Have had several positive Ana tests over the last 10 years and now had extensive testing with my rheumatologist who assured me the last lot of tests would give them a definitive answer on lupus and as to what’s wrong with me. I have connective tissue disease, frozen shoulder and tendentious I hope I spelt that correctly have been severely depressed and unwell as I have M.E ( chronic fatigue) and fibromyalgia, reynauds disease, spondylitis, gerd and asthma to name but a few illnesses. I said to the dr do I have lupus he was vague and said your antibodies test positively so I said so then your saying I don’t have lupus why oh why won’t they say you have lupus I feel I am losing my sanity and I am fed up of feeling unwell and if it wasn’t for my son I would kill myself as it’s no life constantly I’ll. they keep you waiting months for an appointment don’t explain anything in detail and your sent back out within minutes. I could cry as my partner says your ok there’s nothing to worry about. Was informed that I Am now to start on the lupus medication which was offered to me in February and I am still waiting to start it . I have trigger thumb and am so sleep deprived and still waiting for the injections they promised to do and am going to find a lupus support group in the hopes of finding information that may help me as the medical profession are not supportive nor helpful you just find yourself with more questions and no answers why does it take forever to get treatment when they have the evidence in front of them in black and white my son is ill and has lots of similar symptoms he too is waiting to see the rheumatologist to get tests and answers done surely there has to be quicker ways to get medical help I do wonder if this is a ploy to get you to go private or to deprive you of benefits. I asked a nurse when do I start the medication and who gives it to me how much do I take etc. I was just given a leaflet on hydroxochlorine sorry I can’t spell. I am due to have a brain scan with the memory clinic and my Drs won’t give me the medication as they say it comes from the hospital so we can’t get involved. So far all that’s happened is I have sat down in an office given so little information and a leaflet and I am still no Clearer on what’s happening. could anyone offer any advice as to what I should do next thank you. Elena
Do I have lupus : Have had several positive Ana... - LUPUS UK
Do I have lupus
I can hear your frustration. We all want definite answers but with autoimmune diseases, this is not always possible. Could your doctor be saying he thinks you have a connective tissue disease but cannot determine the specific one at this time? Lupus is a type of connective tissue disease. He is prescribing a medication that is used in many systemic connective tissue diseases. It is a very confusing time, I know. Your doctor is looking at many factors — not just your ANA — to make a diagnosis. The best thing is to ask questions and try to be patient regarding diagnosis. If your doctor suspects a connective tissue disease, he will treat as necessary even without a specific name to your illness. Did the rheumatologist say he would be following you? Best of luck to you.
Thank you for your support. Yes I must be patient and eventually I should know what’s what’s wrong. Have a great weekend. Elena
Sending u a big hug!!! stay strong!
Hi Jeromicus888,
It sure sounds like you've been on a long, hard road getting to the bottom of what is going on for you physically. And we all know what a toll that takes emotionally. To have to go through the ME, fibro avenues too, while you're carrying other illnesses like asthma must be just overwhelming. Not to mention you have a child showing similar symptoms and a partner who doesn't understand how the uncertainty sends us to hell and back on a daily basis.
Did you receive the prescription for the Hydroxychloroquine, or just the brochure? What does your last Rheumatology letter say about the appointment and the medication? (That appt was in Feb?! No wonder you're fed up!)
It was also true for me that I did not get any explanation whatsoever from my Rheumatologist. I had to do so much research on my own (as you'll find many others have done on this website), but over the course of about 8 months I started piecing things together. And I found great solace, empathy and information from this website in particular. After my fist Rheum appt, I was given the Hydroxychloroquine brochure and told something very similar, that I had a high ANA and we were now just awaiting the rest of the blood results to say if one of the connective tissue disease diagnoses could be pinned down. Either Lupus, Sjogrens, Scleroderma, something undifferentiated. There are blood markers which can indicate these diagnoses, but it's much more complicated than that. For Lupus there must be several criteria met which include a number of pointed symptoms as well as blood results. But also, because you've got other medical issues, these could cloud the ability to know exactly what is going on immediately (or even for years) because there also could be several things. Autoimmune diseases tend to come in packs. For me, they found I possibly have a Mast Cell Disorder and Vasculitis as well, this after 2 biopsies which took months to arrange and more months to get the results. You may very well find out that you don't have Lupus, but have something that is still undefined. If so, do not fret, your Rheumatologist is heading down the right route of treatment (having suggested Hydroxychloroquine).
For me, once the ENA blood tests were back and one of the anti-bodies was positive (Ro+), I was then given the Hydroxychloroquine prescription. This began the next stage of finding out if I responded positively to the meds, which then indicates there is a connective tissue disease. As KayHimm says Lupus is a connective tissue disease. And what I found most interesting as I was learning about it all, was that the treatment for all of these CTDs and many other auto-immune diseases is exactly the same. That immediately took the pressure off me because I thought I needed to know the exact diagnosis to be treated correctly. But no. Hydroxy and immunosuppressants are part of a blanket treatment to stop the overactivity of the immune system, which is what all of the connective tissue diseases have in common. First they tend to start you on Hydroxychloroquine and or steroids of some kind if you are in a flare. Depending on your response, you might get prescribed further immunosuppression.
I'm afraid this is an even longer road that you have been on so far. But do hang in there. And perhaps, in a backwards kind of way, it will help to know that the GPs don't really know very much, so you can stop banging your head against a wall at their lack of support. You will need to get as much info from the Rheumatologist as you can. Be proactive at every appointment. And some very pointed questions. Take pictures and a list of your major symptoms. Leave the list with them. In time it should get easier as they get a better handle on what you don't have, so they can see more clearly what you do have.
All the very best. Do read other's experiences here. Hopefully they will shed further light for you.
Panda x
Thank you so much for your advice. I have tested positive for the blood work for llupus and dr tells me it’s not attacked my organs so that’s good. I have had pleurisy, pneumonia and a high level kidney infection within the last few years so he tells me that it’s looking like lupus. Still waiting for medication as they only have me a leaflet. They gave me a high dose injection of something which I presume is steroids as I was just so unwell at clinic in agony with bone and muscle pain. Thanks for all your advice. Cheers. Elena
Well that seems just outright wrong that you've not been given the prescription at this stage, particularly with lupus indicated blood results and all the complications with your kidneys and lungs. It might not be in your organs yet, but they seem to be playing with fire not to treat you, I think.
Perhaps you could ring the number on your Rheumatology letter? I have never called the number so far, but I did call my Rheumy's secretary once to say I had the rash she had wanted to biopsy and could she sort me out with Dermatology. She did it the next day. I didn't have to speak to her or wait for an appointment because things like rashes are really time specific and I think the Rheumatologists/Dermatologists do realise that. I'm wondering that since you are in their system that you could call them. Is there a helpline? Or a Rheumy nurse you could call to say you are concerned that you're not on the medication yet? Because once you start Hydroxy, it can take up to 6 months to make a difference.
Good luck! You do need some answers.
Panda x
Panda, would it be okay to ask which "2 biopsies" you had to go through? My rheumy tells me it is quite an undertaking and it is rarely indicated as a result. But reading what you say...maybe, people are getting these..? Hearing it took several months to get the results (!), I accolade your perseverance.
The rheumatologist told me that there was one specific blood test that if tested positive for indicates lupus as it’s not present in other blood work so I though I finally had an answer. My partner is clueless when it comes to lupus, m.e and fibromyalgia he thinks we are all hypochondriacs. If only I could give my Drs these illness I bet they would very quickly understand. They have a duty of care to patients and it’s not acceptable to be left so long without answers. I had to pay privately twice to get anywhere as Drs thought I was fine. I hope now we can move forward. I bet if I was the queen or a president I would instantly get answers. 😂. Thank you for your reply. Take care. Elena
Hi autumnsonnet,
Hmm..I'm surprised your Rheumy told you that. Maybe that's because she has to call Dermatology herself and get you into their system. ? And then they have to do the follow-up when there are delays, as was my case. Because the actual biopsy process is really a cinch. A needle for numbness like the dentist, then they cut out usually two little bits and send them for two types of analysis. A stitch per cut and that's it. About 15 minutes. It hardly hurts and it heals quickly. There's a faint scar. Oh, but it does depend on what area of your body it is. It could be a much more sensitive issue if the rash is on the face.
Some on this website have definitely been diagnosed with Lupus because of rash results. For me, it was helpful putting a finger on the potential Vasculitis that my Rheumy was suspicious about. And my results clarified that it itself was not a Lupus rash. So maybe the point about it being rarely indicated for a Lupus result is valid. I don't know. Checks and balances, it must be.
All best,
Px
Thank you for your insight o find md this sight so supportive. Have a good evening. Cheers. Elena
Your Dr. Is a very wise man. Once you are given the diagnosis of Lupus, you now have a PREEXHISTING CONDITION, and none of your symptoms will be covered.
Hi thank you for your advice. What happens when I am diagnosed with lupus and what does it mean my symptoms are not covered. Thank you. I am struggling to understand as my cognitive ability and memory is affected. Cheers. Elena
My best advice and what has helped me more than anything else by FAR, is eliminate gluten from your diet, severely limit your sugar intake, and eat to nourish your body. Every body is different, so there could be more foods affecting you, but gluten is usually a huge problem for most people with autoimmune diseases. Your doctors probably know nothing about any of that because they’re not educated on food. Just medication. What you put in your body and on your body has everything to do with your health. I’ve never had to take lupus medication because early on I decided to give changing my diet a try first. It worked amazingly. Please give it a good 30 day try! It can take weeks and even months for the gluten protein to be out of your body so it has to be 100% eliminated or it won’t work. It’s so worth it. The website for the Paleo Mom was a tremendous help to me.
Thanks for the advice as food has a huge impact on me. Have already gone gluten free as indeed it really helps. I will look into lupus and diet. Thanks again for your help. Elena
You’re welcome! Once I cut out gluten after a while other foods became a problem and I was told I had leaky gut for probably a long time. The gluten was just overpowering the other food problems until I cut it out. It has taken a lot of experimentation. Cutting out dairy for a couple years helped too. I will never add gluten back in though, I’m happy to live without it because my reaction is so horrible. The Paleo Mom (Dr Sarah Balantyne) site is all about healing autoimmune disease with food and lifestyle changes. She’s a scientist and had multiple autoimmune diseases herself, many that she healed from. She has a really strict diet called the Autoimmune Protocol. I did it for 6 weeks before gradually adding things back in 1 at a time and I couldn’t believe the changes I felt.
Thanks for the update I will now do more research into auto immune disease and food. Have a great evening. Elena
Oh I have just read your message and I first want to say your not alone in the Lupus work of things, its a tough start you have had. Like many of us you have found out the hard way unfortunately that Lupus is a mine field. I would really like to help you if I can and if you want to ask any questions you just shout them my way. I want you to know that all of us here are listening and your not alone ok.
Thank you I think I would go insane if it wasn’t for the help and support of this group. Am going to get hold of the lupus support group in my area and research on lupus too. Am off to the Drs to have a chat and see if I can get some understanding of what’s happening. I just wish that the medical profession explained it step-by-step so I had all the information it’s incredibly frustrating. Take care. Elena.
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