What is the longest time anyone has been taking ... - PMRGCAuk

PMRGCAuk

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What is the longest time anyone has been taking pred.without it having a serious effect on other parts of their anatomy?

soojay profile image
8 Replies

A healthy 2014 to everyone and keep on trucking.xxSoo

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soojay
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polkadotcom profile image
polkadotcom

After taking Prednisolone for almost 13 years (January 20th) I am now steroid dependent and I am able to stick in the main to 5mg daily. I have been diagnosed with T2 diabetes which is well managed and which I would probably have got anyway. Also diagnosed with late-onset Asthma and with Fibromyalgia and the same applies to those.

I do now have issues with Peripheral Neuropathy which is probably a combination of diabetes and steroids, but would much prefer to suffer with those than lose my sight.

I return your wishes - hope you are having a lovely Christmas and have a Healthy New Year.

PMRpro profile image
PMRproAmbassador

I've "only" been on pred for four and a half years and have been on 3 different versions: I had very few problems with ordinary prednisolone, awful problems with methyl prednisolone (medrol, weight gain, a beard, muscle wasting, it simply wasn't working so I needed a higher dose) and none with Lodotra, a form of prednisone you take late at night, and have lost over 13kg since being on it! My bone density is unchanged in that time. My cholesterol is higher than they'd like but statins made me so ill I stopped them after 2 weeks and the cardio was perfectly happy about it. My blood sugar is absolutely normal.

It depends on the person and on the dose - my granddaughter is on 40mg at the moment for severe asthma, she's developed the moonface and put on weight within a couple of weeks. I had it with medrol at 20mg quite quickly but it went as quickly when I went back to a more normal lower dose of the different form of pred. And some people take pred for life and don't have massive problems - I've met people permanently on 10mg/day with no visible problems and they also said they had few medical problems.

soojay profile image
soojay in reply toPMRpro

Thank you for your replies.xx

venezia1 profile image
venezia1

Hi - I've been on Pred a year and eight months for GCA. As I was started on 80mg I soon developed the moon face, the dreadful bruising and thin skin resulting in many cuts and grazes which took a long time to heal, also, and this is ongoing, very marked swelling of my abdomen, to the point where most of my clothes don't fit me. The mmon face and skin problems subsided quite a bit as the dose was lowered, but I can't get below 15mg without GCA symproms returning, so the abdomen problem remains and is very discouraging. One of these days it will happen, I suppose, but I'm not holding my breath!

Hi Soo,

You have posted an interesting question and reading the replies so far, I think the side effects vary greatly according to the individual.

My last blood tests of April this year showed all major organs functioning well - I had been on pred for over 2 years then and was relieved to find my system coping quite well, but that was not the full story. At present, I have been on pred for nearly 3 years and the side effects that are the most obvious are - more fragile skin, especially on my arms, hands, legs and feet, but saying that, my skin took a real battering at 30mg, but has certainly recovered to some extent on the lower doses. As I am approaching my drop from 7.5mg to 7mg I expect to see an improvement - I have been here before.

I had the moon face, buffalo hump, bleary eyes, tinitus and enlarged midriff, but all these symptoms greatly reduced once below 10mg.

Now, at 7.5mg, I am nudging my adrenals, and boy do I feel it!

I am overcome by weakness when faced with too much to do all at once. Today was a prime example. Whilst surrounded by several members of my family, all talking at once, and me, trying to serve food when they all wanted different things- you ladies will know what I mean, I completely lost the plot and was steered to a chair whilst my daughters took over.

My PMR seems to have gone, but my adrenals are pretty useless and, to be honest, it scares me. I so much want to be off this drug!

I hope we all have a good new year,

Pats.

Whittlesey profile image
Whittlesey in reply to

I agree with your last two paragraphs. Have not yet tried the biological that deals with the killer t cells, but I intend to. Dealing with the source of inflammation is important I believe and may include, either a much lowered dose of medrol or ending its use. It is the inflammation we need to deal with, it seems, in the best way. Thanks on the New Year and you, too. best and wishing good health for all, Whittlesey

Narducci profile image
Narducci

Hi

Not a too idea not to take predinisolone for your PMR. Left untreated it will undoubtedly develop into GCA and then you are risking your sight and general

health. The insomnia will get better....when you reduce the dose of steroids.

Wishing you well and all the best for 2014.

soojay profile image
soojay in reply toNarducci

Thanks Pats and Narducci,....Ever onward.xx

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