I've just come out of a stressful time (unavoidable family matters) and it was no surprise to have symptoms appear one by one.....a flare, I thought! I am pretty convinced now that Lupus is in my health picture too (and Antiphospholipid syndrome/Hughes syndrome)! I knew the best thing was to rest but it is not always possible, is it!? Anyway, my symptom list became more alarming and I have not had such a flare before; Raynauds and circulation dreadful, stabbing pains every now and then in the heart area, sternum really painful to touch, felt like I had 'flu, whole body ached, tingling etc.. Yesterday, the heart symptoms lessened thank goodness but they were immediately replaced by a feeling that I was going to spontaneously combust! When I went to bed last night, my nerves woke up...I felt sick, anxious and weak and I actually felt like I should be in hospital. Then, suddenly, things subsided a bit and now I feel like I am post-viral or getting over 'flu so I'm in bed for most of the day.
I went to the GP two days ago with my concerns and he said I should speak to my Rheumatologist but my Rheumatologist is on holiday! I've emailed him with everything that's happening but won't hear until the end of the week, if that.
I hate making decisions about whether or not I should take myself somewhere to get medical attention. I do not wish to make a fuss if it's not an emergency as such but I do think I need more immediate access to help. Thankfully sites like this exist....I feel better telling you all about it. Thanks for listening.
Tryfan, Does your Rhumy have a doctor on call while he is away? Maybe you could try him. I believe Jenna has the Lupus sjs overlap how did you find out for sure? And what symptoms do you have of Lupus which are not sjs? I hope you feel better. Hugs and Kissess Jonnell and Jenna
Just seen the doctor again who said my blood pressure was high and he wants me to go and have an ECG at the surgery this afternoon. Bit of a panic...
Anyway, to answer your question, the docs say I haven't got Lupus but my symptoms say otherwise. The most important feature I have is the rash on my face which does not go away and is in the shape of a butterfly. I suppose I've got to go with what they say for now.
All the best to you and your little girl.
Tryfan,
Unfortunately, there is no single test that can confirm the presents of Lupus, doctors look for a number of symptoms and base there Dx on that and any tests that they have performed. I have been convinced that I had Lupus and so have several doctors, then they changed their minds.
There is a lot of over lap between the two diseases, I also have the classic butterfly rash most of the time to some degree or another, but so do some SS patients and people that have Rosacea. I know two people that died from Lupus and I never saw either of them with the butterfly rash.
Tryfan, I am not surprised your BP is up, if you have been so worried as to wether or not you need to be in hospital ..
That must be a scary place to be...
If I were to call my GP (UK) and he thought I needed attention, he would immediately send for an Ambulance .. At the very least we have an A&E department where one can go if they feel that they cannot wait to see a Doctor during out of hours..
I hope that it was just the panic that sent your BP up and that someone will do something for you soon!
My BP flunctuates at times, and I am sure it is down to the SS, as one can't help but get downhearted with this thing..
Take care and get back to us and let us know the outcome... Dolly
Hi Tryfan
It's not unusual for SjS sufferers to have sun sensitivity and also the 'butterfly rash'. My rheumatologist says that it's not necessarily a bad thing to have a lupus/SjS overlap as sometimes it means neither disease is as rampant as it could be.
One of the lupus blood markers is often anti-dsDNA. Like Epson said though - it's not cut and dried. There are huge overlaps between lupus and SjS but lupus doesn't dry you out.
Take care - Scottie
It is strange how different docs dx lupus. Prior to seeing a good Rheumy I was told by two docs I didn't have lupus.
I have lupus and sjogrens, dx with lupus first and while no two lupus patients are the same mine has always been complex. I was dx'd by two docs (one who specializes only in lupus) but the only positive labs I had at the time were ana and anticardiolipin and along many other symptoms (photosensitivity, muscular skeletal issues, CNS issues, fatigue, circulation, etc) they made the dx, I had never had a rash on my face. Since then I have positive ssa and have had some rash but only a little along with other new symptoms.
The main thing is to get treatment for your symptoms and continue seeing a rheumatologist. It seems that with these diseases they continue to present themselves over time, adding new symptoms and blood findings. My doc does labs frequently to pick up on any abnormalities which help identify things that are always going up and down.
I wish you the best.
Hang in there.My new Rhuemy is aware of my Lupusy,as she calls them symptoms,and keeps a close eye out.I've felt I've had Lupus and have learned to trust my instincts.As long as my symptoms are being treated I don't care about the official name so much.My poor sister is going through the wringer right now with three different Rhuemys dx Lupus and then backing off.she's got no dx right now again but is on Hydroxchloroquine and has more energy.I feel bad for her because she's just starting in the search for answers and it's not going well.At least knowing what I have in symptoms helps her know she isn't crazy.
Ruby
Mine says overlap too although she will not label it (she gives me a UCTD diagnosis) because she says that my insurance will consider Lupus and Sjogren's as pre-existing conditions if I had to switch. She says as long as we can get away with it the better, unfortunately once I get any major organ involvement, she will have to smack the label on it. After she told me that I realized she was doing me a favor. Plus I'm getting treated either way.
It does get really confusing especially with these two diseases because the autoantigens (antiRo and antiLa) are so common in each as well as other autoantigens the two share. The symptoms can overlap for both.
hi, sweetie,
this is my first time to post here, and i seem to be going form one string to another. so...please excuse if i ramble here
when i first signed on i went to the post re the legislative stuff. safe, boring stuff, right? well, not me, had to find all these links to other autoimmune diseases and all their symptoms. really, i just skimmed, but it was very interesting.
i read under one of gray links after clicking on the top of the page menu about other autoimmune diseases. i read something about heart inflammation symptoms. don't remember which disease on the list it was. has to do with the tendency of the bloodvessels to become inflammed by antibodies and cells delivering stuff and the linings of the vessels -- oh, yeah, connected with peripheral neropathy -- the blood vessels get damaged. Anyway, there are three or so ways it can affect the heart -- the muscle, the sac around it, and another way, I believe. maybe something about infection/inflammation.
you may want to print it out before you decide where and when to go and who to contact re your health.
will be thinking of you. thanks for posting. i love sitting in a class and can't wait to raise my hand with, oh, oh, i've heard of this one lol
hope this is not what you needed to hear... but just in case i can help...
cul8tr
laney
Thank you all. That is a great help to seeing a bit more clearly.
Since posting, I have had a normal result from the ECG, thank goodness. However, doc wants blood test this morning and I am seeing yet another doctor because I had a burning stomach and abdomen during the night (kidney pains too just for good measure). I had taken paracetamol with aspirin (for APS) and I think it might have upset my digestion but it could also be toxicity from all the inflammation I have had recently maybe.
Also, I spoke to the Rheumatologist last night who confirmed that I should be on aspirin and take some other drug to combat stomach upset. He also said it was highly likely I was having some sort of flare and did not rule out Lupus despite, as he put it, 'classic blood tests' for Lupus. I suppose we are edging nearer and you are right that the symptoms should be treated. However, the GP yesterday was against Plaquenil because of side effects. I thought Plaquenil was relatively okay from what I had read. Mind you, he was of the opinion that I didn't have Lupus and that aspirin was the course of action. There's me sitting in his office with the most pronounced malar rash I have ever had! He did agree that I didn't look my best....!
Oh yes, GP also said he thought I had costochondritis...as you say, it doesn't need a name when you are feeling so much pain!
Got a very dry mouth at the moment but hey ho....
It is so fantastic to have support from people who understand.....I hope your day is a happy one and thanks again.
Tryfan,
Since you are on a everyday schedule with an anti-inflammatory, you really need to get your doc to get you on a PPI or the like. My doc RX Protonix for me for everyday just to protect my stomach from all the other meds I take. It's just a bonus that it helps for reflux too (thats the drug's intention) but I never had that problem really to begin with, only with certain foods. These meds can be so harsh on your stomach.
It's funny when I go over my pills with my husband which he likes me to do regularly. He says "so you take these medicines for the side effects of these other medicines?". I say "yes" and he just can't grasp his head around that LOL.
Tryfan, Just out of curiosity, have they started you on prednisone or one of the other meds in the DMARD group. Meds such as cellcept, methotrexate, imuran,etc. When you are having such strong symptoms it sure sounds like you are having a darn good autoimmune attack on your body.
I would think that something to put the fire out on the autoimmune disease would help. I would ask the doc about this. Aspirin is a good drug, but I would think it is being used for the antiphospholipid issues. Plaquenil is a good drug and it does have side effects just like all other drugs do. There can be eye issues, but these are not that frequent due to the lower dosage that is used in sjogrens. The higher dosages used in malaria are more apt to cause the eye issues.
We do have to have a baseline eye exam and several exams a year to keep on top of it.
It also sounds like you are having some issues with anxiety which is very common with autoimmune diseases. Have you talked with your doc about this and the possibility of treatment. Irish ;D
I have Lupus and Sjogrens Syndrome. I never know which is causing what!! I do know that the rashes are part of the Lupus. I didn't have it on my face, but torso. Every thing else seems to come from both. The aches, pains, fatigue come from both, dry eyes and mouth from SJS. Itchy, prickly skin, Lupus. Who knows, I try not to think about it all, take my Plaquenil (which helps both) and my Restoril to sleep and go about by business, try to live like I'm NOT dying. lol
Thank you all. I've just resurfaced from a bit of a crisis.
After the concerns of last week, I suddenly developed a new symptom of leg pain and a lump on my thigh. Knowing what I do about Antiphospholipid issues, I took myself along to the GP who performed a D-dimer test on me which proved positive for possible thrombosis. So, I suddenly found myself in a hospital bed (after about a 5 hour wait of course!).
They have x-rayed my chest, done bloods and another ECG; all of which were okay, thankfully. However, they were concerned about the leg and lung, possibly so they've put me on an anticoagulant and sent me home to inject myself every day until they can perform a VQ scan which will show either way if I have a clot I think. If I have a clot, they will put me on Warfarin for 6mths so I don't know if that will be compatible with plaquenil etc..(not on that yet anyway).
My gut feeling tells me that I had some sort of autoimmune flare which, coupled with a dodgy vascular system, went into overdrive (I described it as 'spontaneous combustion'). The heart muscle and sternum was massively inflamed I think and I am still experiencing pain every now and then. Having said as much, it does feel like it is subsiding.
Bit of a dramatic time but I am feeling much better. Don't plan on doing too much this week mind you. In some ways, a hospital visit is a blessing as you know you are in safe hands and people round you suddenly realise you need help which has been the case. It has forced me (or rather my husband) into telling people so I think the stress of hiding it will go now and I can ask for help.
Sorry about the long post....thank you so much for being there.....it was heart warming to come back to supportive messages from you all.
Hope you are having a good day,
Maryx
Mary
I'm sorry to hear that you have been so unwell. You are right about people taking more notice when you have been in hospital. It helps to validate your condition, doesn't it?
With you on the resting. I think we expect too much of our bodies, and the instinct is to try to get back to 'normal' as soon as possible, which often makes the recovery longer. Will be thinking about you.
Hugs
Kathyx
Hi Mary
I'm so sorry to hear about this. You must have been really frightened, and yet you sound so matter of fact about coping with the hospital stay, daily injections and prospect of more long-term medication. How are you feeling in yourself?
I know exactly what you mean about a hospital stay making a difference to how people view your illness. It would be so much better if they didn't require that sort of 'outside' validation before they take you seriously! But as they do - and maybe we do too because somehow it's easier to ask for help then? - it is a positive outcome from such a tough time.
Take good care of yourself and don't hurry to be back to 'normal'.
Thinking of you - Chickpea
Mary,
I'm so sorry. I'm glad you are feeling better and it feels like its subsiding. I can't even imagine how scary this all must have been for you. Take it easy and please let us know how your scan goes and your treatment. Your in my thoughts.
Des