Je suis de retour pour me plaindre un peu.
Diagnostiquée en mai, j'ai réduit les stéroïdes de 15 à presque 8 mg, maintenant deuxième tentative échouée et maintenant de retour à 9. Grrr.
Je ne sais pas si je suis plus frustrée de devoir augmenter la dose à cause d'une poussée pour la deuxième fois en 4 semaines, ou que je ne semble pas être consciente que cela peut arriver à tout moment.
Je ne jardinais pas ou ne soulevais rien, je me tenais simplement dans la cuisine pendant quelques heures à décorer une boîte sur 3 ou 4 jours.
La dernière fois que j'ai réduit, j'ai eu une poussée après une semaine, cette fois-ci cela a pris deux semaines et je me sens comme... (pas très bien).
Alors conseillez-moi, dois-je rester à 9 mg ? et pendant combien de temps puis peut-être réduire à 8,5.
Cela semble si difficile, alors que cela ne devrait pas l'être.
Mentalement, je me sens mal, je ne peux pas prendre de décisions et quand je le fais, je change d'avis, les stéroïdes font-ils cela à vous ?
Je n'avais aucune idée que c'était un chemin si accidenté, et je ne devrais pas me plaindre, je suis sûre que beaucoup d'entre vous ont pire que moi.
Tout conseil serait utile.
Merci
Julia
It's discouraging isn't it? Are you reducing a mg all in one go, like one day you take 9 and the next and thereafter you take 8? Or do you alternate the lower dose in over a few weeks, gradually increasing the days you take the new dose until you are completely on that new dose? It's called the dead slow nearly stop plan, and it helps avoid steroid withdrawal pain which is so much like PMR we think we are having a flare.
I had trouble when going from 10 to 9, so after I stabilized again at 10 I started using DSNS method, and have now got down (I think) to 2.5 so I can attest to its effectivelness. It's slow, but it works for many of us.
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
as you probably know, pred does not cure PMR, just manage the symptoms and enables us to live semi-normal life. The right dose is the one that you can live with. If that is 9mg for the time being, so be it. Trying to reduce will only cause you frustrations. Maybe after a month or so, you can try 0.5mg reduction using DSNS method. You don't win the prize for fastest reducton...just flare.
If you have got down to 9mg in 6 months you haven't done badly. I had a flare in February - I've only just got to 9mg again. That's after 12 years of PMR and 7+ years of pred.
But you are NOT heading relentlessly for zero pred - you are looking for the lowest dose that manages the symptoms as well as the starting dose did. That means that one dose manages them - the next one down doesn't. It sounds as if you have reached that point for now. It doesn't mean you WON'T get lower, it just means not yet. Even using the Dead Slow approach that Anhaga has given you the link for you won't get lower than the lowest dose that is enough to manage the symptoms at any given stage.
If you start at 15mg and the "right" dose for you is 9mg, then you will reduce with no problems down to about 10mg, then it will get more difficult. If your "right" dose is 5mg you will be able to reduce further easily and quickly - but whatever your "right" dose you will get a return of symptoms if you overshoot. Steroid withdrawal starts immediately you change the dose if it is going to happen - your return of symptoms after several days at a new dose is far more likely to be due to the new dose being just slightly too low and allowing the inflammation to mount up again until it reaches the point where it overflows and you feel it.
Both PMR itself and pred can mess up the executive decision process - we've all been there. I don't have a problem with pred - I can't do it for food and cooking complex meals. It used to be my hobby.
And in case you haven't already gathered - the pred is ONLY managing the symptoms, nothing more. It isn't doing anything about the disease process, that is an autoimmune disorder that is causing your immune system to attack your body tissues in error. that is still chugging along in the background. It's as if you have flu or a really bad cold going on and you are dosing yourself with cold remedies to feel well enough to go out - doesn't change the viral infection at all. That only happens when your immune system sorts it out. In our case - it only happens when the immune system sorts itself out and stops damaging body tissues and causing inflammation.
Stop at 9mg for the moment - one group likes to keep patients at 10mg for a year and finds that reduces the flare rate from 3 in 5 to 1 in 5. Give it a couple of months and try 1/2mg again - if it doesn't work, don't stay down at 8.5mg. Forcing a reduction that your body isn't ready for won't work - except to cause a flare.
Bonjour,
Désolé pour la réponse tardive,
Je reçois normalement une alerte si je reçois une réponse.
En tout cas, lors de ma dernière tentative, mon médecin généraliste m'a suggéré de prendre un 8 et un jour 9, pendant une semaine, ce qui a semblé fonctionner pendant quelques semaines, puis de réduire à 8, ce qui était bien, je me sentais bien jusqu'à la semaine dernière et je me suis senti mal depuis.
J'ai augmenté mon 9, bien que mieux, mon énergie a disparu.
J'espère que vous allez bien.
Bonjour,
Merci pour vos gentils mots,
Je vais rester à 9 pendant un moment, puis je vais utiliser la méthode lente et morte.
J'espère que vous allez bien.
Bonjour Eileen,
Ravi d'avoir de vos nouvelles,
Je suis reconnaissant pour tous les conseils que je reçois sur ce forum et votre expertise est rassurante, j'ai eu l'impression de devenir fou.
Je vais rester à 9 pendant un moment.
Je me fais l'illusion que plus je réduis la dose rapidement, plus le PMR disparaîtra. Faux, je suppose.
Je veux juste pouvoir faire des choses sans en payer le prix physiquement pendant des jours après.
Fin des plaintes.
J'espère que vous allez bien.
No - doesn't work that way round! You need the pred to manage the PMR, you will only get to a lower dose when it has gone.
It's all about pacing - there are things I can't do but not many. I know what I can manage and stick to it. Very occasionally I overdo it and know about it, usually of an evening where I "come over all funny", but going straight to bed and sleepimg until next morning works almost every time - sometimes it is a major struggle to get undressed and teeth are ignored! But you do get to a stage where it really mostly isn't too bad,
There is a link for pacing stuff at the bottom of this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
I agree with the other advice that you should stay at 9 for a little while. But try to rest, get other things in your life more relaxed, and try 8 again in a little while, perhaps through the dead slow method rather than alternating. I often have sort of kicked the tires with a reduction, just testing you know, to see if it will take. And sometimes the first time it doesn't take, but the second time it does. I have never let myself get to a full blown flare, but have skirted the edge of the volcano a few times. Most recently when I was attempting to get to 2.5 from 3. But, you know, the other day, nearly through my second attempt, I was thinking I would take 3.5 one morning because I really didn't feel all that great. However it wasn't really PMR as I remembered it. Just a generalized malaise. I looked at the 1/2 5 mg and the extra 1 mg sitting in front of me and something said to me, put that 1 mg away. Give it a bit longer. So I did, and the very next day I had turned the corner. In fact it's quite extraordinary how well I've been doing the last few days. No more 3 mg doses, completely on 2.5 for a couple of weeks now, so fingers crossed it's worked this time. This is the beauty of the DSNS method. The first time I tried going to 2.5 I stopped just over halfway through as I experienced pain returning to my shoulders, which I hadn't since starting pred. It was easy to go up that extra 1 mg for a few days, then settle back to the 3 mg for a few weeks before trying the taper again. I plan to stay at 2.5 for a while as I know it's pretty knife edge. This long story is really just to encourage you that at some point, going slowly enough, a taper will work. Even if you have to try just 1/2 mg at a time and use the dead slow method. As Eileen says, it isn't slow if it works! It has taken me just over three months to successfully, I hope, complete taper from 3 to 2.5.
Votre encouragement est si apprécié.
Vous avez si bien réussi, je vais rester à 9 pendant un moment, 5 ou moins semble être un long chemin.
Mais c'était aussi le cas pour 15-9, je dois persévérer, et la patience je dois travailler.
Merci beaucoup,
Je sais que vous avez raison, il faut prendre son temps et être patient, Hmm ce n'est pas facile, mais nécessaire.
It does seem a long way away. Like holidays when we were children. But come they did!
C'était moi !!!
"Mentalement, je me sens mal, je ne peux pas prendre de décisions et quand je le fais, je change d'avis, l'utilisation de stéroïdes fait-elle cela ?"
Cela s'appelle "brouillard mental" et est un effet secondaire de la pred. Ce n'est qu'à 7 mg que cela a enfin commencé à se dissiper. Je suis encore vague et j'ai des problèmes de mémoire, mais ils sont tellement améliorés que je ne m'en plains pas !
Les autres ont dit ce que vous devez savoir sur la réduction 