first Rheumatology appointment today

[patmackfin]

I can't find my original post to reply/add to but anyway.... I just got back from my first Rheumatology appointment.(I am ANA positive 1:640 for years on 2 tests) negative for everything else he says although I have dsDNA and ENA in tiny amounts. so todays appointment in and out in 20 minutes, nice enough doctor, moved my arms and legs around a bit, said my neck muscles are very tight(which I know, I had 14 physio appointments in 8 months) .He gave me two cortisone shots in my neck(unexpected) and started me on a trial of Hydroxychloroquine.I am to go back in 3 months. He said (if I understand correctly) if I find great improvement on these pills it COULD be Lupus, otherwise he thinks it's Fibromyalgia . Any thoughts? thanks guys X

I may go over to the fibro page and see what's what

P.S. I also have Pernicious Anemia ,diagnosed in 2015,self treating with frequent injections at home.

[HedgeEnd]

I find that very interesting as am currently on a 6 month trial of hydroxy and I think my rheumy said a similar thing, but I found the whole appointment very confusing so I'm not sure. He spent the whole appointment saying I had fibro. Then, at the very end, he muttered something about possible lupus/uctd/mctd and put me on a trial of hydroxy and practically pushed me out the door!

My ANA is also 1:640. I have a positive ENA panel but each of the antigens in the panel are negative, which, after hours of research, I THINK means several of them are almost positive but not quite. They test for 6 and say, for example, each individual one has to be say 10 or above to be positive, but to be a positive panel the total of all 6 has to be 50 (depending on each lab's reference ranges) so each one could be say 8 or 9 giving a total of 50. I think this makes it even harder to determine what I have! You may be in a similar position. Hope the hydroxy helps.

[patmackfin in reply to HedgeEnd]

Hi Hedge End,

yeah looks like this is going to be a journey. After years of been fobbed off I'm just glad that he's taken the reigns and I will have a Go-To person going forward.

I suppose in a way, it's his problem now. Isn't Hydroxy how they treat Lupus anyway?

It's great to have somewhere like here for advice and support. Watch this space.

good luck to you too.

[Hidden]

My ANA isn’t as high and has gone down since I was on Mycophenolate and my joint pain in hands has gone. I think perhaps the fluctuations in ANA are not particularly significant once you have a diagnosed rheumatic disease.

I also found I have an equivocal ENA antibody pointing to a type of Scleroderma. And I had a previous diagnosis of RA due to high inflammation plus a few raised immunoglobulins and positive lip biopsy result for Sjögren’s. But when I asked about equivocal antibodies someone on the Scleroderma HU was very dismissive so I guess it’s only relevant if you have very compelling symptoms as well.

I must say that it’s very possible to have +ANA with any rheumatic disease, so not necessarily Lupus related. 70% of those with Sjögren’s have +ANA even if their Ro and La negative. So I would recommend keeping an open mind about Lups specifically. But I personally would be very reluctant to accept a diagnosis of Fibromyalgia on its own witn a consistently positive ANA and symptoms that tarry with a connective tissue disease. I hope the Hydroxy works well. 😏

[patmackfin in reply to Hidden]

Thanks twitchytoes,

Does Fibromyalgia cause a positive ANA? I don't think so. So , yes I have a feeling it's not over yet. I will take this hydroxy and see how it goes.

My positive ANA hasn't changed 2015-2018, then again I haven't been on anything, would this fluctuate on it's own normally( meaning untreated?) My ENA went from 0.2 to 0.1 , I don't know why. I will keep notes and see how it goes. As long as I feel better I can wait EVEN longer for a definite diagnosis. Thanks for your input.

.... the confusion and frustration continues

[Hidden in reply to patmackfin]

Fibro doesn’t cause an any blood signs and is considered by Doctors not to be autoimmune, just a heightened response to pain. But a percentage of otherwise healthy people apparently have plus ANA too - but usually lower than 1:640.

I don’t know about individual ENA numbers -but normally this would consist of about six different antibodies pointing more specifically to the different rheumatic diseases. Mine just said equivocal against one ENA marker - no numbers given.

[patmackfin in reply to Hidden]

I was trying to copy and paste my results but I don’t think it can be done onnthis forum. ( is there a way?)

[Hidden in reply to patmackfin]

You can take a photo and upload it onto your post. But to be honest we can’t advise on the basis of blood results here as we are not medically trained.

Although I posted mine recently just to show people a clinical letter and ask about the significance of a more specific antibody which is equivocal rather than negative.

If you do feel better on Hydroxy after 3-6 months then the rheum may diagnose you with UCTD/Lupus but if you don’t or can’t tolerate it then you might be better off with a new rheum than accepting a Fibro diagnosis.

[patmackfin in reply to Hidden]

I made a new post Twitchytoes, I know we're not allowed to comment on medical results etc but, I'm just interested in your opinion. I am almost sure( you know how it is) that the Rheumatologist said if the hydroxy works it's "probably" or we will look into Lupus or something,kinda under his breath.I wish I had recorded the appointment now, at that stage I didn't know that Fibro is not usually consistent with a positive ANA. Thanks guys,for being so patient too.

[KayHimm in reply to patmackfin]

I don’t know your other symptoms but your doctor clearly has a high suspicion of an autoimmune disease like lupus. He may be uncertain right now because you are in the early phase. All the tests in the world won’t help. My guess is he wants to cover you with the plaquenil for now until he knows more. They don’t give

Plaquenil out lightly. All drugs have side effects. My rheumatologist has kept me off it because I have done well with an UCTD diagnosis, I think you are in good hands. You have a doctor working with you when things are unclear. The important thing is to keep him informed of how you are doing and any new symptoms. Wish you best of luck.

[patmackfin in reply to KayHimm]

Thank you so much KayHimm, that’s reassuring x

[Hidden in reply to patmackfin]

I can’t really tell by reading your lab results as they are so different to mine - the abbreviations/ acronyms and the lab testing criteria. It doesn’t set out normal ranges such as rheumatoid factor either or your immunoglobulin assay or full blood count, ESR/PV or CRP etc. Each lab has its own abbreviations and ranges.

You could look at mine from my post “oops” and see how differently they are set out to yours. My old hospital labs had different ranges too and different testing methods for different antibodies - so I have no way of comparing mind - old labs just had stuff like “RF positive 24” and “ANA equivocal, ENA panel negative/ normal” with no breakdown until now.

[patmackfin in reply to Hidden]

Yeah which makes things even more confusing. We will see in time I suppose. He’s treating me like it’s Lupus though right?

[Hidden in reply to patmackfin]

I don’t know to be honest but by getting you on Hydroxy he’s treating it like it’s some kind of connective tissue disease - this med is used for all of them including RA, Sjögren’s, UCTD and MCTD.

But it wouldn’t be used if he really thought you only had fibromyalgia.

[patmackfin]

Thank you Louise -a

[Lolarufus123]

Good luck w

[Lolarufus123 in reply to Lolarufus123]

Good luck with you're trial of pills I hope they help. The cortisone shot should help too. Hope you don't have lupus

Wishing you all the best

Tr

[Bakbre]

Hi there

I wasn't told what I had for the first 18 months I was being treated, I was asked if I had heard of Lupus, because I might have that, but then again it may be just "My Age!" Like I said that went on for 18 months (and to think that I allowed him to get away with that - it wouldn't happen now!). Then my consultant finally retired (thank God!) and I got a new one who was altogether different than the first one and she told me my diagnosis. I have had CTD since 2004 and it sounds to me as though you could also have CTD or MCTD. I was treated with Hydroxychloroquine for 11 years and I was given a steroid injection every year and it worked well for all that time. I was then diagnosed with RA as well. I am now on just 1 tablet of Hydroxy a day, plus Lefludomide and an infusion of Rituximab every 6 months for the RA. At the moment (touch wood!) I feel well, better than I have for the last 2 years.

I doesn't sound to me as though it is Fibromyalgia but then again eveyone is different.

Don't be fobbed off and insist that your consultant explains things before you come out. I am afraid I have learnt that the hard way. I think that at one time or another we have all gone through the same thing. You just have to stand your ground and very politely but firmly ask for an explanation.

Good luck

[patmackfin]

Thanks so much bakbre, that’s encouraging. I already feel better having a pro active Rheumy, I’ve be fobbed off for 3-4 years by 4 different doctors who obviously can’t read blood tests results or listen long enough to a patient.My anxiety was always through the roof when I saw doctors and I would always blank. As soon as he shook my hand yesterday I handed him a list 1. My past 2. Ongoing 3.occasionally 4. New 5. Once, he only glanced at it but it’s further than I’ve ever gotten before. Thanks so much x