Hi I am sorry you are suffering from this very painful and handicapping condition The terminology is rather confusing as lupus pernio is certainly used in connection with scarcoidosis, not lupus, but...
I have read that 95% of those with a positive ANA do not have lupus. The higher the titre the more likely results are due to connective tissue disease especially lupus. Lower levels ( < 1:160 ) are...
Dr Franks is my hero! He specialises in skin manifestations of connective tissue diseases. Apart from being an amazingly good doctor he is so charming, friendly and always courteous. When I got into...
Hi I'd say getting your weight up was of more concern at the moment than the possibility of protein making your lupus worse. Being underweight, which might mean malnourished, can itself have serious...
Hi :) I am sorry you are having such a difficult time - not a good way to start the New Year ! I don't think your gyny is right when he says the older you get the worse the lupus gets. As far as I...
Hi I am not sure if this post is relevant since it is about hypokalemia which is the only thing I know about HCTZ causing, that's to say, depletion or shortage of potassium. Whoever prescribed it...
Hi Gekbi ( BTW neuropsychiatric lupus is the more recent medical term for CNS Lupus) I would say that the diagnosis given is generally SLE for all practical purposes but if the CNS symptoms...
I'm sorry I couldn't do the survey because those questions I could answer had no significance to my case of lupus and the significant questions weren't asked or no provision for a useful answer. A...
Marc The maximum recommended daily dose of Plaquenil is 6.5mgs per kilo, about 3 mgs per lb, of ideal body weight, not actual. The usual therapeutic dose is 400mgs a day. It might be a good idea to...
More from me Marc :) I really hope the Plaquenil does help Although Doxycycline is used for malaria it is an antibiotic. The anti malarials we talk about are Plaquenil Aralen ( chlorquine and this...
Hello again Marc I focused before on the q of eye toxicity and Plaquenil, and I am so used to talking about lupus that I clean forgot you didn't say you have lupus. Of course if the disease isn't...
Hi Marc You want to be on as low a dose of Prednisone as possible preferably none except from time to time maybe, because it risks many serious side effects. Plaquenil will NOT damage your eyes...
Hi nofit I am sorry for your photosensitivity which must make life very difficult Plaquenil is generally agreed to reduce photosensitivity a little, so that it is an extra help, but not so much that...
Hi I know exactly what you mean about worrying when taking a new medicine and think most of us have the same feelings. I have been taking Imuran for over ten years with no problems at all. I would...
Hi there I urge you to get copies of your blood test results so that you can see exactly what is going on. It is quite possible that you have an autoimmune connective tissue disease. A moderately...
Hi Sunshine Although the anti ds DNA antibodies are one of only four specific criteria for lupus they are absolutely not essential! Only about 50% of those who have lupus have these antibodies. If a...
Hi People with lupus often take Plaquenil, and secondary Sjogren's and milder sorts Sjogren's type symptoms are very common especially if we have certain antibodies. It is an important disease...
Hi FlowerWoman I take Mepacrine along with Aralen ( chloroquine) the slightly stronger version of Plaquenil. The combination is excellent for me vastly improving skin, arthralgia and fatigue & mood....
Hi Mish UCTD is a term for connective tissue disease very like lupus that has no specific for lupus or any other specific CTD. Many people can be diagnosed with lupus instead, it just depends on the...
Hello AVA As far as I can tell I haven't seen any Irish or European member posting here for ages apart from myself. It is no doubt against HW rules to post the address of other support forums and I...
Hi there I'd like to suggest you stop worrying about your exact diagnosis since it really isn't worth it. The main thing initally is to get a correct diagnosis of an autoimmune connective tissue...
Hello Morbius Methotrexate can be used for skin lupus but rarely, I'd say, whereas it is standard treatment for psoriasis. Imuran is usually preferred if more than antimalarials is needed to get...
I am sorry to hear about your daughter's heart block. It seems to me that you might have the anti-Ro (SS-A) antibodies which can cross the placenta to cause what's called neonatal lupus. The baby...
Hello Kristina I am very sorry to hear of your current plight and also your very long history of serious illness. I know a number of UK lupus patients with lupus related kidney disease. They are...
I think you should seek medical treatment as it could well be an infection needing antibiotics and some antihistamines, plus advice on the best topicals to soothe them. I don't think antimalarials...
Unfortunately the methotrexate is well known to be photosensitising. In most cases it is agreed by all the top specialists Plaquenil generally slightly reduces sensitivity but that is just an...
Please, please do not wait a week ! If fingers or toes are turning black it counts as a medical emergency. The tissue is being deprived of oxygen because the veins are constricting and reducing blood...
Hi there A positive ANA certainly does not mean lupus as it can be positive for many reasons including non rheumatic diseases such as thyroid and liver disease. It can be positive in healthy...
Hi I am sorry you are so unwell and so unhappy. Major surgery can be a trigger for lupus as it places great demands on the immune system UCTD is as valid a diagnosis as SLE. Undifferentiated...
I don't think doctors should be selling products in their offices. That is taking advantage of the vulnerability of the patient and the physician's power over patients. In other situations that is...
I am sorry that Plaquenil doesn't seem to be helping you enough but the antimalarials bring so many remarkable benefits it would be a great mistake to stop unless absolutely clinically necessary. It...
Hello :) Your are very fortunate to have a doctor who knows about the Plaquenil /Quinacrine mix. This combination was very well known for lupus and similar diseases,not just MCTD but when Quinacrine...
Hello These could be stretch marks from the Prednisone. They do not sound like anything typically associated with lupus but I am not a doctor. It's a bit surprising to me that your doctors aren't...
Hello KAS I'd like to suggest you get tested for antiphospholipid antibodies. The relevant tests are the lupus anticoagulant and for anti cardiolipins, both tested together twice at an interval of at...
Hello Shel I am sorry about your diagnosis. I wouldn't say that dry eyes goes along with tumid lupus or any of the sorts of skin lupus apart from the malar rash which is associated with SLE. However...
Hi Nicole The flaw in this is that arthralgia is not a diagnosis but a symptom. It only means joint pain and it's the cause of the joint pain that will be the diagnosis. There are many possible...
Buzz Buzz :) It's considered that UV rays can affect systemic disease activity even if there are no lupus skin symptoms or worsening of them. I'm pretty sure that has been demonstrated in some...
Hello again I do think we have to try out to find what suits us best so if you can return the make up that's a great plus, or if you can get a qualified person to help you chose shades and learn to...
Hello Lizzy There's any number of effective make ups some specially designed for camouflage and even a few specially designed for lupus Patients. I like Revlon's Colorstay- it comes in a wide range...
Beware of anybody claiming they have the only answer especially if they want your business and the services they are offering. Beware of "cures" Yes a healthy diet and suitable exercise will help...
Hello I am not a doctor but is sounds possible you need more disease modifying medicines, because of this swelling of the fingers which is a very typical symptom of MCTD. Options might be to add...
MCTD is a classification category, like all 'diagnoses', meaning doctors have decided what they are going to call SLE or UCTD or MCTD etc. Not everybody fits into a neat classification box ! anti RNP...
The AAP is not up-to-date. There have been clinical studies and years and years of clinical experience by top lupus pregnancy specialists, most notabley at major lupus pregnancy centers at Johns...
Lynniecat I am sorry for your losses This sounds like typical lupus hair loss but of course it might be something else.. It also sounds as if your lupus was active and it is not a good idea ttc when...
:) I wouldn't care how orange I was either. This combination has freed me from mild to moderate arthralgia and got rid of my severe skin problems (SCLE) as well as giving me far more energy than I...
Hello The alternative to Plaquenil is Quinacrine which can yellow the skin but this is by no means inevitable. I am very fair skinned but there is no visible yellowing on my skin despite having taken...
Hello Sheryl When the ANA is found in juvenile arthritis there is a higher risk of eye problems "An inflammation of the iris (the colored area of the eye) may occur with or without active joint...
Hello Steph Don't be scared! There a a lot of us walking around with these antiphospholipid antibodies that never affect our health. It isn't known why in maybe a third of us that has them they...
Thank you Lynnwood ! :) I was mighty puzzled where it had got to just now when you were dealing with it. Now you see it, now you don't BB...
Prednisone is used as little as possible these days because of the risk of serious side effects. Taking any medicine is a risk benefit calculation. One of the problems associated with Prednisone...