PMR Shingles and tapering pred: Hello all. Just... - PMRGCAuk

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PMR Shingles and tapering pred

Seraphina56 profile image
15 Replies

Hello all. Just emerging from the fog of shingles and wondering when I should start tapering the pred again. I had an aborted attempt, I'm on 10mg. I reduced to 8, too much I know, on 3rd January and by 13th was in awful pain which I assumed was a PMR flare. l put the pred up to 13. But by 20th Jan I had the start of a shingles rash confirmed as shingles by the Dr. I put the pred back down to 10. Now I have no rash but still a lot of shingles pain which is only controlled on Tramadol.

So now I'm not sure whether the original pain was all shingles or some PMR flare as well.

I would like to get off the Tramadol ASAP obviously but can't at the moment, so thought l might try to reduce the pred again. Very slowly this time. Can anyone tell me, is it too soon? Is the pred helping with the shingles or making it worse? Any ideas?

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Seraphina56
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15 Replies
SheffieldJane profile image
SheffieldJane

I doubt that Pred has much impact on Shingles now. It will have had a role in your being more likely to develop this virus with your suppressed immunity. I am glad that Tramadol gives you some relief. I doubt that it will have helped much with flare symptoms. I would err on the side of caution with tapering right now. 10 mgs is a good solid dose to rest at. When the pain seems to be easing, I would try a slow taper of 0.5 ( buy a tablet cutter). This sort of slow and tiny reduction is more likely to stick and not have you yo yoing up and down. I hope you feel better soon, you have had a rotten time.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

You don't "pick up" the virus in shingles - it was there from childhood when you had chicken pox.

SheffieldJane profile image
SheffieldJane in reply to PMRpro

arthritis-health.com/blog/y...

I was basing it on this. A lot of of us ( not statistically significant) seem to develop Shingles.

PMRpro profile image
PMRproAmbassador

10% - TEN PERCENT!!!!!! At any time - 1mg at a time is more than enough after 10mg - and when you are starting again after an illness then 1/2mg at a time is more suitable and even better together with a slowed tapering approach.

Pred is used in shingles to reduce pain - but whether it does much for postherpetic neuralgia I really don't know - I imagine you have to try to find out. And the same applies to the question of is it too soon.

Seraphina56 profile image
Seraphina56 in reply to PMRpro

Thank you both for this help. I'll definitely be erring on the side of caution from now on.

Blearyeyed profile image
Blearyeyed

Shingles involves a lot of Neuro pain. Not just at the site of your rash or blisters , but along the Nerve pathway that the shingles virus travels from when it becomes active.

This is why you can have a huge increase in pain for a few weeks before the actually spots occur , and this can obviously be confusing for someone with an existing Pain Disorder like PMR , GCA , RA , OA or Fibro as you assume all of your Pain is being caused by one if them.

If you have Shingles the Nerve Pain Symptoms of it are also the last to leave . If you receive Nerve Medications for it , it will need continuing for a,while and tapering slowly . Some people can have Post Shingles nerve pain for 6 months or more after an attack , even if the rash was quite minor.

If you reduce your Pain Medication for Nerves like Tramadol and you have a big increase in Pain 3-5 days after it , it is a good indicator that you are still suffering Nerve Pain not only new inflammatory Pain from PMR. Keeping control of this Nerve Pain is important to prevent it causing more Tension and Stress in the body which would then increase the probability of an actual flare of PMR too.

I , personally , would not try to Taper my Steroids for a month after a bout of something like Shingles . Both to give my body time to recover more from the Shingles itself and get strong enough to cope with withdrawal , but , also to give myself time to begin to slowly reduce my Nerve Medication first , and ,,test if I am recovering fully from that.

If you suffer an increase in Pain , even as you begin to Taper , I would be inclined to test the possibility that it is Nerve Pain first , by use of Paracetamol or by a return , or increase, to using Tramadol , when you eventually start a steroid Taper again.

You may find for some months that the Pain you are experiencing more of is Nerve Pain and not just PMR or PMR withdrawal side effects .

If nerve pain is ruled out , you are more likely to be struggling with your Taper or suffering from PMR related Pain and may need to stop you Taper or increase your Steroids then.

If you haven't been advised to yet , increasing your fluid intake , Vitamin C , B complex , Magnesium and Zinc through food and/ or supplement can help speed up nerve / skin / post shingles recovery.

Seraphina56 profile image
Seraphina56 in reply to Blearyeyed

Thank you for this. I think I will take some supplements and probably not try to reduce the pred again for a little while. Do you have any idea at what point my pain is acute shingles and when it starts to be postherpetic neuralgia? I've had the pain for just over four weeks. The rash was quite mild and has gone. I really don't want to be on Tramadol for too long as I know its hard to get off it. I tried to reduce it a few days ago but the pain just came back.

PMRpro profile image
PMRproAmbassador in reply to Seraphina56

The pain due to shingles should resolve once the rash has gone. When it persists beyond that it is called post-herpetic neuralgia

Blearyeyed profile image
Blearyeyed in reply to Seraphina56

If the pain came back when you tried to reduce Tramadol it is likely that you are still suffering from the Nerve Pain even if you are still coming to the end of acute Shingles.

I understand you wouldn't want to be on Tramadol too long , when you consider tapering it you may be better alternating the days for a week , you can also take standard dose of Paracetamol on both Tramadol on and off days. The following week 2 days off and one on . Then come off it entirely but allow the Paracetamol use.

If the Pain , which you are now used to worsens or builds up you may need extra help over more time , and should discuss it with the GP.

I have used this tapering plan for Tramadol many times over the years from different Pain issues and it worked successfully.

You can still have acute Nerve Pain rather than long term PN for up to 4-6 weeks after your Shingles rash has stopped.

It's the need to allow the time for this recovery of the nerves , wether you have Post herpetic Neuralgia long term or not which makes it important to have Patience with yourself , take similar Self Care as you would after any severe infection or injury , and wait for a month after the last spots are crusted or cleared before you consider Tapering your Steroids again.

If you try to Taper while still in Recovery and dealing with the Residual Pain and Fatigue of an infection you just put too much burden on the body , the withdrawal is horrible , it can cause a Flare which makes you unsuccessful , it worse requires you to increase your Steroids not just short term , but long term again.

Seraphina56 profile image
Seraphina56 in reply to Blearyeyed

Thank you. I'll certainly take your advice. Bought some supplements this afternoon. It helps to feel I'm doing something.

Hildalew profile image
Hildalew in reply to Seraphina56

I have seen suggestions somewhere reasonably respectable on the internet that therapy involving Vitamin B12 has sometimes been effective in relieving shingles pain...…. it could be worth exploring that suggestion …..

in reply to Hildalew

Yes. I think it's been quite successful.

PMRpro profile image
PMRproAmbassador in reply to Hildalew

ncbi.nlm.nih.gov/pubmed/304...

Even some semi-optimistic scientific backing. Probably does not harm.

Hildalew profile image
Hildalew in reply to PMRpro

Thank you.

Seraphina56 profile image
Seraphina56

Thank you all for still thinking of me. I no longer have the shingles pain thank goodness, but I had some awful withdrawal symptoms when I tried to reduce the Tramadol. So I’m on a very slow taper for that. I had the pain for three weeks and two months later I’m still reducing the Tramadol! I’ve got down from 400 mg a day to 100 so far. Then I’ll start on the Pred taper, dead slow and nearly stop I think. All this tapering has become a full time occupation.

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