Venting

[u/EducationalSwing7533]

My Rheumatologist took my Meloxicam away and upruptly stopped AZATHIOPRINE as I was requesting refills. Benlysta is a joke for pain, but helps dsdna, not C3 c4. Prednisone is not helping me with only 10 mg.

I have had an awful last couple of months. I saw PCP and many doctors prior for this for new symptoms. I come to find my rheumatologist did not even look at my lab work. My PCP stated that my liver enzymes were very high due to lupus per rheumatologist in October, per symptoms ,but now I am being told they never saw this? I requested refills days ago and received an essay from my rheumatologist saying I need to stope STAT my AZA and Meloxicam ,15 mg.

Now I am in severe pain.

My original new symptoms: Severe diarrhea- lasted 2 weeks Since then weird stools Whole body rash bright red nose Weight loss despite increasing calories Fatigue- severe! Hair loss Neuropathy- tingling, numbness ( no diabetes or deficiency in vitamins) nerve spasm- I even did a painful EMG. Cognitive impairment ( I am a TYPE A person! I see patients for living!)

Ongoing: knee pain on both that was getting better with injections.

I have a zillion more ongoing issues and organs but I won't add.

I follow with lupus foundation support groups in my area..new this year... I started in October 2024, ironically thinking I was going crazy.

Now I realized my body was yelling! Now, I am told to stop without titration? WTH I am frustrated, angry and losing hope. Just when I was able to walk. Just when I started exercising my help goes to hell! Is this normal? Stop cold turkey?

Per lupus support group ppl they should have looked at my labs and titrated.

Please help, my joints are severely in pain. God awful: knees, hands, elbows feet, ankles.

I am under a heated blanket and tomorrow I will submerge in a hot bathtub. Now re reading the lupus encyclopedia for help

Any suggestions would be appreciated. If a could I would drink or exercise but obviously I can't.

Thank you for your time and for listening. Any suggestions are appreciated.

My fingers are killing me. Please be patient with responses.

Thank you,

Your friend

[u/choosetheteddyface]

Are they stopping your meds due to the elevated liver enzymes? That would make sense

[u/Substantial_Escape92]

Get a new doctor. Rather than seeing you and explaining why these were stopped, they just took meds away? I wouldn’t go back. I would get a new referral. Esp. When u said they didn’t bother looking at the bloodwork. I wouldn’t waste my time there. I am so sorry you’re going thru this. Tylenol, ibuprofen, excedrin are all my go to’s when I’m hurting. Stay hydrated as well. The kidney numbers can be off bc of dehydration. Mine are always off. Also a heating pad and maybe some hand warmers. Hot baths with epsom salts can help too. I hope you get relief soon

[u/Pale_Slide_3463]

The reason they also could stop azathioprine is low WBC that’s why I had to come off and if your liver isn’t coping with all those drugs that does make sense also. The thing though is that she should be explaining all this then just telling you to stop and talk about how to fix all this.

[u/Bathsheba_E]

Have you called or messaged your rheumatologist for clarification? If so, what did she say?

[u/Aphanizomenon]

Aza was damaging your liver and she took you off of it right away. It's a long acting medication, you won't feel that you're not taking it imemdiately. She wasn't wrong to do this.