Please, No Encore.

Don't know if I posted here the fact that I developed Optic Nerve Shingles following my 1st dose of MTX. Well, we assume that's what set it off, but still....

Any way, following a good dose of Zovirax Oral and eye ointment it rescinded after about a week or so and left me with the usual crusted skin craters and sores which are in the process of healing correctly now.

BUT.... (You knew that was coming right?)

Gone back on to the MTX as of Thursday evening, and all of today (Friday) am going through similar early symptoms of the Shingles attack!

Was at Bloods this morning and mentioned it to her, but she is quite open and honest and says she wouldn't like to 2nd guess the Rheumatology Clinic, so to speak to them. Of course, we are now in Weekend mode, so there's an opportunity missed. I do have ophthalmic appointment on Monday afternoon but of course, if its likely to regenerate itself, that's going to be a pointless trip as they can't really measure anything.

Really could do without this coming back at all, let alone within the space of 72 hours of a previous attack going off.

Doing all I can to remain on the positive side but my entire income stream is based on working on screens so this is even more stressful.

I've done the usual "Dr Google" searches but to no avail and would rather ask here of anyone else has ha similar experiences?

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I'm afraid I can't help you with these particular symptoms or advise whether or not MTX is the culprit.

However I can tell you is that I had pancreatitis that was misdiagnosed as UTI Sepsis and later on as Cholecystitis about 7 weeks ago. I had been taking Azathioprine for two weeks when these upper abdominal symptoms got really bad. I knew deep down that it was Azathioprine and kept mentioning this but the surgeon didn't grasp what I was saying until I was already on IV Gentamicin for infection as an inpatient. Another surgeon pointed this out to him when I was curled up in my hospital bed so he took me off it. The pain went and and the IV antibiotic got the credit for my improvement.

The rheumy and GP then both decided that once I was fit and infection free again I should retry it. With serious misgivings I did and within an hour and a half was so sick that the GP had to come up to our house and give me a diamorphine jab in my bum. He still insisted that it wasn't the drug but was my gallbladder and I tried it a third time at his insistance - but the stomach ache came back so I had to go back into hospital - where it was decided by a new consultant that this could only be an allergic response to Azathioprine - i.e pancreatitis. I had been quite sure it was the drug in the very first place!

So my advice to you is to trust your instincts. If you feel it is the MTX giving you optic shingles then it probably is but you should phone NHS 24 if things deteriorate over the weekend. I sincerely hope there is no encore for you - it sounds horribly painful.

Twitchy

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Hi SalixG, I have inflammatory disease of my retinas and have spent long hours and days at Moorefields Eye Hospital In London to try to keep some of my sight. My joints are bad too. I was once an in-patient in there, with a young lass from Jersey, who had shingles in her eye, and it was a hell of a mess. She was in there weeks on a drip. If you've got an Eye Appointment Monday, and you think it is the medication suppressing your immune system and causing the shingles to return, leave the medicine off until Monday, then ask them at the Eye Clinic what you should do, as bad joints don't worsen that quickly and sight is much more important than joints - I know I lost half of mine! Kind regards,