In a muddle now with Pred tapering

[cassie1208]

I was on 15mg from Oct 2015 and before Xmas I cut to 13mg.

I was doing fine until a week ago with all stress of Xmas and our town being badly flooded.

I have a bad ache deep in my buttock which can be felt as a shooting pain in leg (on one side only)

18 months ago I was diagnosed with sciatica with the piriformus muscle in the buttock affected - it went away and I was prescribed Amitrypoline( but I cant take these with Pred. This pain I have now is more or less the same so I think the old problem has returned.

I feel disappointed to say the least that I decided to increase first to 14mg and then to 15mg as I thought it was a PMR flare up. So I am back to square one on 15mg and the pain deep in the buttock is still the same and very uncomfortable. I dont think this pain is to do with PMR but it is easy to blame it.

My questions are:

When should I have a go at tapering again and to what as I am back on 15mg which was my starting dose 10 weeks ago?

Should I wait until this pain goes which may be ages before I start to cut again?

If you have a pain which may not be associated with PMR - do you take paracetemol or similar?

Any advice appreciated - thanks.

I

[DorsetLady PMRGCAuk volunteer]

Hi cassie.

Hope things regarding flooding is better for you now.

I have OA so take co-codamol for that, it may help your sciatica- ok to take with Pred, although prone to constipation if you take too many. I am prescribed upto 8 a day, but usually just take one mid morning unless the pain is really bad. Hot or cold patches, gel or spray may also help - it's a matter of trial and error really. But not ibuprofen gel unless used very sparingly.

Suggest you stay at 15mg for a couple of weeks, and then try reducing again. And good luck!

[cassie1208 in reply to DorsetLady]

Hi Dorset Lady -Thank you for you quick advice- straight away when I got the pain I thought it was a flare up PMR but my neck and shoulder are pain free now. I think I will take your recommendations to stay on 15mg for a couple of weeks- it is good that I can still take othr pain killing things but not ibuprofen. I am learning a lot from everyone.

My first reaction on pain anywhere at the moment is to assume it is PMR but I have to learn it is not the case. But I know I have been over doing things during the past 2 weeks and I think this is telling me to slow down. I hope I can resume swimming soon but at the moment I have no energy.

[Celtic PMRGCAuk volunteer]

Cassie, it does sound like a return of your sciatic pain. A good physio should be able to sort out the problem with gentle massage of the area from where the pain emanates. A couple of people I know who have recently experienced similar sciatic pain have found that a couple of sessions with a Bowen therapist solved their problem. I do hope you can get it sorted soon - it's a horrid pain and I know from experience that it can go on for many months unchecked. Once that pain is sorted, you should be able to return to your previous steroid dose quite easily.

[cassie1208]

Celtic Lady - Thanks- it is advice like yours that enables me to relax and realise that I am not alone - sometimes I get more stressed at night time as things compound. Yes it is a horrid pain and I will look into Bowen therapy. I have been visiting family and sleeping on an air bed so it has probably made it worse - after sitting down and I get up it is really bad.

Do you think I should wait until this pain has completely gone before I reduce again?

I am fed up that I am back where I started on 15mg - its psychological I think as when I reduce even by a small amount I feel I am getting there and now I feel I am going backwards!

[piglette in reply to cassie1208]

Hi Cassie, I have recently got sciatica too, it really is excruciatingly painful. My GP said take paracetamol which were worse than useless. I then increased my pred from 7mg to 10 mg which seemed to make a difference, but it may have just been in my mind! I then reduced to 9mg pred and within twenty four hours I was in agony again with the sciatica. Of course it may just be coincidence, but I have increased the dose again and am worried about reducing until the sciatic pain goes away, which at the current rate could be months. My GP has given me co codamol which work after a fashion, but could be better. I am going to try a physiotherapist next. Sadly Bowen did not work for me.

[cassie1208 in reply to piglette]

Piglette

Thank you - you understand what I am going through - it is quite scary the pain after I have been mostly pain free for a couple of months. When I got sciatica before, my physio gave me exercises to do in the pool stretching which may be good but I am in too much discomfort to get there at the moment. Your advice much appreciated..

[piglette in reply to cassie1208]

Cassie, I have tried to go swimming and it seems to make it worse. I wish I could find an answer. I do find that the pain does vary throughout the day and can be quite good, then much worse again!

[Celtic PMRGCAuk volunteer]

Cassie, even though you now feel your pain is related to sciatica rather than PMR, I would be inclined not to reduce the steroid dose back down yet, just in case, otherwise you could find yourself getting into a yo-yo situation with the doses which is never a good idea, but do try and get an urgent appointment with a Bowen therapist, then once the sciatic pain is sorted reduce back down again, firstly via 14.

[cassie1208 in reply to Celtic]

Celtic

Thanks for your advice. I am looking in to Bowen therapy as I am not familiar with it and the benefits for some people. I hope it is gentle as I went to a physio who specialises in sports injuries and I felt he was deep and intensive with the massage.

I think your advice not to try to reduce yet is wise.

[PMRpro Ambassador in reply to cassie1208]

Bowen is VERY gentle and that is why some of us suggest it - if you have PMR massage can make things appear worse and take a while to recover from which is hardly the purpose of the exercise.

The University Hospital of North Durham Pain Clinic uses Bowen for patients with chronic pain - they must think it helps! Here's a link to their site which tells you a bit about it - click on the Treatments link on the page that comes up

healthnorth.co.uk/uhnd-pain...

It does sound as if you might have piriformis syndrome - the sciatic nerve passes through the middle of the muscle group and if the muscle is in spasm it pinches the nerve and causes pain. Bowen or a good physio would be my suggestion - in that order. Painkillers might take the edge off the pain - but they won't do anything for the cause.

[Joyful13]

I have been taking amitriptyline 10-20mg for 3-4 months as prescribed by my neurologist for headaches without any problems with the Prednisone 40mg I have PMR and Giant cell arteritis.

My rheumatologist and internist are not concerned about taking the amitriptyline.

Why did they think you should not take this med with your Prednisone.

Sorry to hear that you are having so much pain in the buttocks area. Hope you get some relief soon.

[cassie1208 in reply to Joyful13]

Thank you - I will ask my GP about Amitripolene as I just thought I couldnt take it - so thanks for that -

[polkadotcom]

Did you find that the amitriptyline and Pred together didn't suit you? I ask because I have been taking both for years now and have never had any problems.

You might find you get some help from the alternative therapies e.g massage, Bowen therapy or acupuncture?

I do think that you should go back to your doctor (or whoever is managing you) to explain about the sciatica and the increase in Pred. Unless you tell them they won't know what has happened.

[Zhenya]

Hello Cassie

Last summer I had sciatica in my right leg, so painful that I was virtually unable to walk. Excruciating in bed too. My GP prescribed 2 paracetamol and 2 codeine, alternating every 2 hours, plus as much bed rest as possible. I did this religiously for about 5 days, and the pain gradually subsided. It worked! She told me not to consider decreasing the Pred, which I didn't for several months, and then when I did it was not successful in any case. I am currently on 10mg and am due back to the GP this week for further discussion.

[cassie1208 in reply to Zhenya]

Hi Zhenya

Thanks for your advice - it is encouraging to know about the pain relief - at forst I thought it was a PMR flare but I have had sciatica before so it is the same,

I was on a long train journey yesteray as I had visited family to see my new granddaughter born Xmas Day so it was a wonderful visit despite the intense pain.

[PMRpro Ambassador in reply to cassie1208]

You got there then! I was wondering. Where the photo?

[cassie1208 in reply to PMRpro]

Yes I got there! I just had to and had a good time apart from sleeping on an air bed and hobbling around in pain everytime I I had to sit down and rock the baby for hours - lovely!

10 hour journey back yesterday which went smooth but even so tired today. Photos on my phone have to work out IT!

[cassie1208 in reply to Zhenya]

I hope your visit to GP goes well this week.

[Ida-June128]

A friend of mine suffers from sciatica and visits an osteopath who can relieve the problem in one session. Do you have a good one near to you?

[Suedeshayes]

Hi, I have just read your post and you mentioned that you can’t take amitriptyline with Prednisone. Why have you been told not to? I take 10mg of amitriptyline each night for a nerve problem in my foot and I take Prednisone for my polymyalgia, and don’t seem to have any problems. My doctor has never said not to.

Sue