Shingles?

[houndmum]

HI, I was diagnosed with PMR over a year ago and have been doing very well with very slow reductions of pred. I have felt very well in myself.

I now have a pain in my back. Waist height, right hand side. A niggle for a few days, then it became much worse. A deep dull constant ache, not sharp. It was worse on bending, twisting or reaching. I'd wondered if it was a kidney infection.

After asking if the pain was related to my PMR, which I discounted on the grounds that it is very much one-sided, a doctor at the local health centre (not the one who finally diagnosed my PMR) has diagnosed Shingles on the basis that I had a minute spot at the site of my pain. She prescribed amyltryptilene to give me a good nights sleep, told me that anti-virals had side effects so didn't prescribe them, and told me to take paracetamol or ibuprophen for the pain. She said Shingles affected the nerves that run down the spine, but my pain isn't anywhwere near my spine!

The spot was not inflamed as in phots on the net. I'm pretty well certain that it it was a midge bite. She dismissed with "Not at this time of year." We have had some very warm weather and am sure I have seen them. (We are out with the dogs daily and flying insects home in on me!)

I took 400mg ibroprophen which has reduced the pain to easily bearable. A second dose didn't make much difference. I'm not having much trouble sleeping though the pain does seem worse in the night/early morning. The anti-depressants have stayed in the packet.

The spot has not crusted over and formed a scab, it has just faded and is only visible because we know where it is but the pain has not gone with it.

Is this linked to my PMR after all? I am about to start reduction to 4mg. (Doing DSNS without problem so far) or something else? It doesn't feel like nerve pain, it feels as if something is inflamed.

Does anyone have experience of Shingles with PMR. The doctor was obviously expecting me to have a great deal of pain and I haven't. Where is shingles pain sited?

Does it disappear with the rash? What sort of pain? Any ideas?

[Celtic PMRGCAuk volunteer]

Yes, I had shingles - very unusually sited on an arm, but it proves it can turn up almost anywhere on the body. The pain was unbearable, especially when I let my arm dangle and, thinking that I might have injured myself somehow, I saw a physio. He immediately spotted a small rash and sent me off to my GP who diagnosed shingles who, in turn, prescribed the necessary antiviral medication. This medication is a must and should be taken as soon as shingles is suspected to reduce ongoing nerve pain, certainly within 36 hours. I certainly didn't experience any side effects from the treatment even though my body usually resents most medication.

If your gut instinct is that you had an insect bite and this has now gone but the pain remains, then you should have the pain further investigated. Perhaps some U&E blood tests included to rule out any kidney infection for instance.

I would definitely resist starting your next planned reduction in steroid dose until this has been sorted out or has resolved. Good luck.

[houndmum in reply to Celtic]

Thankyou Celtic I think thats what I needed to hear. The doctor who finally diagnosed my PMR only works part-time so the chances of getting him for an urgrnt appointment are low. He has said he will return a call within the day so maybe now (or Monday!) is the time to test him out. Last time I saw him he said it would not be the end of the world if I couldn't reduce any further so know he will not object to delaying the next reduction. Tried 4mg yesterday and there was some pain in calf muscle. Coincidence or what?

[polkadotcom]

Don't know much about shingles - apart from the fact that the nerves can be damaged leading to excruciating pain along the nerve - but do know a lot about general nerve pain and yours doesn't appear to be that. It could be bursitis which does happen on only one side for some, so worth checking that out. It can and often does run alongside PMR.

I think it would be wise to delay any further reductions until this is sorted out. You are on a really low dose and any Pred side effects are negligible now.

Is there another GP in the practice that you could see?

[houndmum]

Yes, the one that diagnosed my PMR! Wouldn't it be nice to have confidence in all the doctors in a practice. I've got an arthritic shoulder which results in nerve pains. That aint what I've got thankfully.

[PMRpro Ambassador in reply to houndmum]

Not sure seeing another doc would make much difference now the dear child told you antivirals have side effects and wasted the 48-hour window where they are worth starting - I'll pass on having her as my GP I think since on those grounds she can't prescribe much! Although she is perfectly happy to tell someone on pred to take ibuprofen - maybe she has never met a patient with side effects due to it...

Like the others though - no more reductions until it has sorted itself out and in fact a bit more pred might help the pain, it is sometimes used in shingles.

[houndmum]

Thank you PMRpro, I think that I visited the rest of the docs in that practice when I was in head banging mode 18 months ago and decided I'd found the only one able to listen to me and diagnose on clinical presentation rather than blood tests alone. I have felt brilliant on prednisolone and don't think my imune system is in the least compromised by them. A huge relief to get the prescription finally. I know that they cause some problems for some people but that assumption should not be the sole reason to base a diagnosis which is where I think I am now.

[gbax]

I have had PMR for 10 years with frequent flares. A few years ago I developed Shingles on the left side of my face, running from the corner of my eye to the tip of my nose. As soon as a noticed the weeping blisters I rushed to my GP. He gave me anti-vitals, which probably saved my sight. My eye closed over totally for several days. I saw a consultant eye surgeon that confirmed my eye had escaped any damage. At the time I saw him my scabs were like lumps of black coal. My GP advised to increase my steroids at the same time.

Shingles is caused by the Chicken Pox virus that lay dormant in your spinal column. My shingles appeared at a time that I was under great stress. Please rest assured that it is highly unlikely that it is connected with PMR. Please ensure you take anti-virals at the earliest moment. Oh, and get some effective pain relief.

Good luck