Positive ANF test

[Kate16]

Hi, im looking for some advice please. After being housebound for two years with severe me/cfs, last week i got a 'very positive' result from an ANF (ANA) test. Ive also had an Anti DNA test done but havent heard back yet. Im seeing a consultant next week but am scared to death of what they might say. Ive slowly been coming to terms with me/cfs and the devastating impact it has had on my and my families lives but ive (stupidly!) Googled Lupus and now am a nervous wreck.

[jayfer]

Hi, don't worry, if it is lupus and you are put on medication you may feel much better than you have for a while. There are different types of lupus so reading generic info will not help. Before being diagnosed with sle I worked with physical disability social work team. The people I knew with lupus were wheelchair users, had stomas etc. I was devastated when diagnosed with it but mine is mild in that no organ involvement. I live alone , had 2 jobs i loved and was really worried, but 7 yrs later here I am, still managing my home alone, although not working. Worrying will only make your symptoms worse, and you can't change the outcome of your diagnosis so think positive. Hope all goes well

[Kate16 in reply to jayfer]

Hi Jayfer, im sorry to hear you have Lupus but im glad that you are able to manage it. Youre right, i'll try not to worry. Thanks

[baba]

Lots of useful information on Lupus UK main website.

lupusuk.org.uk/

[Kate16]

Thanks Baba

[MandaM]

Hi Kate16, I too read up on the internet when I was tested for sle of the kidneys! That's what I thought I had and hadn't heard of this kidney disease before. Well I didn't have sle of the kidneys but sle with kidney involvement! If got it slightly wrong. The internet told me with a Lupus diagnosis id be dead in 5 years but here i am 15 years on and alive and kicking! Yes i lost my kidneys and have had a transplant almost 10 years now. Yes it's doing a good job of trying to destroy my eyes, my skins a mess, so very sore, rashy, itchy and dryer than the Sahara desert, my lower arms tear easily, yes I feel ill every day and I'm depressed and fat, once in a blue moon my hair falls out in patches,but wigs are fun and fab! Im extremely light sensitive with my eyes and the sun makes me ill for months after exposure. My lungs are rubbish, seems ive developed a heart murmur too. The meds cause alot of the problems. I'm here though and no matter how fatigued, I'll, rough as chuff I feel I still get up to go to work 5 hours each day, today being a 6 day week for me. Thank God for a patient and very helpful hubby who brings me brekkie in bed every day and runs my morning bath and kicks my butt out of bed. Lupus often isn't a picnic in the park for a lot of people, some are lucky and it barely affects them. It's about being realistic, being very pushy with your GP and consultants in making sure you get the referrals you need, blood tests, scans etc. Make sure your voice is heard. This is a great place for advice and support, remember we Lupies are mostly all different with our ailments. Hope all goes well for you Kate16. X

[mariearmstrong in reply to MandaM]

wow, you have had a kidney transplant....both or one? I need to know, I up for dialysis next on the list if I don't have good recovery of nephritis over the next year. I love your attitude tho! lupus can wait, I have a life to live! hang in there despite the issues, life first. you say the meds cause a lot of the problems, what do you take?

[MandaM in reply to mariearmstrong]

Hi, ok the nasties but necessaries are Prednisolone (steroids) be prepared for how much weight will pile on, FAST, you could develop a buffalo hump at the top of your spine, your face gets rounder and a bit hairier, and you could become a bit grrrr, just for starters on steroids but they are a necessary evil and you should get down eventually to a low maintenance dose, you might possibly not get that added weight off, i'm 20 kgs heavier and it will not go! There are lots of other bad things with steroids but they will keep you well in other aspects. I'm on Immune suppression, Prograf (Tacrolimus) and Mycophenalate. You will be at higher risks from skin and other cancers from these meds and will have to have 2 yearly skin checks by a dermatologist. Depending on your age maybe an earlier mammogram than usual. You may have to have a statin to keep your blood vessels clear of fats. I have 2 types of blood pressure pills, and some other stuff. You only get the one kidney given to you, its all you need. Was in hospital and home in 5 days after having a live unrelated transplant from a friend. You will be too and fro to the transplant hospital VERY frequently, most days to start with and having blood tests each time to check your function and levels of immune suppression. Eventually if you are problem free the appointments get less and less and you can get your blood tests done nearer to home. You will look lovely and pink cheeked and be feeling a lot better than you did before. I was told the day after having my transplant by a nurse that don't think my kidney is safe as the Lupus could get this one too. I thought charming but it's only the truth, better to know this. You will be swopping one set of problems on dialysis for different ones with a transplant, it's not all roses around the door, but you are alive and free from the dialysis palaver. I'm coming up for 10 years post transplant, no rejections. It's really important to drink, they say 3 litres a day!!! Dehydration will cause your kidney function to decline RAPIDLY, so if you are poorly with bad diarrhoea and sickness, get to A&E and on a drip. Happened to me twice. Sorry if a bit jumbled and straight to the point, I don't believe in sugar coating, that would be so dishonest. Oh and the only banned food/drink will be grapefruit, no great loss lol.

[SarahHeney]

Don't be nervous. There are all sorts of medications used for lupus which might actually make you feel better than you have in a long time. Also I am sure the consultant will check your Vit D levels and many of us with Lupus have severe Vit D deficiency. The prescription Vit D can help hugely with the narcoleptic type fatigue that comes with it and also feeling of deep bone pain particularly in the thighs. Although not the best diagnosis I think that understanding of it by most decent reumatologists and researchers is streets ahead of understanding of CFS/ME. So although you will be starting from scratch again, there are some positives to the situation, and a real chance that you may get effective treatment and feel a lot better than you have been doing. Good luck on your continued journey xx

[BonnieSue]

I was diagnosed with lupus about 15 years ago. I have so many other diagnoses I can't tell if the SLE bothers me at all. My fibromyalgia pain had dominated all of my other problems for years. I tried something that really worked for me: I quit the rat race and moved into the slow lane.

I gave up my perfectionist desires. I no longer "own" how my entire house looks. It's everyone's responsibility, not just mine. It's my hubby who makes most of the clutter and messes. I am not his servant and would go crazy picking up after him. I do it sometimes, not always. I have tons of paperwork and phoning that ties up my days. I have lots of deadlines to meet. But I no longer let them rule over me. I relax when my aches tell me to. I'm late for some things like taxes if need be. Nothing happens as long as the gov't. owes us. (USA) I found out I have 2 years to file to get my money refunded. So what's the rush? You might be surprised at the number of things you can do in a more relaxed manner. Once you learn to take it easy, you hit a point where you're no longer in such pain every day. THAT'S the payoff!

I've found that once I got my attitude in a relaxed mode while still handling what I have to, and I'm in so much less pain for a year or so, I found myself stepping up what I could handle without any additional pain! I carried what I learned over into a somewhat busier schedule and still kept my peace and didn't have the tension and pain increase!! I take "peace" breaks throughout the day...just stop what I'm doing and take a break to have a small meal and read something not business related or some scripture...something uplifting or fun. That breaks the buildup of tension I believe. I have a lot of interruptions and that's probably good in a way. It provides a change of pace and I have to get up and down a lot. I'm not sitting for long in one place unless it's late at night. Which is secretly what I prefer.

Anyway, I've cut my pain from an 8 out of 10 to a 1 out of 10 by doing what I've described here. My 2 hr. neuromuscular massages are now not needed and I'm cutting back on them in frequency and length of time. I never would have thought it possible. Try it, you might like it!

[mariearmstrong in reply to BonnieSue]

wow! you've done great girl! you make it 'your own' you make yourself a priority. these are strong attitudes! but you don't mention the other conditions you have or the meds you have tried, or are on...and im more curious about your story

[BonnieSue in reply to mariearmstrong]

Yes, I forgot those because I don't like how long the lists are and it's depressing to think about them as I list them. Some diagnoses: lupus, fibromyalgia, osteoarthritis, PsA, psoriasis, rosacea + other dermatological problems, sleep apnea, herniated and bulging spinal discs, DDD, some spinal stenosis, etc, neuropathy in my arms, hands and feet, Bipolar disorder (hypomania), GAD, and more.

Meds are extensive. I'll mention sulfasalazine, leflunamide, hydroxychloroquine, prolia injections, quetiapine, clonazepam, ESIs, gabapentin, topamax, etc. I'm out of time, but I hope this fills you in on what you wanted to know.

[Freckle1000]

It's possible that you're me/cfs were a misdiagnosis and instead has been an entirely treatable inflammatory condition. With propper treatment you might be entering a much brighter new life and future.

Most people have mild forms of Lupus & with proper treatment lead next to normal lives. This is especially true now with newer modern treatments.

[Paul_Howard Partner LUPUS UK]

Hi Kate16,

I can understand your anxiety during this uncertain time. If you are reading up about lupus I would encourage you to stick to reputable sources of information (LUPUS UK, NHS Choices or Lupus Foundation of America) as there is still quite a lot of incorrect and outdated information out there. Please bear in mind that lupus is an incredibly variable condition which doesn't present itself in the same way between two patients. Therefore it is best not to get to worried about cases that you might read about because there is no certainty that you would experience the same symptoms or the same severity if you did turn out to have lupus.

If you would like some good information about lupus and how it is diagnosed you can request or download our free info pack at lupusuk.org.uk/contact-us/

Good luck with your appointment next week. Please let us know how you get on.

[Kate16]

MandaM, Sarah Heney,Suesz,Freckle and Paul Howard,

Thank you all so very much for your responses. You have given me a lot of reassurance. My appointment was cancelled this morning and my new one is at the end of Jan but i will let you know how it goes. Sorry i cant respond individually im struggling to type today.

I hope you all gave a peaceful Christmas,

Kate x

[MandaM in reply to Kate16]

Best of luck hun. What a nuisance your appointment being cancelled when all you need is to know. Have a very Happy Christmas, don't let it ruin the festive season. Afterall the Lupus will be there every day of your life and Christmas is but one or two days, so eat, drink and be merry if that's what you want and also use the time to veg out and rest watching inane Xmas tv whilst eating a few naughty, fattening things! x

[Maya23]

Hi Kate

Thank goodness for a forum like this to help ease our worries and share our burdens! I too was diagnosed with ME for several years before I got a Lupus diagnosis. I still have no idea whether it was a wrong diagnosis (was it lupus all along?) or not, but it's all very similar. With lupus perhaps I have slightly more pronounced joint pain than I used to get while it was called ME - and a positive ANA (which is currently negative).

I found the diagnosis of lupus very troubling and it sent me into a panic for quite a while, but eventually I calmed down when I realised I was very unlikely to get any organ involvement. For me my main symptoms are joint pain, tenderness/burning/stiffness in my arms, legs and feet, fatigue, brain fog at times, some nerve pain, and headaches.

You may be lucky enough to find that one of the lupus drugs gives you some relief. I've not been so lucky with drugs so I do my best managing it with pacing, gluten free/sugar free diet, anti-inflam herbs and pain killers.

Try not to worry, but if you do feel freaked out, just write down all your concerns so that you can go through them with your consultant.

Best of luck

X

[Kate16]

Hi Dryad,

Youve no idea how glad i am to have found this forum! Im sorry youre suffering from this horrible condition and thank you for taking the time to reply. I think its the thought of there being organ involvement thats freaking me out. Your symptoms sound very similar to mine

[Kate16]

oops sent that too early!

Im on a sugar free/dairy free/egg free diet at the moment which seems to help a little.

Its such a muddle isnt it. Im starting to wonder if ive had this most of my life and didnt realise. Thanks for the suggestion to write down my questions. I'll do that tomorrow.

Best wishes Kate x

[Maya23 in reply to Kate16]

Yes I found cutting out sugar really made a difference - and I'm now very gluten sensitive so I need to avoid that otherwise I get a very sore tummy for days and increased inflammation everywhere (and flu like aches). Have you looked into 'Leaky gut syndrome'? There's quite a lot out there about it in the world of Functional Medicine - it is believed that many of these kind of conditions/diseases could be caused by the gut wall being damaged. I try to eat things that have a healing effect on the gut lining, such as fermented foods (kefir, sauerkraut, bio-yoghurt) and bone broths. It's good to have something positive to focus on - it can feel rather scary having a new diagnosis, but being able to do things to help yourself feels empowering.

best wishes

x

[Kate16 in reply to Maya23]

Hi Dryad, ive def got something going on with my digestion and i have read about leaky gut syndrome. My Dr says it doesnt exist but im not sure hes right. Some of the info really makes sense. I tried sauerkraut but it started stomach pain which was disappointing. Something is causing inflammation tho but cant discover what it is. I get the flu/aches/poisoned feeling. Urgh. Its frustrating to say the least. Thanks

Take care, kate

[Maya23 in reply to Kate16]

I'd recommend paying for a nutritional therapist to guide you through an elimination diet so that you can find out which foods you are reacting to. It's not an easy path, but may yield some helpful results and help you manage your symptoms. Best of luck x

[Kate16 in reply to Maya23]

Thanks, thats a good idea. Its difficult trying to do it myself and possibly missing out on nutrients which is the last thing i need. I'll look into that Dryad.

Hope you have a good week. x

[mariearmstrong]

what kind of drugs are you on with me/cfs, and what does that stand for? and do you have a rheumatologist for these conditions already? or other specialists? lupus loves negative fearful angry feelings, that gives it the green light. so now is not the time to freak out. just be patient and see all the specialists and talk about the drugs. or you may opt to wing it for a year and see how it feels and reacts to you. sometimes in the beginning, lupus is mild, flareups occasionally, and some people tolerate it, but also get to know it a little better. the organs are important as it will try to inflame each of those also. that's when you get more serious with it. good luck and keep us posted

[Paul_Howard Partner LUPUS UK in reply to mariearmstrong]

I would not encourage people to go against advice from their consultants and 'wing it' without treatment. It is important to bear in mind that lupus is a complicated and unpredictable illness that can have very serious, long-term effects on health. By leaving lupus untreated when not in remission there is a risk of damage to organs such as the kidneys, which will often be symptomless until it is quite advanced.

[MandaM in reply to Paul_Howard]

Totally agree Paul, NEVER go without your prescribed meds. I have a kidney transplant and have been told of how some patients feel so well after transplant that they stupidly think they no longer need to take the very meds that keep your body from rejecting your gift of life. Result, lost transplant! Paul can I ask a question here... nobody specifically looks after me for my SLE, diagnosed by a renal consultant back in 2000. I occasionally have a blood test for ANAs if I remember to ask. Im in South East UK. Should I be asking for a referral to someone, somewhere, and if so who and where please? What tests should I be having regarding the Lupus and how often? Thank you.

[Paul_Howard Partner LUPUS UK in reply to MandaM]

Hi MandaM,

I'm surprised that your care isn't being supervised by a rheumatologist. They are the specialists that usually monitor patients with lupus and make any recommendations or adjustments to treatment. We have a factsheet called, 'LUPUS: A Guide for Patients' with quite a lot of information, including which tests are regularly used in monitoring. You can download a copy at lupusuk.org.uk/publications/ or if you send me a private message or email [e-mail] with your name and address then I can put one in the post for you.

With regards to where you should seek a referral to, I'm afraid I can't make any recommendations. There aren't really any lupus specialists who are known to us in the South East outside of London, but that doesn't mean that there aren't excellent rheumatologists around there.

[MandaM]

Hi Paul thank you. I saw a rheum in 2014 but the wait for the next appointment to see him is during early 2016!!! Demand is outstripping appointments. I will download at work the info plus the info for employers too which may help them understand my problem with extreme light sensitivity.

[Kate16]

Hi, i thought id update with my test results. After having a positive ana of 1:640 i have just had a negative (or extremely low) anti dna result. My muscle weakness is worse every day and im getting depressed due to the fear think. Its my tongue weakness thats frightening me most. Any thoughts? Scared of what you might say tho : (