Hi everyone. This is my first post. I was diagnosed last August after feeling stiff since June, but I had put it down to my age, although I'm only 55 and was relatively fit for my age (eg able to walk 10 miles/ cycle 30). But i finally contacted the GP when I could hardly walk up and down stairs, let alone put my socks on! Also was waking constantly in the night as I couldn't turn over without manually moving my legs.
Throughout, i have been dealt with by an Advanced Care Practitioner at my GP practice, by phone appointments only
Ive been reducing by 1mg pred per month as usual and am down to 6mg but my symptoms are not fully controlled. I put myself back up to 7mg for 2-3 weeks but this didn't really help so went back to 6mg despite still having aches, difficulty bending over, aches in my legs when going for a relatively short walk, or especially when walking up a small hill. Not to mention my hair becoming thin and frizzy and the weight gain!
Any advice is very welcome please. I'm speaking to the ACP for my next follow up, early next week.
Thanking you, "Yorkshirewoman"
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Yorkshirewoman
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Sorry I think I missed out a bit as writing on my phone. I mean obviously that I didn't want to increase the steroids again because of my hair and weight.
I do appreciate you don't want to increase the pred again - BUT you need enough pred to manage your symptoms. You aren't reducing relentlessly to zero - you are tapering or titrating the dose to find the lowest effective dose for you for the medium term and I would say you have overshot. That means a bit of the inflammation each day isn't got rid of and it will mount up over time so if you leave it you could well end up back where you started.
At what dose were you last well? It is possible 7mg would be enough - but first you would have to clear out the built up inflammation and the best way to do that is to take an extra 5mg for up to a week and then drop down to the dose where you were well.
You can help the weight gain by cutting carbs a lot - it really does work. Hair isn't quite as easy although biotin seems to help some people - there are quite a few posts about it on the forum. I have developed wave - but when my hair is short it tends to be frizzy but smooths as it gets longer. I gave up over the lockdowns here and let it grow out again - so I now have waves in the smoother top hair - the nape hair is frizzy, especially after I've had a sweat!
hello , Michelle here , You mentioned that you sometimes have a Sweat and your Hair goes Frizzy , Mine goes quite Wet ! Any advice or explanation on Sweating issue with PMR and Prednisolone ? 18 months with the Problem , even in Cool Weather - It’s really getting me down 🙏
You would be better starting a new thread with your question. I and DL are the only ones who are likely to see it here on an old thread and we aren't really typical when it comes to hair!
For many people the sweating is a side effect of pred, for others it is a sign they are on the verge of a flare due to too little pred. Everyone is different.
A couple of posts for you look at - first is general info - second is advice on dealing with flare.
You may have been given a plan to taper every month, but that doesn’t work for everyone, in fact it doesn’t work for a lot of people.
You are not reducing come what may to zero, you are trying to get to the lowest dose that controls your symptoms . Too fast and you overshoot that dose - which has happened.
7mg can be a difficult dose at the best of times, adrenals need to start re-awakening.
Would suggest you increase to maybe 10mg for 5-7 days and see if that helps, if it does drop back to 8mg for a month before you start reducing again - and try 0.5mg a time and/or a slow taper as linked in first post.
Thank you ever so much PMRpro and DorsetLady that's very helpful advice. That will give me something to discuss with the ACP next week, he had given me the impression that I'd automatically drop 1mg per 3-4 wks and that would be it. I'm wary of going back to 10 and working down but may have to. And good tip about biatin for hair - I was going to try collagen but biatin is much cheaper so worth a go. Thanks guys😁
Hello and welcome, it is still a common misunderstanding by medical practitioners that PMR lasts for two years and that you reduce the pred to zero as quickly as you can and that’s it, life returns to normal. That’s exactly what I was told and did exactly the same as you until I reached 6mg and all the pain was back but luckily a different doctor in the practice said I had probably reduced too fast and I did just what PMRPro recommended to you, AND found this forum and read Kate Gilbert’s book and started making my own decisions about treating my PMR.
Without causing you too much dismay I am now 5 years into this experience and still at 7.5mg, but I have learnt that there’s nothing you can do to accelerate the journey through PMR and you have to learn to live with it the best way you can and that probably won’t be the way your doctor thinks it should be . But you are in good company here. Chrissie
I am presuming (perhaps incorrectly) from your user name that you live somewhere in Yorkshire. Did you know that we have a very active support group occasionally meeting in Leeds and Ilkley. During the pandemic we have been having Zoom meetings. if you are interested in joining us you would be very welcome. If you e-mail yorkshire@pmrgca.org.uk we can let you have more details.
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