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Discussion Starter #1
Hi all -

I'm hoping that someone has some advice for me.

For the past 6 weeks or so I've been feeling unwell. Chest pains, headaches, lack of energy. I have been going to my GP regularly and he has been monitoring bloods. I was on antibiotics for a week and then he also put me on 30 mg of pred for a week and then reduced down to 20 mg. Anyway, none of this has had much effect on me and I just had a rotten weekend, severely fatigued, headaches, sore chest and running a temperature.

I went back to my GP today and he took more bloods. He says that my white blood count is low and ESR is normal so he is inclined to think that it is some type of a viral infection. The only reason that I think my SLE may be involved is that I do have a malar rash across the cheeks of my face. It isn't as severe as I've had it before, but the only times that I have had it across both cheeks, I've had fairly major flares and ended up in hospital. I don't feel as bad as that now, but definitely something is not right.

So, my question - have any of you experienced a SLE flare but had your ESR remain normal? I am going to my rhuemy on Thursday but I figured that I would pick your brains as well!

Thanks

Nellie
 

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Hello Nellie,

My ESR is always and has always been strictly normal, no matter how ill I have been or how badly I have been flaring.

I believe, but I may be wrong here, that that can be quite typical for lupus. Hoepfully someone more knowledgeable will be along to set us right on that one soon.

Did the GP say anything about your white blood count being low?

Katharine
 

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Re: WBC

Hi Katharine

Thanks for that. He didn't really say anything about the white blood count, just that it being low was consistent with a virus - I know that it is consistent with lupus too though. They came up a bit when I was on the 30 mg of pred and he took bloods again today to see if they have dropped since I tapered down to 20 mg

I think he is a bit stumped really - I've been into him 6 times over the past seven weeks and have had to take quite a bit of time off work. He sent me for a chest x-ray too, but nothing showed. His precise words last week were 'you've something going on alright'. Today he said 'you look worse than you did last week'. I think he is really just monitoring what he can and leaving the decisions to the rhuemy which is fair enough. I had to cancel a dermatologist appt today as I really wasn't fit to drive to Galway.

Anyway - here's hoping I'll have some answers on Thursday!

Thanks

Nellie
 

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Hi Nellie,

It is frustrating when our bloods don't match our symptoms. I am very much the same as Katharine in that my bloods never show my clinical presentment. In fact my results can be perfect yet I am suffering terrible pain.

I'm lucky that my doctor looks at the whole picture before treating me. Some doctors do need some gentle education on us lupies :lol:. In my experience some go by the 'book' when in fact no 2 people will have the same symptoms or test results.

HTH,

Pam x
 

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i havn in hospital ill, and noraml esr, i have had high esr when im not bad or hurting, .bloods are only part of the picture, my gp always say we know we cant go by your bloods.

the only thing thats gone up with me is white blood cell ....but dont let bloods put you off, you know how you feel there just markers to help them.

take care Lin xx
 

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Hi Elaine

Many people here on the site will report that their ESR was normal or even extra low when their Lupus was active so its not a reliable indicator for lots of people. More importantly I would say is the evidence of your malar rash re-appearing and your clinical presentations, i.e. you are experiencing chest pains, lack of energy, headaches, etc.

Have you had a full range of bloods taken for your appointment on Thursday? I always have to go two weeks before my appointment to get my bloods done so that they will be there for the consultation. You probably know already but its also important to get your complement levels tested as they will generally be low if they are being used up fighting an immune complex. Apart from the FBC, my normal bloods would include CRP, C3, C4 and dsDNA levels.

Its difficult for GP's to monitor this stuff because, first of all, they generally dont have the experience and secondly there are a range of specialist tests that most hospitals wont carry out unless ordered by a consultant anyway. It might be handy when you are talking to your Rheumy on Thursday to see what would be useful/possible for your GP to monitor in between appointments if you are feeling particularly poorly.

Sorry to hear you missed your Dermy appointment today. That could have provided some useful insights. I hope you are okay to travel on Thursday :worried:

Take care
Joan:rose:
 

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Discussion Starter #7
Full bloods are done

Hi all -

Thanks for the replies. Much appreciated!

I got my full bloods taken two weeks ago and lots of other little bloods in--between. I've also got the results of the chest x-ray and urine results so I'll have lots to talk about with rhuemy! Joan - My appointment is in Castlebar so I don't have too far to travel.

There is definitely something going on and my GP does appreciate that. He's just not sure what! I guess I'll have more insights on Thursday.

Cheers,

Nellie
 

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Hi Nellie

Just wanted to wish you well for your appt on Thurs.

Deb
 

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Hello Elaine,
What you have been told is definitely correct. ESR is not a reliable indicator of how you feel. Good Luck with appointment.
x Lola
 

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Discussion Starter #10
Blood test results

Hi all -

I went to my GP today and he had now come to the conclusion that it is a flare rather than viral. My white blood count has come up slightly, but is still low and my neutrophils are pretty low. My CRP is pretty high also too.

So I'm just waiting for the rheumy's decision now - my GP reckons that my pred dose will be upped dramatically.

Thanks for all your replies - I really appreciate it. On a minor note - my name isn't Elaine! Not really sure where that came from!

I'll keep you updated -

Cheers, Nellie
 

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Hi Nellie

Best of luck tomorrow. I reckon your GP is on the right track. I just hope this flare doesnt last too long and isnt as severe as the other ones :hugbetter:

Cheers
Joan:rose:
 

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Update from Rhuematologist

Hi Folks -

Just thought that I would keep you posted about my trip to the rheumatologist this morning. Basically, she agrees with the GP - there does seem to be some lupus activity and this was most likely sparked off by some viral infection.

She has booked me into hospital for a couple of days to do a heap of tests - checking my chest, maybe MRI if the headaches continue, bone density etc. I can't go for a couple of weeks, so it will be nearer the end of March before I know more. In the meanwhile she has increased my pred and told me if I feel worse that she will admit me through A&E - I'm to ring her if I feel worse.

So that's me! I'm staying off work until I feel significantly better and my doctors are in agreement with me about this. Just have to break it to my management now ....

Thanks again -

Nellie
 

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Hi Nellie

Sounds as though you have a great rheumy. I hope the extra pred and the rest does you good and that you start to improve soon. Let us know how you get on.

Deb
 

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Nellie,
I flare all the time and my labs play hide and seek with everyone. It is like my blood is not my blood cause it is not reacting like I am feeling. It is harder for those of us that have blood with it's own brain. Doctors would be more incline to believe us if the blood helped us out. Ok, now that I have that out of my system. I am sure that whatever is going on with you that if you don't feel better pretty soon that you should be asking your doctor if it is common for a virus to last this long and see what the reply is. Let us know what is happening with you please. I hope you feel better soon.
 

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Hi Nellie

Im glad your Rheumy is being proactive about all this and I hope the pred and the break from work helps you.

How are you feeling today? What dose of pred did she put you on? The higher doses can be difficult to manage :hugbetter:

Stay in touch and let us know how you are
Luv n stuff
Joan:rose:
 

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Discussion Starter #16
Today's update

Hi folks -

Thanks for the replies! You have all been very kind.

The rhuemy only put me back up to 30 mg, so not too bad. 30 for 5 days, then 25 for 5 days and so on.

I had told the rhuemy about my chest being sore and she poked at it a bit. I think she made it angry! For the rest of yesterday, my chest was really sore, I was coughing lots and I was in a lot of pain. So, I took a painkiller before going to sleep - however, you are not supposed to take these on an empty stomach. They don't say these things in jest! I had to get up to throw up twice last night and spent most of the night shivering and whimpering.

Spent most of today in bed, so I don't feel too bad now. I had to cancel an appointment at my GP though, because I was way too nauseous. I rang him instead though. Bit of a fever now, but I'm taking paracetamol to keep my temperature down.

So that is me! Lots of rest lies ahead I think ...

Thanks again,

Nellie
 

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Hi Nellie

Dont just assume that was the painkiller causing you to be sick. There is a vicious virus (Norovirus - winter vomiting bug) doing the rounds at the moment. Its also very possible to pick it up in a closed environment (like the hospital yesterday).

I have been struck down with it TWICE in 10 days recently. :sick::tears: It was very, very unpleasant.

Of course it might not be that but just thought it was wise to warn you ;). The symptoms start with very strong stomach cramps, followed by vomiting and then diiarrohea. It also comes along with muscle pains particularly in the back and legs, slight fever and feeling very dizzy and disoriented. Hope its not that but if it is you wont be feeling too good tomorrow either :hugbetter:

Take care and snuggle up for the night. Hope the pred helps those chest pains soon.

Luv n stuff
Joan:rose:
 

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hi Nellie,

i had the same problem, tired all the time, chest pain palpatations, etc etc, normal ESR, thedocs decided to reduce the steroids as they thought i was on a too higher dose, anyway after weeks of feeling crappy they did a bone marrow biopsy, and i have Haemolytic anaemia, apparently its quite common with lupus patients.....
 

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Hi Kerrie,

I have moved your post about Chemotherapy to medications. The redirect option didn't pop up so I thought I would post to let you know.

Take care,
Lazylegs
 

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Discussion Starter #20
Re: Haemolytic anaemia

Hi Kerrie -

That's interesting - I have had haemolytic anaemia before a couple of times, I don't know if I feel the same now as I did then. I was more sick - all over - those times, if that makes any sense!:)

Because I've had haemolytic anaemia in the past, the doctors have been monitoring my haemoglobin and it seems to be normal. Having said that though, I feel horrible today, still haven't gotten my appetite back, chest is really bad again and I just feel a burning tiredness under my eyes as well as massive black circles.

I'm going to ring the rhuemy in the morning - I've essentially been on 30 mg of pred for the past three weeks and there has not really been an improvement.

Thanks for the replies -

Nellie
 
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