Struggling with Severe Pain & Seeking Advice on Next Steps

[Abarna]

Hey everyone,

I've been in the hospital for over a week now with severe lower abdominal pain, joint pain, and a high heart rate (over 125 bpm). They did a CT scan and found some blockages in my colon, so I had a sigmoidoscopy yesterday. Thankfully, it didn’t show anything serious, but the pain is still unbearable.

As I mentioned before, I have lupus and was previously on methotrexate, hydroxychloroquine, and prednisolone in srilanka. However, after coming to the UK, my new doctor stopped methotrexate and hydroxychloroquine while tapering my prednisolone. Since then, my symptoms have worsened.

Right now, I’m on oramorph every 4 hours, but it only helps for about 30 minutes. Codeine doesn’t work and causes constipation, and I’m allergic to paracetamol (it gives me hives). Naproxen helps a bit (40-50%), and I take it at home with omeprazole. But if they discharge me now, I won’t be able to manage the pain without better relief.

Before all this, I was independent—walking to the shops, cooking, cleaning, studying—but now, I rely on my husband for almost everything. I really feel like I need to see a rheumatologist, not necessarily stay in the hospital, but I need proper pain management before I can go home.

My urine test showed +4 blood and +1 protein, and my blood work isn’t great—low hemoglobin, low RBC, low MCV, high MCHC, and a CRP of 14. I honestly don’t know what’s happening to me.

Has anyone experienced something similar? Would it be a good idea to contact the London Lupus Center or RUH Bath Hospital? And how do I go about getting an appointment there? Any advice would be really helpful!

[Tiggywoos]

i am so sorry you’re in this awful situation and in so much pain .. has a rheumatologist been to see you on the ward ? X

I wouldn’t rush to get home as outpatient follow up in parts of the UK is very poor and outpatient appointments are scarce .

You will need your GP to refer you to Bath or London lupus centre . You don’t sound well enough to go anywhere yet bless you 😘

[KayHimm]

Abarna -

I feel so bad for you. We can all hear the suffering from your note. I can’t imagine being functional on one drug combination and then end up in pain in the hospital.

The important thing at this moment is to get an explanation from the rheumatologist who changed your plan. Were they concerned about the damage the prednisone was causing? Did they want you on a new DMRD? Were they moving toward a biologic that is specific for lupus?

I agree with Tiggywoos that referral to a lupus can wait. Right now all of the specialists can easily communicate and come up with a plan.

Hoping for improvement and better communication on the part of your team.

Kay

[StriatedCaracara]

I self-referred to the London Lupus Centre

As well as face to face, different online technologies used, and different consultants are linked to different NHS hospitals.

healthunlocked.com/lupusuk/...

[StriatedCaracara in reply to StriatedCaracara]

Another option:

If you are in Exeter, could they transfer you over to Bath, so the Lupus Centre of Excellence team there could take over?

I'd imagine coming off your meds has not only made you flare but also has affected your gut.

[Potatoheat]

Gosh no wonder you are poorly. Stopping and reducing those meds all together was a silly move, what were they doing? Definitely try to see a Lupus expert , I'm sure they can sort you out. Best of luck.

[Greengirls]

So sorry to hear of your pain, we all feel for you. I hope your rheumatologist is involved in your hospital care, as it sounds as though you need some help, quickly! I don't understand the stopping of the hydrochloriquin and tapering of the steroids either. Hope you get the help you need, maybe a second opinion with rheumy may help. Thoughts with you.

[KayHimm]

Abarna -

Did you see a rheumatologist in the hospital? It looks like certain medications are very difficult to access in Sri Lanka. Your doctors may think you need to be on new drugs that have less damaging long term side effects.

I hope your UK team gets you back on track.

Best of luck.

Kay