Hello so I have been to my first rheumatologist appointment today. I would say it went fairly ok, although there are still some unanswered questions..
My rheumatologist seemed nice although I got the sense that he as unsure on some things which has left me feeling with doubt. Anyway to cut the story short I have been diagnosed with 'fibromyalgia' with a tendency to lupus'. I took with me all my photos and explained all my symptoms. He looked at all my results which were in the 'normal' range, which is a relief in itself however doesn't help towards diagnosis. He showed me a diagram of normal at one range and lupus at the other and out me towards the lupus side but not quite there. He said that my body is fighting against itself causing these symptoms however thankfully last affected my internal organs. He then explained how other rheumatologist may well have given me the diagnosis of lupus and put me on medication however he felt there's no need for medication if there was no severe problems with my organs (he seemed very anti-drugs). I was then given the diagnosis of FM which he told me can be a diagnosis confused for lupus I asked him what my rash on my face was and he said he would say definetly resembles lupus. So to me it seems that because my blood work has come back within range that I have now been given this diagnosis however I have symptoms that indicate lupus!!???!!! So to end the appointment I have been given hydroxychloroquine to take for 6 weeks to see if it helps symptoms then to go back again in 6 months for more blood works!! I'm now left so confused?! So if i was to have blood eat done again and my ANA came back positive I'm sure I would then be rediagnosed with lupus! or if I was to develop in the 6 months problems with organs, again rediagnosed. It alp just seems like a long process with so many unanswered questions.? Had anyone else experienced this before there diagnosis with lupus? I don't know how to feel... thankyou
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Lauralulu
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Either way the hydroxy is what they use to treat Lupus, FM and most other autoimmune disorders. So, you are on the right track. Drs don't like to label you b/c it can be wrong. My diagnosis is "autoimmune - suspected lupus" -- There's always a little wiggle room!
Ask about gabapentin - it will help with your symptoms until the hydroxy kicks in. It can take months for the hydroxy to start working.
"A long process with a lot of unanswered questions" pretty much sums up the stories of everyone here, I think! We start with a provisional diagnosis and given some 'suck it and see' meds, then review. As you probably know, these auto-immune conditions are very variable and no two individuals present with exactly the same set of symptoms. So choosing a diagnostic label is not an exact science. My rheumy has already used at least three different labels for my condition in just the last 9 months.
The important thing is that the treatments aren't all that different - hydroxychloroquine and/or steroids seems to cover most things to start with.
And it sounds as though you have been listened to and taken seriously? I think that counts that as a successful first appointment!?
Hi I have hydroxychloroquine to treat my Lupus so he has given you drugs that noramaly would be given for someone with Lupus
There are so many similar symptoms between lupus and fibromyalgia.
I think it can be hard for Drs to distinguish between the two, and I also think it may be that when using diagnostic criteria if Lupus fits then you have that diagnosis, but if lupus doesn't show up in lab results you get a fibromyalgia diagnosis.
I am exactly the same as you. My rheumatologist believes I have lupus but my bloods are all negative, except for a low white count. He does believe in seronegative lupus but won't diagnose it. It was my GP who told me I have fibromyalgia, Sjogren's Syndrome and an, as yet undiagnosed, connective tissue disease. I too am on Hydroxychloroquine.
I don't know if you were told to do this but I was told to have my eyes tested before starting the Hydroxychloroquine. This is because very rarely it can cause problems with the eyes. It is to have a record of how your eyes are before you start taking it and then have them checked every 12 months.
Six weeks seems a short course. I was told it could take 3 months until I started to notice a difference. Have now been on it for 18 months and notice an improvement with some symptoms, but not all. Xx
I'm in the same boat. First set of labs all pointed to Lupus. Did a second different set and those was normal even though I had the symptoms. So she put me on Plaquenil and is giving me 3 months on the meds to see if I improve. So you aren't the only one. I know it is hard. I want a clear diagnosis either I have it or not. I now have to wait until February when I go back and tell her how I am feeling. In the meantime keep a journal of how you are feeling. The lupus meds made me break out in an itchy rash about 4 weeks in. It can happen and now I have to take Benadryl for that. Hopefully that will pass. Good luck to you and keep us updated. Please know you are not alone in figuring out this crazy disease!
I have previously been diagnosed as having fibro and what i deem to be a malar rash but at that time my ANA was negative. This was a few years ago. In October this year my ANA was taken again and this time it was positive. My GP is aware of this but has not suggested a referral to a rheumotologist. I think i will be pushing for this in my next appointment! Although i have read than neither a positive or negative ANA is conclusive of lupus so i can see why it is difficult to get a definitive diagnosis even though we dont want to have this condition. I doubt that i have organ issues as i have recently had ultrasound on all of them and all the bloods were okay...white cells a little low, and the ANA positive, low ferritin. I also have hashimotos.
I think that sounds like a positive appointment. Very few get diagnosed with Lupus without positive blood work or clear organ involvement. Same applies to primary Sjogrens and Scleroderma. RA and Vasculitis are a bit different because the diagnostic criteria are more flexible although you need swollen synovial joints and raised inflammatory markers for a diagnosis of RA. I'm unusual in that I've never been diagnosed with FM -but most with Lupus and Sjogrens and many with RA are too.
The only thing I'm a little surprised by, like Eeyore, is that they have only put you on Hydroxichloraquine for six weeks. That seems a little odd to me but anyway, do get your eyes checked first for a baseline guide of your normal as others have suggested. Hope it helps, take care and try not to fret. Your experience is very much the norm here. Twitchy x
I had some positive bloodwork for an autoimmune illness - well, I've had hashimotos for 30 years so that's not a surprise. My rheumatologist who is a gem described Lupus as a moving disease. You can have symptoms for years and then only gradually does the blood work turn positive. Or you can have positive bloodwork but never develop any symptoms. Currently I have 5 of the criteria - 2 blood results (antiphospholipid and ANA (mildly) plus 3 physical (rashes acute and chronic, small joint arthritis) plus raynauds which isn't a criteria. Fatigue. At the first appointment I only had the above symptoms plus 1 positive blood so she said she expected to call it 'lupus' after the next blood test which then confirmed APS. I was already on Xarelto for a DVT in my jugular vein
They do not want to mislabel the diagnosis so that feels like we are in limbo but the good Drs are on the watch for a future diagnosis. Plaquenil is the drug of first choice so that is good. So you are on medication! I've been on it for 3 months and it took 6 weeks to kick in and it really helps with fatigue first, then joint pain, and rashes.
The Dr only has one Lupus patient with a negative ANA and that patient has confirmed Lupus nephritis by biopsy. They do really like to have biological markers as well as symptoms.
I'm happy for you! even if you have symptoms your body is not very ill. Count your blessings some of us are not that lucky and have organ involvement :s
I just came across this on he lupus awareness Facebook page and don't think something could have been written better to explain how the majority of people seem to feel. Excellent read and made me smile
Omg that link is amazing. So well written and on target.
That was really good to read Lauralulu - thanks. For myself I was diagnosed with RA five years ago. I took this diagnosis on board along with the drugs etc but then I fell off my board after a few months. I kept climbing back on but knew in my heart it was the wrong diagnosis for me. My symptoms of a lifetime tarried much more with a multi system autoimmune disease affecting my connective tissue -nerves and tendons rather than joints..
They added on Raynauds and Sjogrens as benign secondaries but told me RA was the potentially destructive disease. I felt I had no choice but to go along with this even though, by now I knew for sure that I didn't have RA.
Then my rheum called it non erosive RA and said I could stop the drugs since they were making me so ill. But I continued to get sicker - hospitalised for four weeks last year - lots of talk of autoimmunity amongst the hospital consultants because of my high inflammation bloods and blood in my pee.
Then we moved to a new area and I was undiagnosed with everything by a new rheum -even though my inflammation levels were very high. He said my autoantibodies were negative and therefore I could not have a connective tissue disease - no leanings or anything! I went into the Mighty's undiagnosed hell gang.
Finally, in a third new hospital six months later my ANA came back clear positive with an unusual pattern and I had a lip biopsy which showed advanced primary Sjogrens's. I felt as if I'd won the lottery!
But the new rheum was stern and said that he needed to rule out non Hodgkins Lymphoma and brain involvement before deciding on possible treatments. Because I've obviously had Sjogren's Disease for a long time, he wanted to see if it had progressed to my organs as well as my tiny nerve fibres everywhere.
This is how I learnt that Sjogrens is not the relatively minor diagnosis I had previously assumed it was compared to the others. But it is a diagnosis I feel right with and can find books on ( Wallace's the Sjogrens Book for eg) and hold my head up high at last and not feel like a fake RAer or one of the shadowlanders of autoimmunity. It's taken six long years to get here and it feels okay. I'm not ecstatic because I still have a disease that many people don't know anything about, and many people with Lupus, Vasculitis and RA assume that it only causes dry eyes and mouth - which they are wrong about. It can be equally responsible for all the bad and less understood symptoms we have, whether sedondary or primary, including organ involvement, cancer, and non erosive RA. But it's harder to know what is causing what when there are other diseases in the mix.
Only those with primary Sjogrens know what it can do as a free standing disease with no real antirheumatic treatments on offer for most sufferers - so there's lots to learn from us for others with it in the mix as Sjogrens often is. And so I feel medically useful, and that's always important to me.
But I will always relate strongly to those in the shadowlands who aren't fully diagnosed the most after these long years. That, for me, was the hardest place to be that there is.
I have read quite a few posts on Healthunlocked about Lupus and wonder if I have it. BUT I had a lip biopsy last summer and it showed a focus of 3.31. My rheumy said he thought I have sarcoidosis. I was reeling after he said that because I had never even HEARD of it! I still believe I have SS, not Sarcoidosis. I also have elevated liver enzymes but they are sporadic! My muscles, tendons, and joints are all affected. I am a mess with no meds. Oh except the opioids......
Symptoms:
Itchy
Bunions with Mortons Neuroma
Neuropathy both feet and left arm
Low Thyroid(take amour)
Raynauds syndrome
High Blood pressure attack (200/105) in February of 2016-no explanation even after heart test in hospital
Weird electrical rushes in left leg
unexplained weight GAIN 25lbs!!!
Brain fog--lost memories
Roving back pain
Degenerative disc disorder
Spinal stenosis
Inflammation inside mouth (reason for lip biopsy)
VIN II (cancer of vulva)
Tinnitus
I am depressing myself with this list....to look at me you'd NEVER know.
Tracy most of us could write lists that don't sound good in black and white. And your symptoms are quite general rather than specific to any one disease I would say. You've obviously had a hard time though especially with the VIN II.
Sarcoidosis can precede Sjogrens as a diagnosis and might require steroids and heavier duty drugs than Hydroxy - but is usually an illness that can be knocked on the head with aggressive treatment. If your lip biopsy was only off track rather than positive then I think your rheumy knows what they are doing more than you or others here may realise.
Only they know how to interpret these lip biopsy results. So perhaps the reason for your six week trial is because, if tests show positive for Sarcoidosis, you will need something stronger as well rather than making you wait for months with Sarcoidosis causing damage? Maybe there is method to the rheumy's apparent madness after all?! I think this sounds much more likely.
SS would usually show up as +50 foci in at least one salivary gland. Mine was +50 in all five. You could could have SS in early stages of course but if you have Sarcoidosis it will probably require steroids adding in asap.
So let's give your rheumy the benefit of the doubt as it's their specialist area and they know how to do the detective work hopefully!
Thanks for your reply. I am brand new on here and am not the person who got the script for 6 weeks. I have gotten NO meds, not even steroids.
The pains in my legs have caused me to limp. Unexplained 'roving' painful inflammation that leaves damage to my nerves is not something I am doing well with.
Oops I beg your pardon Tracy and Lauralulu for getting in a muddle.
Tracy as you are a new person to HU I would advise you to write your own post rather than listing your symptoms here as this confused me and also means that you won't get the support and advice (or satisfaction of a good vent!) as you would if you write a post yourself. Others won't see it here to respond or comment.
I hope your rheum diagnoses and treats you very soon so you feel the benefit.
Hydroxychloroquine has a number of properties which make it useful in treating lupus, for example disease modifying properties resulting in reduction in fatigue, sun-induced flares and flares of arthritis, pleurisy, fever and it is safe in pregnancy and breast-feeding. There is some evidence that
it may reduce blood clotting (sticky blood) and it improves the outcome for mother and baby if taken in pregnancy. Unfortunately, hydroxychloroquine may take 3-6 months to
I'm sorry to hear that you are having difficulty getting a diagnosis confirmed. My colleague Fabienne has given you some great links for further information which may be helpful.
I'm surprised to hear that you have been prescribed hydroxychloroquine for 6 weeks. This treatment usually takes 3-6 months before it is effective, so I would not have expected this to be a sufficient trial period.
If you are unsatisfied with the diagnosis and treatment plan that you have been given, then you can ask your GP to refer you to a different consultant for a second opinion. It may be a good idea to ask for a referral to a rheumatologist who specialises in lupus because they have more experience in diagnosing and treating it. If you need information about any specialists in your area, please let me know whereabouts you live and I can let you know.
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so I have been to my first rheumatologist appointment today. I would say it went fairly ok, although there are still some unanswered questions..
Does anyone else have lupus and hypermobility syndrome?
lengthy struggle to get a diagnosis.
Forcing Diagnosis through deliberate Flares?
Diagnosis based on ANA and symptoms only?
Can Antibody / ds DNA/ ENA/ Lupus anticoagulant tests change from negative to positive over time?
