I feel so poorly at the moment! I have SLE but have been so ill And exhausted since about November and nothing's helping I had a blood test done a few weeks ago and my Lymphocyte count, neutrophil count, total white cell count, haemoglobin and haematocrit are all quite low? Would this be contributing to me feeling ill? My haemoglobin is always quite low but my consultant never seems bothered by it..
I'm constantly out of breath, hands going blue, lips blue, so exhausted, depressed and anxious about it all now..
I'm on prednisolone (5th month) and hydroxychloroquine (9 months) But I really don't think they're doing anything
Any advice welcome x
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Charlottelauren
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Sorry you're feeling so unwell at the moment. Has your doctor checked your iron levels? Or vitamin B12? I was feeling the same except I am on azathioprine as hydroxy chloroquine wasn't working for me. I'm now on B12 injections and feel much better not so tired. X
Yeah I have low iron which I take iron tablets for but they don't do ANYTHING for me! My b12 was low before Xmas but just had it checked again and it's 210 now.
Sorry to read your so unwell. Could you see your GP about increasing your steroids for a short time to get on top of symptoms better. Also ask him about treating the anaemia you have as that can make you tired , breathless and your lips shouldn't be going blue!.
Are you due to see your Rheumy?. If not might be worth seeing if you can bring your appointment forward via a cancellation.
I'm already on 20mg steroids a day and my consultant said because of my height/weight (im tiny!) I shouldn't be taking more than that. Seeing him again on Thursday but to be honest he is not helpful at all
Good luck for your Rheumy appt on Thursday. Hope he's more willing to help, if not then seriously think about a second opinion as George has suggested. 20mg daily steroids is a high dose if it was lower you'd have scope to put it up in a flare just for a few days then come down again!. Let us know how you get on. X
Sorry you are feeling so dreadful. I have had lupus for a number of years, I take 5mg of prednisolone daily alongside hydrocochloroquine. My GP has agreed I can increase my steroid's when I have a flare. This may be worth you discussing with your GP as it gives you control and quite honestly when you feel as you do sitting around in the waiting room at the doctors is the last thing you need.
As Dixie says have your iron and B12 checked mine was low before Christmas and a course of injections helped.
I'm sorry to hear that you're feeling unwell at the moment. It would be good to mention all of this to your consultant and ask your questions on Thursday. Hopefully they should be able to say why you might be feeling this way at the moment.
You've mentioned that you aren't very happy with your consultant. Could you ask for a second opinion, or to be referred to a different consultant?
I'm so sorry you aren't feeling so well. I too have been so exhausted. I have Lupus, MS, APS and Behcets. Since Friday I have been so exhausted and just feel unwell, vague symptoms except when I get up to do anything, I get winded, shaky and heart racing. One of my other support groups I belong to, well ...seems like everyone was agreeing that they thought with everything I have been going through that is was depression. It could have been, but, I went to the Drs. my reg Primary wasn't in so I got someone different. She ran every test she could think of. Some results came in fast..1 is I am highly positive for Epstein Barr Mono. That was a shocker to me. Unfortunately she said there isn't any cures just rest, drink plenty of fluids and chicken soup... Hope you feel better. If you haven't had a test for mono, maybe see if they can do it as she said it stays with you for long time.
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