I should have known better

[yorkieme]

Last night I kissed my wife goodnight and wished her a Happy New Year saying that it was going to be a good one.If anyone deserves a good year then she does.

I had very little sleep but having come off Morphine "cold turkey," as they say I have had very little sleep for weeks so I did my usual thing and went to the guest bedroom/spent time on here reading lots of comments.

I have been reducing Pred' under the instruction of my rheumy,10mg one day then 7.5 mg the next,alternating each day and now three weeks in. The intent to end up on 7.5 mg prior to the next stage.

For a few weeks I have had a very low level pain in both triceps,I rather hoped it was connected to my broken spine and indeed the G.P. confirmed the connection between T4 and my upper arms and suggested that it was probably part of the healing process. The pain very very slowly increased and last night it spread across the back of my neck,shoulders and down through my triceps. My hands also feel a bit stiffer and while in the bathroom I had the severe shaking I used to get months ago.

Could anyone please tell me if this sounds like a flare ? If so can I increase my Pred' for a few days only and by how much ?

I know from experience that the emergency phone number for 24 hour calls isn't 24 hour at all,I usually get a call back a couple of days later if I'm lucky.

This means that I am desperate for advice,I already have sufficient spinal pain and take codeine for it so any advice would be greatly appreciated.

I can wish you all a very very happy New Year but I had best leave out the kiss of death !!!!!

Take good care,

Kind regards,

ExpatYorkie.

[DorsetLady PMRGCAuk volunteer]

Hi, Quite likely if you are alternating 10mg/7.5mg - that’s a very big difference. Any particular reason why you are doing that and not stepping down in 1mg reductions?

You could try 10mg again for a few days.....and see if things improve whilst you are waiting for medical advice.

But TBH, I think the tapering regime is the issue - and if it is, and you continue to follow it, the outcome is likely to be same again.

[yorkieme in reply to DorsetLady]

Thank you for such a quick response. My rheumy is keen,(maybe too keen,) to get me off Pred' as she is convinced I have steroid induced Osteoporosis and hence the cause of my broken vertebrae. She seems keen to push me on to MTX but I have held out so far.I have four weeks left to achieve her target but I think I will do it the way you, Snazzy and Mrs Nails feel that I should.

Three weeks ago I told my wife what the response would be from you and a few others.

Once again thank you.

Regards and best wishes,

Mike.

[MrsNails in reply to yorkieme]

Mike, l take MTX & l’ve had my ups n downs with it but l still feel it’s been my Saving Grace - taking me off it for a year did far more harm than good, then reintroducing it slowly at lower doses has been tough but l feel l’m back to where l was.....

It’s a consideration & possibly preferable to the bigger reductions in your Pred Dose.

You’ve a lot to think about but hope you feel better soon.

Angela 🙏🏼

[Marijo1951 in reply to MrsNails]

I tend to agree with that. I've been on MTX for 3 years now and, on the whole, I think it has been helpful. The only downside was that nobody told me I shouldn't take it when I was on strong antibiotics to heal my leg which had been ripped open in a fall. I now know that, if my immune system needs to work overtime for any reason, I should temporarily stop the MTX.

[MrsNails in reply to Marijo1951]

Yes, same for Surgery, you need to stop it but it’s pretty forgiving & you don’t notice not taking it for a good while......

[SnazzyD]

I once tried alternating with just 1mg and my body wasn’t happy. Fluey achey the day after the new dose. A 25% swing would have been a no no. Why did they want this regime? I know some docs believe alternating doses helps kick the adrenal axis into gear but this dose is still a tad too high for that really.

[yorkieme in reply to SnazzyD]

SnazzyDPlease see my response above. Happy New Year.

[MrsNails]

I’m not happy about that drop Yorkie even if it is alternate, the body can’t cope with the constant up n downs, you’ll need to forgive me l can’t remember how long you’ve been on Pred; but go back to 10mg for a week & see how you are, then come down in 1mg minimum, l’m doing 0.5mg between 12.5mg/12mg & on MTX.....

With your pain Meds take them regularly ie 4or6hours & maintain that as pain is easier to keep under control than it is to rein it back in if it gets out of control.

Cold Turkey on Morphine is not fun, tapering is the way forward, l had it for bone pain post chemo. But sufficient doses of Paracetamol & Codeine work well, watch your bowels, more fruit 🍎

I will wish you a Better, Healthier New Year as we all deserve that! 🥂🙏🏼

Take Care & Keep Safe & Well

MrsN

[yorkieme in reply to MrsNails]

MrsNails,Thank you for your quick response,I couldn't have hoped for the three that I received.(DL & SnazzyD)(I hope PMRpro is o.k. yet another well polished diamond,xx)

I have been on Pred' since last November but I have a G.P. insisting that I have GCA and a rheumy insisting that I don't have PMR but I do have steroid induced R.A. and Osteoporosis of the spine due also to Pred'

It has been a nightmare,first of all fighting my lack of knowledge and second fighting the system.

I asked my G.P. to start reducing my morphine usage after almost four months,( 100mg/day plus Oramorph when needed,) the answer was that it is too soon based on the pain that I had then.

Three weeks ago I looked at the continuing damage to me and my marriage and decided that however painful I had to do it.

Fair does to my G.P. as he didn't rip me off a strip and in the final agonising days supported me.

I do need to heed your advice reference pain control,it is still pretty severe and now this but I cannot afford to give up.

With the advice that I have received on here I have more support than the medical people so fingers crossed.

Happy New Year to you and everyone supporting this forum.

[MrsNails in reply to yorkieme]

Pain is the enemy so that needs addressing, are they treating the Osteoporosis?

And remember MTX is the Gold Standard Treatment for RA so very much worth a consideration.....

The side effects are manageable unless you are very badly affected like Pro was your body adjusts & they start you on a lower dose to see if you can tolerate it.

But if there is any possibility of GCA they cannot take risks with your vision....

If you have any questions just ask 🙏🏼

[yorkieme in reply to MrsNails]

I am taking Adcal and vit'D with Alendronic acid. I have a six week supply of MTX,epipen but four weeks ago the senior nurse told me I needn't take it,she will call me 2nd Feb' to review matters. If I have to go on it then so be it,just a shame you guys can't prescribe it.lol.Once again let me say that I do value your time,all of you,heaven knows what I would do without you but don't tell my wife.

🥰😍😍😍xxxxxx

[MrsNails in reply to yorkieme]

Your secrets safe with us 😉

Do a bit of reading up on the MTX before 2nd Feb & get a good Pain management regime going, that will help you enormously.

Hang in there! 🙏🏼

[PMRpro Ambassador]

I agree with the rest - a daft way of tapering pred, unfair on the body.

My suspicion is that the PMR may be starting to build up - and a tightening muscle is increasing the T4 effect:

physio.co.uk/what-we-treat/....

(that's for the anatomy not the physio suggestions)

Remind the lady that increasing muscle pain leads to immobility and that is also a risk factor for osteoporosis.

[yorkieme in reply to PMRpro]

Thank you again,hope you and OH have as happy a New Year as possible.xx

[Telian]

I’ve read the other replies and agree entirely the taper your Rheumie suggests is not going to work.

Go back to 10mg and reduce by 1mg. I can only do 0.5mg. You’ll get there just as quick if not quicker than the yo-yo effect you’re heading for.

Best wishes for a healthier New Year.

[yorkieme in reply to Telian]

Bless you and thanks,I can understand my rheumy wanting to speed things up but just as you and others say it doesn't look good for me as things stand.I know it isn't a race to get off Pred'( I have learned that big style,) so I will be doing as suggested. Happy New Year to you.

[HeronNS]

I see PMRpro has mentioned it - muscle tension. Your pred taper plan certainly isn't helping, but tense muscles, also referred pain from another site, can cause awful problems. My physiotherapist when I first went to see her said my back muscles were like bricks and did stuff like "dry needling" and massage to loosen the muscles and reset the electrical signals so they were no longer in spasm. I had no idea. She told me spasmed muscles can even cause fractures in vulnerable people! The very painful hip I believed would require a hip replacement turned out a) to show no sign of OA when x-rayed and b) cleared up completely and so far permanently once whichever impinged nerve in my spine was released through therapy. (That painful hip had been relieved early days on pred and returned as dose reduced, slowly, from 15 mg to about 8, it was evidently not returning PMR!)

[yorkieme in reply to HeronNS]

Thank you for your advice,how lucky the day when I picked up on this forum. I wish that I could get to such as physios but sadly the virus issue prevents all of us finding more help.Once again a big thank you,I do hope the New year is kind to you.

[HeronNS in reply to yorkieme]

I did have a virtual visit with a physio during spring lockdown. I don't know if that would help in this particular case, but it might be worth it if possible. My physiotherapist will do as little as a 15 minute virtual visit, or longer, and charges accordingly, so if something like that is available it wouldn't be a big commitment. At the time I found a very hot water bottle (wrapped) helped the hip no end, but that's something you'd need to decide for yourself. Sometimes cold is better than heat. I think in my case the heat relaxed the muscles more, and finished the job the improved back had begun. I'd had hip pain for quite a long time and I can truthfully say that for five years now it hasn't come back!

[Dambusters]

My GP told me that when I got down to 10mg I should taper by 0.5mg....to take 1 x 5mg tablet with, half a 5mg tablet and 2 x 1 mg tablet perhaps for a month, but for at least 2 weeks (I am the one in a hurry to get rid of steroids). I take strong Vit D because I fractured my sacrum years ago and now have arthritis in the spine, one artificial hip and the other one not so good these days. She has told e I might never be completely free of them but that 10mg is a comparatively low dose for my PMR.

I tried doing what you are doing and had a flare up and had to go back to 15mg. Now back to 10mg. and coping.

All the best for 2021.

[katiemills]

I agree with everyone . My experience was that I really struggled to reduce once I was down to 15mg and I decided to take the Methotrexate my rheumy had offered me several times . It has definitely helped me reduce , 0.5 mg at a time on Dorset Lady’s taper plan. I’m down to 9 mg and about to try 8.5 mg for the second time. I had a flare last time I tried.My GP and rheumy accept that I might never get any lower than 7 mg and still be able to lead a relatively comfortable life , so they’re not pressurising me at all.

I have a lot of pain in my spine ( two operations ) and then I broke 2 vertebrae a few years ago. I find tramadol helps me with the spine pain very much. Amitriptyline helps with the pain at night too.

Have you been referred to the pain management clinic? If not, I’d request an appointment. Good luck !