Discontinuation of prednisone: After tow years and... - PMRGCAuk

PMRGCAuk

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Discontinuation of prednisone

Kaaswinkel
Kaaswinkel

After tow years and three months I managed to get to 0.5 mg and taking some paracetamol here and there and always a 10 mg amytriptiline tablet at night. However my singing voice was still poor, which is very traumatic and sad for a singer.

So now one week ago I took the bold or foolish step to ditch the prednisone completely and after one week my singing voice has improved. I use two times a day ibuprofen 200 mg and probably three times a day one paracetamol tablet 500 mg each, while still continuing with my amytrip at night. Yes, there is some more pain, and I know the pmr has not gone, we know the kind of pain pmr produces , but I can just manage the Joel thing. The fact that my singing voice is better for me is so important that I elect to put up with some more pain, and “ wait and see” what happens. I have to say I have never had “ a flair up “ like so many of us describe.

I am not after anybody’s advise whether this is a good or bad plan, I just want to know if anybody else has done this: ditch the steroids and replace it with NSAID s for the higher good of being able to sing, or any other higher good that you might have had, and what your experiences have been: did you manage it, or did u have to review your initial plan.

I know it is quite early to judge, ( one week of steroids only) and today I did have a blood test to see what the levels of inflammation are. Looking forward to hear your story. Kind regards.

31 Replies
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Wishing you very good luck with your decision

Kaaswinkel
Kaaswinkel in reply to Rose54

Thank you very much😉

I am so glad that you have got your singing voice back! It must have been devastating.

I am surprised that 0.5 was still adversely affecting your vocal chords. I wonder if some gradual healing had been taking place over time?

I am on 4 mg and I guess my voice is still croaky ( only discovered this trying to sing to my grandchildren). It gives me hope that yours healed like this. Best wishes for your future singing!

Thank you, you are very kind. Well we got a concert coming up and I tried singing alto, did not like it at all, so that when I thought, well forget it, I just stop the stuff see what happens. What u say is probably true, it was healing. Hope u be good soon!😉🌞😊

DorsetLady
DorsetLadyPMRGCAuk volunteer

Good luck - keep informed please.

Yes, I will keep you informed because it is quite a jump from daily o.5 to nothing....

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Kaaswinkel

I used a slow taper when I did it - fortunately without problem. But if you feel any return of symptoms you always have the option of just taking the odd 0.5mg a couple of days a weeks or so - whatever suits YOU!

Hopefully everything will go okay, but don’t be stubborn and ignore it! If anything PMR like raises its ugly head - nip it in the bud pronto!

I won t be stubborn, and I give it my best shot.

PMRpro
PMRproAmbassador

My loss of singing voice was definitely not due to pred. It happened at a fairly early stage of PMR symptoms. I wouldn't use ibuprofen long term even not on pred, its adverse effects are also severe even if different, whether in the short or longer term.

Meggsy
Meggsy in reply to PMRpro

Same here! I became croaky in the five months of gathering symptoms prior to diagnosis and pred. Am certain it was due to PMR.

I realise that, and will go for paracetamol mainly and some natural stuff

Stella3
Stella3 in reply to Kaaswinkel

Hi Kaaswinkel, I am a singer too. I dont think however that steroids have affected my voice. I am a soprano. I am down to 2mg now. I agree with PMRpro, you should not rely on painkillers or NSAIDs. Long term use might affect your liver and you should be monitored. Good luck to you and I hope you can take c/o your voice. I love my Chorale group, even though I am not a soloist....!

Kaaswinkel
Kaaswinkel in reply to Stella3

Thanks for your response...it shows how diverse the presentation of PMR....I will keep everybody who were so good to response posted😉🌞😊

Yellowbluebell
YellowbluebellAmbassador

Good luck with this hopefully last bit of your journey. Must admit I dont know whether I would be brave enough but that might be because there isnt something I desperately want to do that I cant at present!! Except sleep!! Please let us know how you go.YBB

Thank you, yes, I keep you I formed on the forum, but seven days no 0.5 is quite an achievement for me, and initially scary....

Sadie1024
Sadie1024 in reply to Kaaswinkel

I went 36 days on 8 mg Pred and was doing good with little to no pain up to about 25 days then here came the PMR back. Went up to 15mg one day then 12mg one day then 9mg then back to 8mg. I just done this so I am waiting to see what the results will be.

Kaaswinkel
Kaaswinkel in reply to Sadie1024

It is such an unpredictAble sort of an illness....two steps forward, then back again. So good to share each others experiences otherwise we go a little loopie!! Everything is normal and nothing is normal with this pmr, the only thing we have control over is our mind...take it as it appear, which is so super hard....😉

Wishing you the best!

Thank you.😉

I hope it goes well for you

Thanks so much. 😉

I think in general NSAIDs really do not work for PMR. It is pred or pred. If the NSAID does work the pain is usually something else. I do hope that you get on alright without the pred though, that sounds like good news.

Hi there I hope all goes well. I ditched the pred in April as I was worried about the impact on my teeth! Used brufen and had some steroid injections for bursitis. I managed 4 months but if you look at my posts I had to go back the the steriods this weekend. Did 15mg, 12.5 then 10 and now on 4th day I am at 7.5mg if I can manage on 5 I would be happy. But I am not a singer so wasn’t aware that steroid impacted in this way too. Hope your voice and body stay in good shape 😀

Kaaswinkel
Kaaswinkel in reply to JulieR2

Thanks so much for sharing your experience, and wishing you tons of health and tons of patience😉🌞

U are right about pred or pred... and I HOPE , with NSAID s , to be able to decrease the pain enough to manage without pred, while the PMR continues to work it’s way out... as we know, slower than snail mail!

I give it a go anyway...thanks for yr reply and everybody else, always very welcome😉🌞

Hello Kaaswinkel, I am more a watcher than a poster on this forum and have gathered a ton of useful information and advice.

A couple of the constant points that are made are that NSAIDs do nothing for PMR pain: and if pain is decreased with NSAIDs it is not PMR pain; if we are left with any pain after taking NSAIDs (and we have been diagnosed with PMR and have been taking steroids) it is likely that we have tapered too far.

If we continue to 'put up with' that level of pain, sooner or later it will produce a flare which will mean, pretty much, going back to near the beginning of the pred journey and taking slow steps again. I've no doubt that revives at least one of the stressors, frustration, which got us into this whole situation in the first place.

I totally understand your feelings about your voice and singing - many years ago I loved singing, had a good voice and sang a lot. As I grew older singing was also something that relieved stress for me. But slowly, slowly, the stresses of other stuff grew too powerful, my voice deteriorated and I could no longer get that joy from singing so I pretty much stopped. These days I cannot think about my singing without, as now, tears coming to my eyes.

I've made a few attempts to get back, and I know the muscle is still there, probably capable of being exercised back into health, if my experience of PMR means that I am more 'chilled' than I was, but I haven't yet put my mind to setting up that 'exercise'!

Maybe your post will prove to be the spur to my doing that. Thank you.

Kaaswinkel
Kaaswinkel in reply to Hildalew

I am picking up my ongoing saga with PMR......after my five day stint cold turkey from being on 1 mg , 0.5, 1.5 mg on a long time, my body pains came back, and dictated me to take 1.5 for about two months. The symptoms gradually increase over a week and 1.75 over a week did not do the job, but 5 mg did. This is what I have now taken fro five days and the symptoms have settled down. Hurray, and how right you people were! However.. I would not have believed what you said until I felt it myself....that is what I am like.

In the meantime I have continued with my singing lesson, and have to admit that the voice was not so much affected by the medication, but by sloppy technique creeping up over the years....quite a revaluation. My teacher uses The Estill technique, for anybody interested in singing. Yes, now I will hang around on my higher dose, until matters stabilise....yes, I have read this a short time ago from somebody who went from 2.5 to 2.00 mg and the body did not gratefully recieve that either, and the lady went back on a higher dose.

Thanks for all the advise and overall the sharing the sharing the sharing!!!

Much kindness for all.

Regarding the singing...it obviously means a lot to you...too. I decided to get a few lessons of a teacher that was recommended to me which is helpful. It feels “ I don t heave to sort it all out myself”. Maybe that is something you would want to think about, and yes... there is always the cost....thank you for your comments, very much appreciated. 😊👍💐

Hi I AM Kaaswinkel and today after eight days doing pretty good on NONE prednisone, I got my setback.....severe, yes, severe tiredness, inability to think, and the well known PMR pain across upper back and shoulders back again .....hello! I know you PMR.....

So I have learned that my PMR, also, does not like, “cold turkey”, and does not accepts being seduced by paracetamol and a touch of nurofen...

Took a one mg prednisone tablet, put my nighty on and rested for two hours....feeling already much better, although I have not tried singing, which was the whole start of this experiment.

I WAS a little “ discouraged” but we are brave people, and face our PMR with a smile, and... now back to whatever my PMR dictates me. It was tremendous how much support I felt from all of you and. Thank you all.....if I would not have tried I would not have known...nobody died... so all is well 😉🌞😊

i have been off prednisone for a month.i have some stiffness but it is manageable. i have taken tyenol arthritis a few days which did help.but most days nothi ng .

Kaaswinkel
Kaaswinkel in reply to piping9

Thank you for your reply.....if it is not too much trouble would u pl tell me about how long you have had, or had PMR, and how you tapered.

Thanks so much. 😉🌞😊

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