Unsure what to do.

[seanto]

So on thursday just gone, I had a review appoint with the head rheumatologist at my local hospital. The rheumatologist talked to me about how he wanted to diagnose me with lupus as I have symptoms but couldn't do so as all bar one blood test came back as negative. The only abnormal thing they found was that I have a slightly low white blood count. However the one day I had the test done happened to be the one day I felt pretty healthy for like the first time in weeks. The rheumatologist said that he would see me again in six months but if I had any flare ups I could go back sooner.

Then yesterday I woke up with a headache and fatigue/joint pain all over. I also then developed an itchy nose/ cheeks. I took a naproxen (500 mg) yesterday which seems to have cured my headache/ the joint pain I had in my arms but did nothing for the rest of my body. I hopped by having a nice long sleep that night, I would wake up feeling better. Instead I woke up with a sore throat, a painful cough, a blocked nose and feeling nausea. Then the symptoms I went to bed with have not gotten any better but they haven't gotten any worse ether. I am also currently being treated for a vitamin d deficiency, hypothyroidism and anaemia.

Now I'm not sure what to do as I don't know wether or not I should go back to rheumatologist or see a gp instead. The thing is I don't know if the symptoms I have would be counted as a flare up because when I ever I have had it in the past, I have always been told you probably just caught a virus, they're going round. So I just really unsure what to do and would like some advice.

[fabwheelie]

The cough, sore throat, and blocked nose sound like a virus to me. As your white count is low you are likely to pick up infections.

Your fatigue could be due to your anaemia, the vit D deficiency and/or your hypothyroid and I would expect most Drs would like to get your Hb, vit D and thyroid function tests back to normal before deciding if you have fatigue related to lupus.

Persoanlly I would see GP/ treat myself for a cold, try to get my Hb, Vit D levels and throid function back to normal then assess what symptoms I have.

I would also note my symptoms for next 6 months so I have evidence to show rheumatologist next time I saw them .

The charity lupus UK do a good progress diary which can help you monitor things lupusuk.org.uk/lupus-progre....

Also here is a link to symptoms that Drs look for when making lupus diagnosis lupusuk.org.uk/diagnosis/ to help you know what to make a note of eg skin rashes, joint pain -- where when how often etc, fatigue including how mush sleep you need, how many days at a time you may get so exhausted you can't do anything etc etc

[LUPUSadmin]

Hi Seanto,

Fabwheelie's given you a great response above. It's definitely worth documenting your symptoms for the next few months while you wait for your appointment.

We've got a couple of resources for you to use too. As mentioned, there's the progress diary which is really handy. We also have a lot of information. If you'd like a free information pack about lupus then you can send off for or download one from: lupusuk.org.uk/contact-us.

We also have a seclection of publications available here: lupusuk.org.uk/publications. These cover a wide variety of topics that concern lupus.

Keep us up to date and don't forget to go back to your Rheumatologist if you do have another flare up.

George

[seanto]

Spending the day in bed yesterday with lots of fluids cured most of my cold like symptoms apart from my nose. My fatigue has greatly Improved but my joint pain hasn't. The itchy face has devloped into a small rash on the right side of my face. I rang the doctors surgery and are now just waiting for a gp to wring back.

In regards to my vit d, thyroid and iron I take daily meds to help control my levels. I then also have a review appointment with my endocrinologist in april.

[LUPUSadmin in reply to seanto]

I'm pleased that your cold symptoms have cleared up Seanto. Please keep us up to date on things with your GP.

George

[seanto in reply to LUPUSadmin]

thanks. =] I think im mostly over what I had on the weekend, now so im getting somewhere. My immune system is still trying to fight with my joints. Though I had an in house appointment with the gp today. He couldn't really advise me on my rash as he said its non specific. Though he did say if doesn't go away or my joint pain gets any worse I should pop back up to rheumatology. Though he did say they may send me back to the gp and if that was the case they said they will deal with my symptoms.