Some good news, but also a problem.: Many thanks to... - PMRGCAuk

PMRGCAuk

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Some good news, but also a problem.

Mischevious profile image
7 Replies

Many thanks to all contributors for their advice and support and that advice has enabled me to be looking forward to my last 1mg of Prednisolone next Wednesday. I have used the very slow reduction method advised by PMR pro, for which I am very grateful, I had a few flares when reducing faster. My problem now is extreme fatigue and no inclination to do anything other than sit in a chair. I do make myself do something and manage to complete whatever it is. My question is, are these withdrawal symptoms, I do not have any scalp tenderness or jaw pain as I did originally with GCA. If it is just withdrawal I will grin and bear it, I would prefer not to increase the steroids although it is a temptation at times.

On a lighter note, I hope to do something similar to Skinnyjohnny's recent exploits next year. I have regularly taken part in the four days of Nijmegen, a walking event in Holland that involves walking 200 km in four days. I have had to miss the last three years but, if the current progress continues hape to go back next year and use it as a vehicle to raise funds and to increase awareness of PMR and GCA.

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Mischevious profile image
Mischevious
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daveD profile image
daveD

LO Mischevious. FATIGUE as been one of my main problem with this strange journey, also the muzzy head. I have to give myself a good kick up the backside to get me going. I am down to 6mg & 5 1/2mg. Nimegen brings back fond memorys 1960s good to see it is still going.all the best for the rest of your journy Dave

GreyOwl profile image
GreyOwl

Hi Mischievous! Great to hear you are almost off the pred. You are probably really pleased as, even though the steroids control the PMR and GCA, it's not a very nice drug, is it?

I'm two and a half years into my pred regime and finally got down to 6mg. I hope to be finally off them by early spring. They've done their worst though, last November my GP told me I had steroid-induced diabetes. On top of that my rheumy concluded last March that I also have fibromyalgia. Chronic fatigue is one of my pleasures too. It certainly is a life-changing condition.

Three years ago I was a ranger for the Mendip Hills AONB. Now I have problems "ranging" to the end of my street! Best of luck with your Nijmegen target.

suzieh profile image
suzieh

Well done ! Hope you get some energy soon. I have reduced to 2.5 mg using the slow method but am having fluctuating pains at present so am trying to stabilise on that dose before going down anymore. I am feeling quite rough in the mornings but better as the day goes on. Sleeping well but such an effort to get going.

Did you have any of this on the lower doses?

PMRpro profile image
PMRproAmbassador in reply to suzieh

Sounds like you are at your "maintenance dose" - stick there for a while, it will also let your body catch up if your adrenal system isn't up to snuff yet.

I really sympathise. After 25months of Pred I came off completely almost 12months ago. Unfortunately my husband was then ill and had to have 6 teeth out. I felt totally shattered and had no energy. However I'm pleased to say that my energy has very slowly returned and I feel so much better now.

Hope you feel better soon.

Jane1175 profile image
Jane1175

Such good news. It makes me realise that there is a light at the end of the tunnel.

Mischevious profile image
Mischevious

Thanks you everyone who has replied for your support and helpful advice. I will let you all know how my progress continues and hope that others are encouraged by positive news.

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