Tapering - an update : This is an update from my... - PMRGCAuk

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Tapering - an update

Indigo2417 profile image
25 Replies

This is an update from my last post 7 days ago. As I mentioned last time, I had a Face2face appt with the GP yesterday. Managed to get in and out of the car and travel to and from ok. Hadn’t met the Gp before. Have only spoken on the phone twice, so there’s no previous continuity. I explained about my back getting a bit better and then hurting it again. Also, about it coinciding with my shingles jab and having reduced from 8mg Pred to 7mg 8 days previously. Said I’d started getting in neck and shoulders and down arms so went back up to 8mg. He examined me and pronounced that it isn’t PMR pain. ( It isn’t now. I know that). Explained again what it was like then, when the neck pains etc started, and that I thought with the back pain, the shingles jab and the reduction to 7mg it was too much for my body to cope with, so went back up to 8mg to avoid a flare. He didn’t seem to grasp this. Said the pain is not PMR and it would be ok to go back to 7mg. Told him I wasn’t happy with that and I thought it would be better to wait until my back is better before I try again and that next time I’ll do 7.5mg. He seemed more concerned about the effects of Pred on my muscles, than the Naproxen and Pred together. The upshot is that he’s given me some more Naproxen 250mg and ibuprofen gel, plus he offered me some muscle relaxant, Baclofen 10mg. I’m not generally keen on loads of tablets, but I thought I’d try them to see if they will help with the muscle spasms. Hopefully, to break the cycle of pain-spasms-pain. I’m having 5mg at night and 5mg in the morning. He’s given me 20, but I hope I won’t need them all and it does seem to be a low dose. He suggested I try reducing Pred in 2-3 weeks and airily 1mg at a time and when I get to 2mg I could change to a half mg reduction. So I decided to ignore this suggestion and my plan is to wait until my back is better and then try a slow taper to 7.5mg and see how I get on. He’s not asked to see me again for a review, so hopefully I’ll be able to carry on with this without interference.

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25 Replies
Wouldlovetorun profile image
Wouldlovetorun

What a shame Indigo2417💐 you must have come away feeling quite despondent and not listened to.I hope your back pain improves and you feel v much better soon.

x

Indigo2417 profile image
Indigo2417 in reply to Wouldlovetorun

Thank you. I was a bit disappointed, but knowing the responses that other people on this forum have had, I wasn’t entirely surprised. Armed with the advice of the experts on here and my gut feeling, I just thought ‘ you carry on with that idea, sunshine and I’ll do my own thing’

123-go profile image
123-go in reply to Indigo2417

Go with your gut!

piglette profile image
piglette

Having worked with the pharmaceutical industry for over thirty years I am quite despondent about the lack of knowledge of drugs and the action by a large number of the medical profession.

Indigo2417 profile image
Indigo2417 in reply to piglette

I was a bit surprised that he was more concerned with the effect of Pred on my muscles than the mixing of Pred and Naproxen. As soon as I can, I shall leave off the Naproxen. I did have an idea this morning, though. The pills are uncoated and have a groove in the middle, I I thought I could always try cutting a 250mg in half, rather than taking the full 250mg. Talking about his tapering suggestion. Every 2-3 weeks will be ok, he said, vaguely suggesting that I could be finished in about 6 months! This is when I decided to ignore him.

PMRnewbie2017 profile image
PMRnewbie2017 in reply to Indigo2417

Just a clinical point. Taking 125mg of Naproxen probably won't do anything. With drugs you take the therapeutic dose or don't bother. This is because you need to attain a certain level of drug in the blood for it to work. The maximum daily dose for naproxen for general pain is 1gram daily (1000mg). The number of times a day you take a drug depends on the length of time it stays active (the half-life).

Have you tried Paracetamol?. It's very underrated and you avoid the gastric irritation issues. But remember no more than 8 tabs in 24 hours otherwise you damage your liver.

Indigo2417 profile image
Indigo2417 in reply to PMRnewbie2017

Thank you for pointing that out. I wasn’t aware of it. Before all this back problem, I used paracetamol, generally at night if I woke up and my hips were painful. I try to use them sparingly, as I’m aware that you can get a rebound headache if you take too many, too often. Before I spoke to the doctor initially about my back, I did take two co-codamol at night, but that was a last resort for me as they tend to make me a bit woozy the next day. Anyway, I think I’m starting to feel a bit of improvement after starting the Baclofen, and I shall stop that and the Naproxen as soon as I can. I do try and exercise common sense with painkillers generally.

PMRpro profile image
PMRproAmbassador in reply to PMRnewbie2017

The bugbear with OTC ibuprofen recommended doses! I find only i,v, paracetamol does anything - then you are cooking on gas!!!!

Indigo2417 profile image
Indigo2417 in reply to PMRpro

The physio that I saw about my hip bursitis wasn’t too keen on me having ibuprofen. She said paracetamol would be better. Have to say when my back was first bad, nothing really cut the mustard. Not even the co-codamol. Thankfully, now the Baclofen seems to be working with stopping the muscle spasms. My back is still aching if I try and stand for too long. I have to sit down and rest with a heat pad on it.

PMRpro profile image
PMRproAmbassador in reply to Indigo2417

How did she work THAT out? NSAIDs are the usual recommendation for the antiinflammatory effect. Paracetamol doesn't have much. The pain clinic woman here did needling for the spasmed muscles and I found that has really helped. Wish she'd be a bit more gung-ho about it though, far too softly softly and it doesn't catchee monkey!

Indigo2417 profile image
Indigo2417 in reply to PMRpro

Not sure how she got to that, unless it was to do with protecting my stomach. Have never had injections for muscle spasms. Trouble I had when it all started was that it was bad and I didn’t think I’d be able to get into the car let alone travel, so it was a catch 22. If it was well enough to get in the car, I didn’t need a face2face with the GP or a visit to ED and I don’t know where I’d have got an injection hereabouts.

PMRpro profile image
PMRproAmbassador in reply to Indigo2417

My rheumy here is the guy for injections for muscle spasm. I ended up in the ED a couple of years ago because I live alone and could not move because of muscle spasm. The ED was useless - i.v. pain relief, did zilch. Luckily I had a rheumy appointment an hour later so they took me round there. Christian got out the lignocaine and did needling over my entire back after a high dose NSAID infusion. I walked out and got there next day for the repeat under my own steam!

Indigo2417 profile image
Indigo2417 in reply to PMRpro

My private rheumy is 30 miles away. I don’t know if I’d have been able to see the NHS one because there’s such a long waiting list.

123-go profile image
123-go in reply to piglette

The pharmacist attached to my new GP practice rang the other day about my prescription request querying the fact that I hadn’t requested pred or Lansoprazole. I explained that I’d tapered pred and was at zero and that I’d never taken Lansoprazole. In my notes on the NHS app he’d written, “The patient was coherent and spoke in full sentences.” Made my day 😀.

PMRpro profile image
PMRproAmbassador in reply to 123-go

Love it ... Bear in mind though - he had probably had a load of the other sort!

On the GP programmes I watch, I despair for the poor GPs when they meet the chumps who haven't taken their medication and wonder why they are still ill/have raised BP/in pain.

"I don't believe in painkillers" - then why go to the GP complaining of pain since that is all they can offer for most things.

piglette profile image
piglette in reply to PMRpro

I think it is the demanding ones that would really get up my nose.

123-go profile image
123-go in reply to PMRpro

Exactly!

piglette profile image
piglette in reply to 123-go

Love it. Oh for a good education.

123-go profile image
123-go in reply to piglette

😂😂

Thelmarina profile image
Thelmarina in reply to 123-go

Wow! Put that on your CV! 😂

123-go profile image
123-go in reply to Thelmarina

….or in my dating app profile 😂🤣🤣!

Thelmarina profile image
Thelmarina in reply to 123-go

😂😂😂

Sophiestree profile image
Sophiestree in reply to 123-go

that made me laugh out loud 🤣

PMRpro profile image
PMRproAmbassador

They have these wonderful theories - and we know the practice!!!

Merryfield profile image
Merryfield

So sorry you have been through a devil of a time. This is not scientific advise, but If I were in your sneakers, I would just deal with one issue at a time, starting with pain. Put pred reduction on a back burner for a few weeks.

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