Do doctors understand Lupus?: This is a bit long... - LUPUS UK


29,876 members26,444 posts

Do doctors understand Lupus?

Gail41 profile image
10 Replies

This is a bit long winded, but here goes. About 6 months back I had random bloods (find&treat). This found a low B12. I had to repeat in 3months they was worse. Feeling ridiculously tired by now was assured b12 injections would sort me out. Continued to struggle on aches and pains were comin now feel awful, injections having no effect. Tell nurse at each visit how I'm feeling. Says she's sure things will calm down soon. See her twice for test results and 6 times for injections. By my 1st injection 2months back I had the rash, still tired still acing like mad, I think it's all down to low B12 coz that's what I'm told. Within just a couple of weeks can't cope off work sick as I feel that bad decide to see Dr explain everything he has no idea but refers me to Dermatology for rash. They do biopsies and diagnose Lupus. Whilst waiting for Dermatology saw Dr 5 times everytime moaning about all my symptoms. Went yesterday rash barely visable now thanks to Dermatology apart from on my back. Dr thrilled I can go back to work now look so much better. Mention tiredness n aches he replies you've never been in for this only the rash. To say I felt like slapping him is an understatement. Still didnt get anything for pain aswell or tiredness either was told to wait for biopsy results then they'll know the best thing to give me. So il go back to work on Monday like a zombie and feeling like I've done 10 rounds with Mike Tyson. It's a joke can't even pick my small son up I'm in that much pain. Take paracetamol like they're toffees which dr is aware of and didnt even address so I guess this is fine even though I know it's not. Just beginning to winded do Drs even know what Lupus is

10 Replies

I dont think the question is as much, do they understand it, but more Are allopathic doctors the best to treat it.

I really dont believe that a cure, if one is possible will come from conventional medicine approaches when they are only interested in symptom control

misty14 profile image

Hi Gail

Sorry to read your having a tough time. Have you got a Rheumatology Consultant?. With this illness we need different Consultants and you need one if the B12 injections don't improve your fatigue and aches. GP's are limited with their knowledge hence there name.the 2 Consultants , Rheumy and Dermycould work together for you. This has to happen a lot with Lupus!. Hope I've helped and you feel better soon?X

Purpletop profile image

So if you've been diagnosed with lupus what treatment have you been given?? Paracetamol is more or less useless, you need something to address the disease - hydroxychloroquine (Plaquenil) and steroids to start with, I'd say. No wonder you're in pain!

Keep a diary of all your symptoms day by day. take photos of any skin rashes. Present these to your GP next time you go. You need to have all your problems on paper because when you are exhausted and in pain you cannot think straight , I know from experience. Good luck.

Gail41 profile image

Thanks for your comments. I don't have a Reumatology consultant I've only seen Dermatology. I Was diagnosed with Lupus only 10days ago. The consultant at Dermatology was in no doubt whatsoever because of my symptoms and off course the rash. She has taken biopsies to confirm which type of Lupus I have as she says there are many strains of Lupus also she said its not unusual to have atleast one other condition along with the Lupus. She said the biopsies will confirm exactly what were dealing with. I don't go back to her until November tho as by the time the biopsies are returned she will b on annual leave, so i fear I have to struggle with my other symptoms until then. She has given me steroid cream for my face,ears, back and chest and steroid gel for my scalp along with some factor 50 cream which I'm to wear everyday even when it's not sunny apparently.

misty14 profile image
misty14 in reply to Gail41

Hi Gail

Once you've had all your skin results your Dermatologist may refer you to a Rheumatologist and it would be quicker as it's Consultant to Consultant Referral. Your dermatologist is very on the ball about Lupus which is really good for you. If you struggle to wait for Nov which isn't long now, you could always try for a cancellation at the clinic. Let us know how you get on and good luck. X

kimc profile image

Hi Gail, sorry to hear about your situation. I diagnosed skin lupus more than a year now, I felt the same way as you're today, I don't know why and when I really got it. I had terrible skin rash and burning body after working on my yard, i was in cold shower for an hour but it won't help. Doctor from walk in clinic gave me prednison, it didn't help. I'd seen dermatologist and request biopsies on my arm, scalp and blood.

Now I'm seeing rheumatologist every 3 months, still not quite know everything. But reducing stress, do one task of the time, rest when feel tired, eat right and drink more water would help.

Lupus affects every body different ways, it's a inflammation due to the cells confusion and attack its own.

B12 works together with Folic acid to replaced bad cells, mentioned to your doctor on the next visit including

all your symptoms need to write down.

Is your doctor mentioned about stay out of the sun from 10 to 4 due to high UV and wear protection likes sun block, cover your body with long sleeves, long pants and hat?

If you have a bad flare, let your doctor know asap, don't wait to the next visit. Most lupus patients will refer to Rheumatologist eventually.

I hope you find some help soon.

Dimpled1 profile image

I am72 and had Lupus since childhood, but not diagnosed until 1973. Then un- diagnosed, and so on. I had a good GP though and 24 yrs ago after a heart attack saw a newly qual. Rheumy who said definitely, no question always had Lupus. I am writing this note because it saddens me that patients are STILL getting the run around and treated badly before and after diagnosis. Lupus can be serum negative ..that is the test to say positive doesn't work, but platelet count, protein in blood, low white cell count etc is a give away. Keep chins up ladies, write all your symptoms down and try auto establish a good rapport with your GP. Lupus is the pits, but we can live with it! That wolf bites us but we keep going. If at first you don't succeed with a doctor, wait a while then try another.

I hope you are soon able to find a good medic who will listen. Good luck.

Gail41 profile image

Thank you dimpled1 x

dgleds profile image

I think they do a lot of guessing...I think they are still trying to understand lupus...Ive heard Gp contradict themselves...I read so much contradicting articles on lupus...

You may also like...