Je prends de la prednisone depuis environ 3 mois, j'ai commencé à 30 et je suis maintenant à 20 après une réduction désastreuse à 10. J'ai été à 20 pendant deux semaines maintenant. Il me faut encore du temps le matin pour démarrer, l'après-midi et le soir sont meilleurs en termes de mobilité/douleur. J'ai des escaliers dans ma maison et c'est Très difficile de monter les escaliers ! Descendre n'est pas un problème. Je pense à me procurer un monte-escalier. Quand je monte les escaliers, je fais un pas et dois me reposer une minute avant d'en faire un autre. Qu'en pensez-vous tous ?
Je sais exactement ce que vous voulez dire. J'ai commencé il y a deux ans de cette façon et ce n'était pas trop mal jusqu'à cette année, lorsque je suis passé à 5 mg. Maintenant, j'ai beaucoup de symptômes originaux, principalement une sensation de vascularite où je ne peux pas faire circuler le sang dans les muscles et ils refusent de répondre. Mon avis est que tout est lié à la dose de prednisone. Je suis très impatient d'entendre ce que certains de mes autres amis ont à dire. Peut-être que nous pourrons tous vous aider à résoudre votre problème.
I don't agree with blaming the lack of muscle control and weakness on steriods. I've been on and off prednisone, 2 to 4 months out of the year, for almost 20 years, due to prior (before PMR) health issues. The only side-effects I felt were increased energy and very easily irratated. I never felt this total lack of energy and extreme exhaustion. This is just my opinion, not the opinion of this forum.
C'est plus probablement la PMR qui cause les problèmes avec vos muscles et la fatigue.
Cependant, en dessous d'environ 7 mg (pour moi, c'est 5 1/2 mg), les surrénales doivent commencer à fonctionner à nouveau et parfois vous vous sentez fatigué et léthargique jusqu'à ce qu'elles comprennent que vous attendez quelque chose d'elles !
Wilma, à mon avis, tu devrais faire tout ce que tu peux pour faciliter ta vie. Si tu veux installer un monte-escalier, fais-le !
If you are still experiencing debilitating pain and stiffness, you may need to be on a higher dose of prednisone for a while. It took 25 mg for me to get the inflammation under control.
Doctors typically start with a dose of 15 mg, so I wonder why you started at 30 mg. Then the reduction to 10 was very fast- too fast, as you found out! But a puzzling series of decisions about your dose.
I hope your doctor is open to increasing the dose for a while, until the symptoms are under control. After a while with little or no pain and stiffness, you can begin a slow reduction.
Best of luck! PMR is extremely variable in severity and duration, so I hope you have an easy course!
Wilma I also live in a house with steps. At first, it was such an effort to go up or down ( honestly I was more concern about going down because of the risk of falling). I am a bit concern that you may not be at adequate dose of pred and that your decision on installing stair lift is motivated by your condition at the moment. If I were you, I would give it more time for pred to reduce inflammation and for you to adjust to it. My office is upstairs, so I make it a habit to stretch my legs and go get a drink or snack from a kitchen (downstairs) at least once an hour, thus forcing me to climb the stairs. I do it slowly, and take time to rest. I remember it took me about 2 weeks or so of this regiment before climbing stairs was not an issue any more.
While we have to careful and listen to our bodies even more with PMR, this does not mean not moving at all. In fact, I think that slow, measured movement is necessary to get our blood flowing again and help those muscles impacted with PMR to get some fresh blood with nutrients and oxygen.
Salut, je vous entends, je prends 40 mg de Pred par jour et j'ai 16 marches à monter si je sors, et c'est dur > Je les fais une par une, puis je m'arrête. Une fois, j'ai décidé de tout donner, et j'ai vraiment souffert les jours suivants dans mes jambes et mon dos.
Je fais maintenant livrer ma nourriture à domicile sur mon plan de travail de cuisine, et je dois juste apprendre à y aller doucement. J'ai eu PMR ET GCA pendant 3 mois, je découvre encore mes limites ... J'espère que vous trouverez cela plus facile bientôt. Salutations Dea
Hi Wilma, I agree with all other replies on here, it's still early days for you so would take enough prednisolone so that you are pain free enough to get moving.The longer you are immobile the longer your recovery will be. Even if it's just standing and walking to the other end of the house or to get a glass of water do it at least every hour. The less pain you have the more mobile you will be. Now after 2years and off prednisolone I don't notice the stairs anymore and make sure I exercise everyday. Another tip if you are housebound is to get your vit d levels checked you may need a supplement and vitk2 mk-7 is another supplement worth looking at especially if you have vasculitis.
Wilma I too have problems with stairs, I am otherwise doing quite well and down to 4mg pred. But stairs are a real problem, I go up and down one at a time and feel as if my thigh muscles are the problem we are even thinking of moving to an apartment or installing a stair lift .
p.s I am now in my 6th year of pmt🤔
Il semble que vous n'êtes pas sous une dose suffisamment élevée de Prednisolone. Peut-être qu'une diminution de 10 mg était trop importante pour vous. Nous réagissons tous différemment aux stéroïdes et, bien sûr, la manière dont la PMR nous affecte varie également.
J'ai commencé avec 15 mg et n'ai pas pu supporter la première diminution prévue à 12,5 mg. J'ai essayé 13,5 mg et cela a fonctionné pour moi. J'ai continué ainsi avec des réductions ne dépassant pas 10 % et je suis maintenant, deux ans plus tard, à 5,5 mg. La devise est « Ralentir et être régulier gagne la course ».
Jeanne, l'un des effets secondaires bien documentés de la prednisone est la myopathie musculaire. Sans aucun doute, cela m'est arrivé. Je suis, ou devrais-je dire j'étais, une rameuse compétitive et en pleine formation lorsque j'ai commencé à remarquer l'amincissement et la réduction de ma musculature. Le médecin a confirmé la cause.
I think your doctor has reduced your dose far too fast and in far too big steps since it sounds as if you went 30/20/10 - though I stand to be corrected.
Using pred in PMR is not like the usual way pred is used: hit the inflammation on the head and reduce the pred to zero. You clear out all the existing inflammation with the starting dose and then reduce slowly, in small steps, to find the lowest dose that gives the same result as the starting dose did. As already mentioned, each drop should never be more than 10% of the current dose - so even at 30mg, 3 mg is ore than enough. At 20 you are down to 2mg, 1.5mg at 15 - so 1mg drops from there make perfect sense.
Try taking your pred as early in the orning as possible - many take it about 5 or 6am and then settle down for another couple of hours - by then the pred is absorbed and starting to work. That is if you are on ordinary white prednisolone tablets. Prednisone may take a bit longer. Enteric coated prednisolone will take 5 or 6 hours to reach its peak level in the blood and it will be much lower than for the white tablets.
You don't say how long you had had PMR pre-pred - it may be that your thigh muscles have lost strength over that time because as soon as I started pred I could walk up (and down) stairs normally - I'd been dragging myself up with the handrail or crawling on hands and knees until then. I had had PMR for 5 years though - no diagnosis!
Maybe a physio could help to get your thigh muscles back to beng some use? I do see the attraction of a stairlift (I live on the second floor and we have a lift to fall back on but I only use it with shopping) but there is a lot to be said for trying to get your legs going again. The exercise is the only way to get the muscles back to normal. You haven't really been on pred long enough for it to very much affect your muscles - muscle wasting can be a problem for some people with some steroids: I had it with Medrol for example but not with prednisolone or prednisone - as soon as I switched to prednisone the muscles started to build again.
Are you also on statins by any chance? They absolutely floored me within a few days - I was already on Medrol so it could have been the combination but they are notorious for that. .
I agree. My undiagnosed winter with PMR I was out shovelling snow with little difficulty (having trouble getting dressed or getting out of bed but I could still shovel snow and it was the winter from hell, go figure). Following winter, on pred for about six months by then, found I could not do nearly as much heavy lifiting, even though the flexibility issues caused by PMR had all been resolved by pred. As my dose lowered I felt I was getting a bit stronger again, but even that improvement hasn't got me back to where I used to be.
Handbrake what is Vitk2 mk-7?
Vitamin K2 not K1 is important for getting calcium into the bones where it belongs. It comes in a number of versions and there is some thought that mk7 version is the best. Usually we have to get it from supplements as it's not readily available in the modern diet. We can convert a little K1 in our own gut, but apparently we're not very efficient at doing so.
Je n'avais pas pensé à Pred être responsable de cela, mais peut-être devrais-je. J'ai une sténose spinale et j'ai aussi des marches étroites et raides là où je vis. Je monte simplement à quatre pattes, ce qui est facile. Cependant, on ne peut pas faire cela quand on est dehors :-) alors faites-le lentement et montez une marche et amenez l'autre pied sur cette marche avant de répéter le processus (désolé, ce n'est pas facile à expliquer). J'ai supposé que la sténose spinale était responsable.
C'est la chose bizarre avec la PMR - je peux faire certaines choses mais pas d'autres. Mettre des chaussettes ou un soutien-gorge est presque impossible mais je peux peindre un plafond !