnostic. She had me have a salivary scan first as she didn't want me to have the lip bx if I didn't need to. It was abnormal so I was spared. I did have a lip bx that was part of a research program- more of a nuisence and I have no numbness or lump at all. I also had a punch bx of a rash that was +++ for lupus.
Stay with us and keep us up to date with your progress. We have all had issues getting diagnosed- it's a full time job.
Good luck
Anita, thanks. I'm sorry that your biopsy wasn't a good experience. Does the numbness and lump annoy you now? Or do you not notice it? I'm glad at least you got answers from your horrible experience! I'm happy to get the biopsy if it means I'll get answers. I'm sick of being in the dark about it all. Hopefully I'll get some answers too!
I think it's a good idea to retest the labs again too, but I doubt they'll redo them. I've now been off Prednisone for about 3 months. I'd assume that it'd be out of my symptom now. But if the Prednisone is still having an effect it will impact my scan. I had it this afternoon, she said I should get the results in a week. I hope it shows something so I can start some treatment. Thank you!
Irish, I'm assuming you're Irish!? If so, congrats on the rugby! I'm an Australian......!!!
I wish my doctors would see if like that. If a lip biopsy means answers and it's the only way I'll be treated, I'll do it. But it's not something I want to do. I've also seen 2 (soon to be 3) out of the 7 rheumatologists in my city. The other 4 work in the same practice and I would never get a fresh second opinion.. So if these rheumatologists won't treatment without the lip biopsy, I will do it. I agree, I think Plaquenil would help a lot and based on my symptoms, it's obvious something's going on! It seems like it has few side effects and would be so helpful! The rheumatologist seems to rely heavily on these blood tests. I've read exactly what you're saying, blood tests can change and don't always reflect what's going on and can be negative in autoimmune diseases.
I'm sure the rheumatologist will revoke all of the ophthalmologist's conclusions at my appointment. I trust that this ophthalmologist knew what he was talking about, where as the rheumatologists contradict themselves a million times. I don't think it takes a rocket scientist to put my symptoms together and draw an accurate conclusion. But the rheumatologists seem afraid to do this without the blood tests!
My SSA and SSB were negative. I agree, a diagnosis can change. That's fine with me. I was diagnosed with Fibro and I felt that accurately described my symptoms at that time, but now things have developed/changed. I said to the rheumatologist 'I don't care about the diagnosis, I just want you to treat my symptoms so I can get on with my life'. She didn't get it.. Thank you so much for your help, I really appreciate it.
eyeamdry thanks! That's what it's called. I guess it doesn't matter because I can't get it here!
theosof Thanks, I think! What is a salivary scan? I would rather that if it's going to be less invasive. Thanks so much, I hope I get some answers soon!
I am half Irish and am an american. However, my relatives in this country are in another state in Erin county. My mother was an american full blooded Irishman with 64 first cousins so the Irish influence was gret in my life..
I will PM you regarding the Restasis.
Also, the lip biopsy is not that big of a deal and I am astounded that so many people have such bad luck with them. It is painful but a tylenol off and on usually takes the big edge off. I would question the doc who is going to do one, if you need it. Ask him how many he does in a month. If he does the very little there may be someone else who can do it.
Sometimes surgeons will do them also. Also, a facial surgeon may also do them. Call around and ask questions. Irish ;D
So you probably didn't know that Australia lost to Ireland?! Haha :-[
Thanks for the PM =]
And thanks for those questions, I don't know much about this biopsy and any questions to ask are so helpful! I'm going to follow up on this lady who's meant to be the expert, if that's not a go ahead, I'll ask to be referred to the ENT department.
Thanks again.
Welcome to the group!
Has your slightly elevated white blood cells been on a upward trend? Mine was and that was what started me going to sepcialists. Sigh! Mine have either been steady "abnormal" or rising a bit. I think most of the folks here have low wbc though.
My eye dr put me on eye drops called Alrec - it is a pre-Restasis prescription eye drop. I also got the dye in the eyes too . I use a nasal rinse (netti pot) of sea salt and distilled water that helps keep my sinuses somewhat moist. When I get dry it is the mouth, eyes, nose, sore ears, sore gums and headache. :( SJS is the reason I have bad teeth now after almost perfection until 10 yrs ago.
I think any kind of dr can diagnose you if 1)he/she is smart enough and 2)willing to do the work and not dr from a textbook. You'd not believe some of the things the drs have told us Soggies! :o I was diagnosed by an immunologist and I'm pretty cut and dried with very high ANA, SS-A and SS-b and 1 & 0 on the Schirmers but it took me 6 yrs to find someone to give me the correct diagnosis.
Has the eye dr mentioned to you about cleaning your lashes right where they meet the eye? Reason I am asking is my eye dr (due to my very dry eyes now) has me use a dab of baby shampoo on a soft cloth and run it along the areas right where the eye lashes end, not the actual eye. I got gunk there and "foaming" cause my dry eyes can't filter all the gunk in the air so it ends up there. There are special wet wipes (can't think of the name) for that too.
I would not be too eager on the lip biopsy too. Don't let the dr(s) pressure you into something so they can go on a fishing expedition unless you are ok with that.
Welcome to the Group. Ask us all anything. Chances are someone here has been there, done that, had that, went through that, used that, had that test.etc etc. We are all too durn experienced. LOL ;D ;)