I am reading and preparing for my Dermatology appt this afternoon. I need to discuss the steroids course with him, my dosage of MMF (currently 500mg x 2 a day), how long this will take to kick in, my holiday to Italy and hopefully a course of low dosage steroids to help me through this, the syrinx cyst found on my spine, etc etc.
Anyway, looking back through my last few letters from specialists and my ANA was recorded as 1 in 80. This would have been when I was on hydroxy 2 x 200mg and steroids (starting at 20mg per day and tapering off over 5 weeks).
Can anyone explain what 1 in 80 means? When I first got diagnosed I was just told I was positive - no titres given by that lab (which annoyed me hugely as it was suspected I had lupus, so a titre would have been useful at this point. And since then I have been told it is negative - I think hence my Rheumy reluctance to treat my symptoms, on my word and not bloods.
Can anyone explain?
Thank you.
Wendy
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Wendy39
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Checked my dated and when that blood was taken I was on the 400mg hydroxy and 3.5 weeks into the steroids - 20mg for 2 weeks, then 15 mg for 1 week, 10mg for 1 week and 5 for 1 week. Will this make any difference?
Good question! Please let us know how the appt went, Wendy....
only just logged on and discovered your post...am not expert enough on these sort of ANA results to reply to your ? (Instead of the more common immunofloressence measurement of ANA (IIF), my clinc always measures ANA via the less common ELISA testing system (enzyme-linked immunosorbent assay)), so am looking forward to reading replies as they come in
To me, this link seems pretty good on ANA testing generally:
Hello. Just got home. Thanks for replying. I left it a bit late to get a reply! My own fault. It is considered a positive result but a weak one - positive none the less.
Luckily, the dermies aren't bothered about it. He said it's weak. We know you have lupus. I am not questioning your diagnosis. We just need to get your meds right.
It was much more detailed than that but you know what I mean.
When I got there today, I got called in by another doctor and I do not have a poker face, he must have seen how disappointed I looked - I had been told my appt was with my Knight, I actually spoke to his secretary to confirm. Anyway, a nurse said you will see this doctor first and my Knight.
So, I had to start all over again. When were you diagnosed? What meds are you on? What are your symptoms now. The ANA was highlighted on the screen but my bloods to monitor the new MMF medication were all good. 3, weekly tests done so far.
I said i was going on holiday on Friday and I was very worried about how I was going to cope, could he give me a short course to steroids to help me through 2 weeks in a hot country. I said I was beginning to think I should never have booked it and it was a bad idea. He said he couldn't comment on that. And we had just come off steroids we wouldn't be using them again. My face fell again. This wasn't going as I had planned.
When he left the room even my daughter (poor thing - school hols - 2 boys in waiting room and her with me) said you look really sad Mum, are you alright?
So he comes back in with my Knight and a student. My Knight gets right to the point, honest, frank discussion. 1g is not enough of MMF and I've only been on it 3 weeks. We need to increase it. In his experience between 2 and 3g work. (I told him how the Prof didn't have a clue about dosage and ended up going by the info I gave him, from my Knight at last appt - then started me on 1g and arranged this appt as he said my Knight would probably change it. (At this point, my Knight covers his face with his hands, shaking his head and said, "yes Wend, thanks for that"). Will increase the MMF slowly now. I ask about steroids for holidays and he says we'll repeat your course, exactly the same, 20mg for 2 weeks and then 15mg etc - a 5 week course.
I just come out with it - I have nothing to lose - "Is this my last appt with you, as I hear you are leaving?" He says he's doing a clinic again on 13th September and he will see me then to monitor the MMF dosage and the steroids. (I know that are struggling to replace him, so it sounds like he is doing another clinic to tie up lose ends.)
Will I then have the first / new doctor I saw today? Got to be better than the Prof! But because of the tooing and froing etc and number of bodies in the room I didn't ask about following him to Cardiff or about him setting a firm treatment plan. I'll do that on 13th September.
So, it wasn't straight forward, as it never is but I got what I wanted in the end.
Plus next time I see my Rheumy, who seems to completely rely on bloods, that's my first positive since my diagnosis in 2013 - so it's obviously not under control.
Thank you for your help and support Barn Clown. I am truly grateful. Even after 2.5 years since my diagnosis, there is still so much to learn.
Am SO GLAD of your news dear Wendy: I think you've managed a vvvv stressful situation vvvv well 👍👍👍👍...and got the BEST possible result to boot 👏👏👏👏....of course I was cringing as I read parts of your reply...but cringe-moments do seem to be inevitable during these consultations (even with the vvv best medics 😉). I hope you're giving yourself a pat on the back: that result took a lot of nerve & solid preparation.
Am cooking supper as I tap in this message...must focus on our eats 🤗, but just had to check in and see if you'd replied...thanks so much & CONGRATS 🌟🌟🌟🌟 at taking a GIANT STEP in the right direction...
Thank you! I am totally shattered. Must feed the children and my hubby and then off to bed for me. I'll start my steroids tomorrow. Have a lovely evening. x
By the way, I typed that so quickly last night, it didn't all come out right. I didn't say out loud to the doctors, that the new guy had to be better than the Prof! I think that is how it may have read. No I didn't voice that. I kept that inside! Ha ha.
Hi Wendy. Your most recent ANA result would seem to be negative from what I've read. I think it's anything over 1:180 that counts for further investigations. But as you are already diagnosed and being treated I would have thought this could influence the ANA result for some people - especially while on steroid treatment. It did for me.
I know all about changing doctors - I'm soon to be seeing a new rheumy in a new hospital having been diagnosed with seronegative RA five years ago with low positive rheumatoid factor and swollen knuckle and wrist joints.
I've seen one consultant and one registrar since moving locations a year ago. The first rheumy was in a different hospital and dropped the seronegative RA diagnosis in favour of "polyarthritis unspecified"!
This was after five years on four DMARDs - all badly tolerated in the end. So he took my bloods last September and all my autoantibodies were negative although my inflammation levels were still high. He said that with no positive ANA or RF I had no connective tissue disease and if I'd really every had RA then it was presently inactive. He was okay to see me again in six months for my possible RA.
So I came off my low dose of steroids after these tests results. Now, six months later, under a new rheumy'a direction, my ANA shows up a clear positive of 1:320 (medium raised) of a nucleolar pattern that suggests scleroderma or polymyositis rather than Lupus or RA. So the registrar takes advice from my new consultant (who is about to retire!) who thinks Sjogrens is a possibility. So I had a lip biopsy a month ago which showed up positive. Bingo! I am supposedly to see this new rheumy two weeks today and then he will retire?!
If you need to re-establish your lupus diagnosis with a positive ANA then I would say that coming off steroids is the best way of getting a clear result - but you have to leave it a while for these to clear your system too. The MMF might be skewing things too as Methotrexate and Hydroxy did for my Rheumatoid Factor. It's terrible to need to keep proving yourself isn't it? We all need knights like yours but it's bad news when they retire or move on! Hope your holiday goes well.
No, I have a diagnosis. I have Subacute Cutaneous Lupus (SCLE) and that was diagnosed in November 2013 at a private Rheumy appt. I had had symptoms I think for about 5 years at that point and probably a life time of warning signs. With hindsight I would say I was in my 2nd flare at that time.
I had a positive ANA and ENA and Anti-Ro blood test - the anti-Ro is very specific for sun sensitivity and hence my SCLE diagnosis. SCLE is a sub group of SLE and DLE. The sun is my "main" issue as a cause of my symptoms and flares. This doctor prescribed the hydroxy 2 x 200mg a day.
I have then been under an NHS Rheumy since March 2014. My blood tests with her have always been negative and she always says I have no evidence of systemic illness. She was ready to discharge me until the Dermy put me on steroids and discussed an immune suppressant, and she has now made a further appt to see me.
There was a big gap in my Dermy care, (Dermatology should always be leading my care due to my SCLE diagnosis), because my health board lost a good dermy and couldn't replace her. I saw her on her last day. She dismissed my scalp issues. Then I slipped off the radar. That hospital has no dermy department now and since September 2015 I have been travelling to another hospital for Dermy care.
It was at this hospital, under my Knight, that my skin biopsy on the nape of my neck was carried out. He actually listened to me and said he could see that despite the max dosage of hydroxy I had various ongoing issues that were not being controlled. I am now, thanks to him, on MMF and just started my 2nd course of steroids this morning. He isn't bothered by the blood tests results at all.
The 1:80 is a positive ANA. Both dermies agreed that yesterday. If it's negative, it comes back negative. If it's positive you generally get a titre, (depending on what lab and test they run). It is a weak positive, but a positive none-the-less. On its' own it wouldn't give a specific diagnosis, you are right. But coupled with my ongoing skin issues, sun sensitivity and positive for Lupus skin biopsy - it gives me evidence for my Rheumy.
My fear is that when he leaves I will be dealing with my reluctant Rheumy and dermies who I feel don't really get it. I guess I am worried that they will mess with my meds or diagnosis when he goes. The Prof who I saw, said how long are you supposed to take the MMF for? How long is a piece of string. Some of the things he has said to me scare me, as they show his lack of knowledge and understanding. Like, well you need to moisturise your hands. I do moisturise. How patronising.
Anyway, I guess we have to deal with one day at a time. At least my MMF is now increasing and hopefully there will be no need for steroids when it takes full effect. And I have my holiday to look forward to now too.
Thanks for your reply. And best wishes with your new consultant and whoever follows him gives a new insight into your ongoing symptoms and gets your treatment plan sorted out. Good luck.
Oh thanks for explaining Wendy. Although I already understood that you have a diagnosis and I am not totally gemmed up on ANA numbers but understood that the drugs were helping you and this was causing the NHS rheumy professor to disbelieve your original diagnosis? Just very similar thing to my original RA diagnosis. I also have same worry with private endo and NHS re hypothyroidism - private guy was a bit of a knight for me. Will NHS one be though?!
But my point is that steroids and immunosuppressants can and do change the immunology profile by masking the true picture. This doesn't matter when we have people who already know we have a disease because they diagnosed it. But as soon as different doctors come in with different specialisms it becomes a real problem for many of us. Endless flagging uphold test results etc!
Add in that you are having to go to a different dermatology clinic to your main hospital and things can just go from bad to worse! I'm the other way round to you and after a lifetime of severe Eczema and full alopecia I have very few manifestations on my skin these days (post meno). So dermatologists have been either dismissive or else diagnosed crazy stuff like scurvy. So the opposite of knights for me! But my neuro presentation of Sjogren's is unusual so I'm sure I would struggle to prove it is my primary disease if I had to again with a whole new team. Fortunately they can't really argue with our biopsy results as these are fact same as blood or X-Ray's.
Is the rheumy relying on ANA alone? Your initial diagnosis would have been made on multiple factors including blood and physical symtoms. Did you test positive for anti-dsDNA? I don't think having a weakly positive ANA test after you have started meds is any reason to say you do not have lupus after all. My blood fluctuate quite a bit. My rheumy says they treat me based on symptoms not based on bloods as they can fluctuate and do not always reflect how a person is feeling. Perhaps on the 13th you should tell your Knight how his diagnosis has been questioned by the other docotr and ask him to specifically list the criteria used to diagnose you initially in a letter to show whomever is your future doctor.
Thanks for your reply. I will keep this short as I have just replied at length (I am not one for short replies and messages on here!)
But yes, my NHS Rheumy didn't diagnose me, I saw a private rheumy and he diagosed me and put me on the hydroxy. The NHS one took over some 4 months later.
I often think that if I had had to wait to see her those extra 4 months without a diagnosis or meds, I don't know how poorly I would have ended up. Maybe 4 months from positive bloods and diagnosis by your GP is a normal wait for a rheumy appt. I don't know.
I also wonder whether she would have been so quick with a diagnosis and prescribing meds. I guess I will never know.
Luckily, my Knight, (who is very sadly leaving) has listened to me and done the biopsy and got a positive test for that and he isn't relying on the bloods at all.
My fear is him leaving me in the hands of a dermy who doesn't get it like he does.
I know that I am not alone with these issues and fears. But I have no option now. My private medical insurance (through my husbands job) will not monitor a chronic condition and furthermore when I asked them recently to fund an appointment either at the specialist hospital in Bath or London, they refused, because I had had symptoms before diagnosis in 2013.
I definitely need to either follow my Knight or get him to write a thorough treatment plan for his replacement.
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Feel very demoralised
All very new to me!
Chest problems and Lupus
