Why won’t my GP prescribe lupus drug treatment?

[Buffer]

Hi, I have lots of lupus symptoms dismissed by a useless rheumatologist who didn’t understand the word I was saying, I have been having a very bad flare with lots of GI issues to,GP took bloods very anaemic positive ana 1/400 positive DS DNA over 40. She was originally thinking inflammatory bowel disease I had a CT scan of my abdomen came back inconclusive she now wants me to have a colonoscopy just to rule it out but says it’s probably lupus. She has sent an urgent referral back to my rheumatologist when I asked her if there was something she could give me she said no but she knows what I should be taking but it can’t be GP prescribed I don’t really understand what’s going on if anybody can please help me I really appreciate it thank you.

[Spanielmadlady]

Lupus meds are powerful drugs and need close monitoring for side effects with alot of blood tests.my gp only took over prescribing once my bloods were stable and I had a shared care agreement in place .lupus is very complex and above the heads of most gps. keep a symptoms diary and pics if possible .be confident in how you feel.if brain fog allows educate yourself while you wait for your appointment there is an 11 point criteria for lupus you may find helpful. Is your gp giving help with the anaemia? My gi issues have improved since going lactose free have you considered looking at your diet?.fingers crossed you get some help soon but dont expect immediate changes...lupus drugs take months to work and the average time it takes to get a lupus diagnosis 6 years .All the best 🤗 xx

[Buffer in reply to Spanielmadlady]

Thank you for replying, I understand diagnosing lupus takes a long time I’m about four years in to the journey, I have done elimination diets nothing seems to trigger me, I had a symptom diary and photos but the rheumatologist wasn’t interested. I just want to feel better. I’m used to being fit active and healthy long distance runner yoga cycling et cetera. Thank you for explaining to me why my GP couldn’t prescribe the drugs I thought it was a bit strange as she’s done nothing but throw drugs at me for the last couple of years.

[Spanielmadlady in reply to Buffer]

I used to have an active job but I cant do it now...my journey to diagnosis took 5 years.if I was you I'd ask for a second opinion if you feel you are not being taken seriously...id be questioning them and asking for explanation as to why they aren't taking me seriously. Asking why they arnt lookomg at me as a whole when I have symptoms and positive bloods

[lufibabe]

HiAre you on any NSAIDs by any chance? Like ibuprofen or naproxen? That can cause GI issues too

[Buffer in reply to lufibabe]

Yes I have been on naproxen on and off for years.I had an awful ulcer attack a couple of years ago,I have bad osteo arthritis and was put back on them with Lanzaprol .My GP has took me off them all now I just take amitriptyline.

[Cas70]

Look up on here or research on line to find a Rheumatologist who is listed as dealing with Lupus / autoimmune illness. Then go back to your GP and insist you want a referral to this Dr. Under the Patient’s Charter we are allowed to do this. We are entitled to it again after too. I did this and I get a better rapport for certain. I took a friend to her GP and she got into Guys which is a centre for Immune illnesses. You can cut your pain and depression in half by insisting on a SPECIALIST.. Go back to your GP

[KayHimm]

Buffer -

I really feel for you - four years is a long time to suffer like this. I wonder if this bad flare was when you started to produce the blood tests that point to lupus. Many of us had negative blood tests early on but then turned positive.

If your GP put in an urgent referral, she is concerned about new symptoms. The GI issues are difficult to sort out. It seems right that your GP is moving forward with those investigations. Lupus can also affect the GI tract. The rheumatologist would probably send you for these tests anyway, so the sooner the better.

That is encouraging news from @Cas70. If you can request a different rheumatologist, you should do that. You want to feel you can trust your doctor and have confidence in their decisions.

Hope you get evaluated soon. In the US it is similar. Our GPs may be able to prescribe the drugs for autoimmune disease but probably rarely do. You need to know a lot.

Best of luck and let us know how you do.

K

[Buffer in reply to KayHimm]

Thank you all for your help and understanding. I did ask for a different rheumatologist but she said it would be a separate referral and would take way too long before I got seen. She has outlined all of my symptoms in the urgent referral so hopefully he can read better than he listens! Fingers crossed it won’t be too long I am really struggling with the constant fatigue.