A year in and still confused

[Justshiv]

Back in December 19 a small rash appeared on my lower back over Jan and Feb it spread all over my body except my face. Had several blood tests which showed up low platelets and antibodies present in my blood. Rheumatologist indicated Lupus but wanted more tests, dermatologist corroborated but also said can be triggered by some medication at which point I confirmed I had been on lanzoprozol for heartburn for the previous 6 months and she confirmed this medication is one which can trigger skin lupus. Stopped taking it and the rash disappeared. unfortunately my bloods remained with consistently low platelets. Then Covid so appt with rheumatologist pushed back. Admitted to hospital in Jan 21 after being ill (not Covid) platelets reduced to 18 (should be over 150). Started on a course of decreasing steroids from 29 Jan still on them and now the rheumatologist is suggesting a plan going forward with two new drugs Azathioprine and Hdryoxychloroquine whilst continuing with the steroids albeit a lower dose. Looking at the side effects I am quite terrified

[Boudica1]

Hi, snap with the rashes especially on the back, I'm just had a second biopsy on my back and a bit sore at the moment. The first one was over 3 years ago and was a punch biopsy which gave one diagnosis that was changed to another. This time they took a slice which is supposed to be much more accurate 🤞.They have given me a diagnosis of seronegative Sjogren's Syndrome because my blood tests are inconclusive and up and down. They also run blood tests every year for the ANA and complements C3&C4.

I can't and won't give you any advice about the meds simply because we are all different and at first it's try it some people have never had any problems but it doesn't suit everyone.

I've had Hydroxychloroquine and was perfect on it not had the other one yet. In fact I'm waiting for the biopsy results so I can restart the Hydroxy as I had to stop taking it for some months before the biopsy so as not to squiff the results and everything has come back with a vengeance.

Talk with your doctors about any concerns you may have and avoid Dr Google. This is a great place to discuss things and the NHS sites are also a good source of information.

Good luck with your treatment.

♥️

[Justshiv in reply to Boudica1]

Thank you for your response. My head is all over the place atm as a conclusive diagnosis has not been given and I am probably trying to convince myself I am fine now. There are so many dimensions to this condition it’s hard to see where you fit in. It is good to have the chance to discuss and share with people who are in a similar position thank you again x