New with Lupus - well we think - any ideas or thoughts ?

Hi all, I have been reading and scouring all the questions to find all the info I can on Lupus.

I have not been right for almost a year now, mainly with tiredness (so sick of saying, I am just tired !) and the most horrific mouth ulcers, i normally have between 10-30 at any given time, and am taking Prednisolone in a staggered dose (40mg on day 1 trailing to 5mg on day 8) having a break waiting for the ulcers to get bad then starting again.

These all started in Oct 2011, I saw a MFU consutant in JAN 2012 because my doc thought I had mouth cancer, he then after 6 months sent me to a oral specialist in London, who diagnosed Alpthous Stomatis (bad ulcers) and put me on azathioprin, as my ANA came back positive in his words for an auto immune disorder.

So I start the Azathioprin in August and basically came out in hives, went back to see a different GP, who took one look at me and said OMG who look awful, gee thanks !!

So we start investigating my last 9 months of bloods.

I had already had tests to rule out Betchets, Chrons, Celiac, B12 deficiency.

The he said oh, your ANA came back positive, 1:320 with a Nuclear pattern, he explained it could be scleroderma and polymyositis or SLE. (he also explained that the prednisolone can make the reading lower, so in fact it may well have been higher)

We have tested for Polymyositis and scleroderma and both are negative, I have now had a Anti dsDNa and am waiting on the results (been waiting 2 weeks! Docs are chasing it today for me),

Basically when we sat and looked I haven't been well for about 4 years since the birth of my 2nd child.

My symptoms

Raynaulds Disease (started in 2008) my finger tipps often just go blue, even in summer

Extreme pain in my toe joints, akin to Gout

Blood Clot during Pregnancy (2008)

Extreme sciatica (i ended up in a wheel chair) during pregnancy 2008

Hip pain during pregnancy 2010

Extreme SPD during pregnancy 2008 and 2010

Back ache, especially in winter (since 2001)

Achy legs (always)

Night Sweats (2012)

Depression (started 2001 but has been more extreme since 08)

Heart Murmer

Palpitations (although these have calmed down somewhat recently)

Mouth Ulcers ( I have always had them since I was 8, but they have been getting worse and worse in the last 5 years)

Nose Ulcers (last 3 months or so)

Extreme Tiredness (not so that I can't get out of bed but I could easily go back to bed right now and sleep till tomorrow)

Vasivagel (2008)

The awful hot red rash that comes up on my face and chest, it is like a hot flush, last for an hour and then will go away, it totally wipes me out and I need a 5 min snooze after.

Weight fluctuations, but not sure if it is connected as I have had a mirena fitted and have the Prednisolone "moon face"

On and off iron deficiency aneamia

Permenant Swollen gland since EBV as a teeenager.

Extreme reaction to any virus, my husband gets a cold its gone in a couple of days, I get a cold i have it 2 weeks and then get a chest infection, the slightest sick bug, I will get gastro flu and end up in bed out of it for days. I am also entering Tonsillitis season !

The new doc I saw was great, he said straight off the bat, I am wondering if you have Lupus, something I wondered myself, he arranged the Anti dsDNA and is going to refer me to our leading Rhumie in the area (well I hope if not I will go privately).

I don't seem to have a "flare up" unless the last 9 months has been a continuous flare, I am fed up of being out and having to come home because I am tired, or going to bed with the kids, or saying to the kids, sorry mum's tired, they go off on their bikes with my husband, that would just kill me, so does a day out, I am flagging and need to have a sit down and a rest.

I am sorry to have got this all off my chest, I tried to talk to my mum, who firmly believes illness is in the head, and my husband doesn't want to discuss it till we know what it is and a firm diagnosis, so at the moment I just feel like going ARGHHHHHHHHHHHHHHHHHHHH

I should hopefully hear from docs today, at least to make sure the blood test is being done and they haven't dine anything daft like lose the results (they have done that before)

Is there anything I should ask the doc, 10 mins never seems long enough to discuss anything with him .. or should I just turn round and demand a rhumie referall ?

Incidentally I am back on the Prednisolone as I am having a bad ulcer flare up.

sorry for my rambles !

many thanks

J

3 Replies

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  • Hello Jemmy - gosh - I don't know where to start with all of this. You have been having a tough time for ages!

    Most important, I think, is that you need to try to get yourself some support. Your husband is obviously finding it all difficult to come to terms with and I can understand that he must be very worried about the future even if he is not saying (especially with the children). Your Mother's reaction is pretty bad - (I typed unforgivable, but then deleted it). I know all about this "all in the head" reaction, as my mother has been the same until recently. I'm not sure how you convince her to understand that your illness, whatever it is, is real. Maybe you could try talking to her and reminding her of the active person you used to be?

    The mouth ulcers sound truly awful, and I can only imagine how you cope with repeated high to low doses of prednisolone (a drug that can cause mood changes, and lethargy as well as weight gain).

    Good luck with getting a diagnosis - and make sure you come back here and tell us (I am not going to say what I think of your symptoms, because I am not a medic, but I'd say you need to see a rheumatologist).

    Take care Jemmy, and good luck again!

  • Hi this is my first ever time writing on this site like yourself I usually just read other people's questions and answers. I have just resently been diagnosed with lupus after having my first baby it showed in my bloods while I was pregnant. I have been put on hydrocloriquin twice a day I also have a rare muscle condition, and my mothers view is the same as yours saying its all in my head and sometimes I question it myself. I have always felt ill/unwell but always put it down to my muscle problem but since having my baby I feel even worse I am so tired all the time I annoye myself I think just pull yourself together that I can't possible be this tired. My husband isn't that supportive I know he cares and he works long hours and he gets tired I just feel he doesn't understand that I want to talk about it at times and get some understanding back.

    I have just resently gone back to work after having my baby but we decided it would be better if I started as a mobile hairdresser instead of going back working longer hours in the salon which has been better but I still feel so tired all the time am I just being lazy??

    I am sorry I haven't answered any of your questions I just felt my situation with family airport was similar.

    I hope you get your answers soon and sorry for waffling : )

  • Hi Metlack

    thanks for answering, it is nice to know others are in the same position.

    I am lucky that my husband is supportive and he has a rare genetic condition so gets the whole tired thing, I just feel like I am constantly moaning at him about how tired I am and it must seriously get him down too.

    I think the whole mother thing could be a generation thing, they whole get on with it type attitude, I love my mum dearly and I know that if I have completely diagnosed then she will be great, but trying to get her to understand that a 8 hour shopping trip to london will kill me is just not possible !

    I am lucky that I work from home running my own business, so if I want to sit with my feet up drinking tea I can, (well apart from my 21 month old) and that is the whole point of being self employed, so I think that you working part time as a mobile hairdresser is a great idea. Also, it means your not paying salon fees, so more money in your pocket.

    I too feel tired all the time, and when I collapse into the sofa of an evening and my husband is feverishly working away on his laptop i feel guilty.

    I haven't got my Anti-dsDNA results back yet, so i am not a confirmed lupus suffered, the doc was suppose to chase today but the surgery are refusing to chase as they say i have to leave it another week, but i just called the blood lab and they said my results are back, but not processed to be sent over, but my gp can all and they will give him the results over the phone ! but the receptionist is refusing to do that, so i am now sat here thoroughly cheesed off.

    J xxxx

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