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I don't know, is it a flare?

547 Views 17 Replies 7 Participants Last post by  Maia, 
A
Hello everyone, hope you're all doing well.
I've been feeling rough for awhile now, Fevers upto 100.6 deg's F, Swollen glands- neck ,collar bone ,base of skull ,groin ,armpits, daily headaches,
joint aches / pains ,slight stiffness , muscle pain , tender spots ,night sweats ,leg weakness (coinciding with low INR), episodes of all-over itching ,nearly fainting twice in a month , neck pain, lower back pain , hip pain , not sleeping very well at all.
I don't know what to do .I've had my appt with local rheumy brought forward to April (it was June) & I don't go to St Thomas' until June.
I'm sick of going to see Gp , she must think I'm hypocondriac.
I don't actually have lupus wrote down as a diagnosis but thebSt Thomas' team have mentioned it several times ie: "lupus-like illness" & "lupus symptoms but not classical lupus", & I've had Sle/ APS written on medication form for my GP, as reason for prescribing.
I don't know whether to ask if Gp can run some tests just in case it is a flare, who knows it may lead to a proper diagnosis.
I'm sick of feeling rough , having to keep lying down , hobbling around like an eighty year old.
Any advice please.
love
Angied
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J
Hi (((((((Angie))))))))

So sorry you are feeling yuk at the moment.

I would pester the doc for some blood tests: at least it will be something to compare against when you see the rheumy. If it is a flare (and it sounds to me like it is) then you can "catch" it showing on the blood tests.

I'm hoping to do the same thing to my GP on Friday when I see her as this cold I have had has stirred everything up.

Let us know how you are getting on.

Love Judi xx
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L
Hello, Yes it sounds like a flare and you need to take it easy.
Thinking of you, you have a long way to go to Tommies, do you stay at the Patient Hotel? I usually do and I live closer than you.
x Lola
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A
Thankyou for your replies.
I 've made an appointment with my GP for this afternoon.
I just hope I have the courage to ask for tests , which test do you think I should ask for?
Lola , I don't stay at the hotel, because we have children with special care needs ,so it wouldn't be practical. So we take our diabetic daughter with us, sometimes we take our youngest son also , we leave the rest with my mom.She takes them to school & feeds them.It's always an early start and we arrive home late, it's always very stressful & it's boring for the kids but there's nothing else we can do.
Thanks for the advice
love
Angied
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C
Hi Angie
I am sorry you are feeling so rough Your GP could do a complete blood count, urine, SED rate, liver function and an ANA. I suppose she can also check thyroid and glucose and metabolic panel and possibly some blood clotting tests? Our GP has a anti coag clinic now so they can check on INR ( that's re APS) I don't know if GP's can order complement tests or any of the lupus antibodies.

Lots of luck to you (((( Angie )))

Clare
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A
Thanks Clare,
I've wrote them down , The Gp I've been seeing recently is quite nice ,so I'll see if she'll order the tests.
I've also got a mouth ulcer today.
I've been keeping my usual diary of symptoms , I've typed them onto the computer .
I dont know whether to send a list (with a cover note) to Dr D'Cruz.

Love
Angied
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J
Angie

Get him to check your B12 levels as well while he is at it. Heres a link showing signs and symptoms

http://www.nlm.nih.gov/medlineplus/ency/article/000574.htm

Best of luck
Joan:rose:
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A
I saw the Gp this afternoon.
she checked my ears, throat & chest for signs of infection & couldn't find anything.
She suggested it could probably be lupus & asked me for a urine specimen, I could only produce about 5 ml because i went to the toilet earlier but she checked it anyway.She said there was a small amount of protein & leukocytes ,and also some blood , she asked if I'd got any symptoms of a uti but I haven't.
I've got to do a MSU tomorrow & go for some bloods, then go for a follow up next Wedneday.
She ordered FBC , ESR ,VIT B12 ,CRP ,RF ,Urea ,Electrolytes ,Lft , Tft ,glucose & ANA. She said I had my complement done by St Thomas' in October so there was no need to repeat.
My C4 & C3 had been on a steady decline until April last year ,C3- 0.94 C4- 0.13 (still with range) then the last C3 was 0.94 & C4 was 0.15.
My INR was checked at anti coag clinic this afternoon it's gone upto 2.6
which is good.
Thanks again for the advice

Love Angied
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J
Hi Angie

Glad you had a good appointment. It looks like your GP is being proactive. Keep us posted with the results.

Thinking of you.

Judi xx
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A
Well,
I've just returned from the GP & I still don't know what's going on.
She said my ANA was neg (no surprises there), my B12 was neg,Rf neg , she didn't mention the urine or FBC or the otherr and I must admit I FORGOT TO ASK, I feel such a fool now. My head was killing me , my period has started & I'm in so much pain with that ,i generally feel quite terrible.
Now I'm going to have to ask the receptionist for copies of blood & urine tests , which will take forever & listen to complaints about patients having access to information.
I'm so near to tears this morning.
Asked about pain killers again she said to stick with the co-codamol, but they don't work. Am I supposed to suffer without any relief from pain?
i'm sorry but I'm afraid I'm feeling sorry for myself.
love
Angied
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A
Just had a phonecall from the Gp , she said she looked at the blood results again & it seems that I'm anaemic again . So she's left a prescription at the reception for me to pick up.
i asked her if she would copy the blood & urine test results for me but she said I have to write a note to the practice manager & request them.so it looks as if I'll have to wait.

Angied
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J
:there: Big hugs to you ((((((Angie)))))).

I know how frustrating it can be. Some GPs are wonderful and treat symptoms without a diagnosis (my last one was a dream...and handsome, too!), others can be a right pain in the posterior. Let's hope your rheumy appointment can shed some light on a diagnosis and get you on the treatment you need.

WRT painkillers, co-codamol doesn't do a thing for me, either. I get some relief with dihydrocodeine but not completely. If I wasn't on dosulepin for nerve pain I think I would have gone crackers by now. Is there another GP at your surgery you can see for pain relief? Some surgeries can refer you to a pain management clinic. Where I was in Worcestershire I was referred to a physiotherapist who was specialising in pain management. She treated the whole body and not just the painful ankle that I had (and still have, by the way!).

In the meantime have you a wheat pack you can heat and put on your tum? I found that a warm heat pack on my thighs helped a bit with period pains. If you can get into a warm bath, it may help.

Hope you can get some relief soon. Thinking of you.

Love Judi xx
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A
blood test results

Hope yo're all doing okay.
I've recieved a copy of bloods from Gp but there's no reference ranges:
Tsh- 2.64 , Albumin - 46 , ALT/SGPT - 26.0 , Bilirubin - 7.0 ,
Alk Phos - 47 , Urea - 7.6 , Potassium - 4.7 , Sodium - 143 ,
Blood glucose - 4.6 , eGFR - 67 , Mch - 24.7 , Esr - 5.0 ,
Monocytes - 0.43 , Neutrophils - 3.99 , Mchc - 30.6 ,Hb - 10.5 ,
Rbc - 4.25 , Eosinophils - 0.01 , Lymphocytes - 1.26 , Platelets - 309
total WBC - 5.7 , Basophils - 0.05 , MCV - 80.7 , Vit B12 - 195,
RF - 11.0 ,DNA - neg , Ana - neg , Creatinine - 81 , Crp - 5.0
Haematocrit - 34.3 , urine dipstick - (+ prot , + blood , positive leuc , negative nitrate) ,

I continue to have same problems but have got more over last few days ie: pain in upper right chest sometimes when I breathe & move( can't work out if it's my ribs or inside ), Pain in my stomach sometimes stabbing & hurts to touch , pain at back of knee when standing or walking , my eyes are very dry & it feells like there are bits all along inside of lower lids , lost my sense of taste.

Now I've got a copy of bloods I'll send it to St Thomas'

Sorry for rambling
love Angied
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H
:) Hi Angie, I'm so sorry that you are feeling so rotten right
now. If yyou feel up to it, you could ask your GP to run those blood tests that Clare just mentioned. But as for you doing anything else, you admit you don't feel good, and your health is most important, soplease, just pace yourself, and lie down and rest at any chance you get. You need it.
Let us know what you decide to do.:wink2: ​
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C
Hello Angie

I suppose the doc would have picked up any abnormalities or is that a really daft thing to suppose. I hope you'll feel a little better at least when the anemia is corrected. If you'd like me to check out all the values for you I will try but I can't comment off the top of my head.
Do you know that the INR is right for you - I know that people sometimes feel better when it is a bit higher or lower.

Hugs
Clare
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A
Hello & a big thanks for your replies,they're very much appreciated as usual.

Re ;pain , I was taking co-codamol 30mg + 500mg for awhile which were helping sometimes but theanticoagulation clinic didn't want me to take those because they interfere with the warfarin too much.
So I take co-codamol 15mg + 500mg which are useless.
I use hot water bottles , old socks filled with rice (heated up)
I used to have accupuncture which did help at first but the second course
had no effect.

I'm in a highly stressed state at the moment because my youngest has his hydrocele operation in the morning ,he has many allergies & asthma and I'm terrified.
Clare ,would you mind having a look at the values for me?
My INR range is between 2 -3 & to be quite honest I can never tell where I feel better at because I feel crummy all the time.Neurologically I suffer more when it's near the lowest range but when it dropped last month I didn't realise with all the other symptoms I've been having.

Anyway I must go now ,I've got a lot of things to sort out for tomorrow.

Love
Angied
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A
Everthing ended okay with my son.
He was very sick after the anaesthetic but we were able to bring him home at 7.30 last night.
He's in pain today but okay.
i've been in bed most of the day because I had him in bed with me last night to keep a close eye on him.
I got up feeling very achey & worn out.

Clare T; Could you please look those blood values for me, I'd be very grateful.
I don't seem to be able to sit at the computer for long these days , I get very achey & uncomfortable & I don't seem to be able to take much in mentally either.

Love
Angied
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M
I think you should ask for the reference ranges to be printed for you from you lab. They really do vary from place to place, and without giving the units of measurement for these values, it's really difficult to make comments on meaning of blood test results.

The only things that stand out for me is that it appears you're a little bit anemic (low hematocrit, low hemoglobin (I think that's what hb means in your lab at least) and an almost low MCV. These all have to do with red blood cells. These values are not really low - just a little and not too concerning.

Obviously the protein and blood in the urine combined with the slightly low eGFR of 67 (I can't make sense of a creatinine of 83 - that's certainly not the scale used around here - perhaps you meant 0.83?) does indicate potential kidney problems. But really you need to discuss these results with your doctor and get reference ranges for your lab printed right next to your results. It's nearly impossible to give advice unless Clare or someone else uses the same lab as you & has the correct reference ranges.

Glad to hear things turned out all right for your son.
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