Anxiety, breathlessness & palpitations.

[38jf]

I've been on pred for 7 weeks so far for PMR. I started reducing last week to 12.5 from 15mg. For the last four weeks I've put on over half a stone and I'm suffering from breathlessness, palpitations and anxiety. Does everyone get these symtoms and do they go after you've lowered the dose to under say 5 mg.? Better than the debilitating pain and fatigue from PMR. But none the less worrying.

[PMRpro Ambassador]

Not everyone no, but a lot of people do so you aren't alone. It may improve far earlier than 5mg - but that is quite a while in the future anyway. You can help the weight gain by being really careful with eating carbs - as few as possible!

Yes - pred can have its downsides but the choice is taking it and having side-effects or not taking it and having PMR symptoms. Things do improve though - truly.

[38jf in reply to PMRpro]

Thank you.

[polkadotcom]

I've been up and down on the doses more than a few times and for me the side effects begin to disappear once I reach about 10mg. But don't start forcing reductions until you are really settled in as that can lead to disaster. The most common reason for flare-ups is a too quick reduction; a slower pace and waiting until you are really comfortable gets you there just as quickly and you don't get the yo-yo effect of dosing (going down too quickly, flaring up and then having to raise the dose again) which can make the first few months a nightmare.

I do hope your journey is an easy one - but this is the place to come to if you hit any snags or potholes in the road!

[38jf in reply to polkadotcom]

Thank you

[mimopip1]

Wow you are lucky down to 12.5 in 7 weeks it has taken me 33mths to get from 35mg to 20mg and it is not easy pain wise but at least I can move freely not pain free. I did find first 2-6 months was playing havock with my weight sleep moods etc but I think now my body has learnt to live with it. Weight will climb on if you are not careful so as I tell everyone lettuce and Pred for me you just have to be careful as to what you eat as you always feel hungry and eat the wrong things. Hope you better soon.

[theresa49]

Hi, I agree with the others totally. I started on Pred last July for GCA (40mg) & I am now down to 15mg. I also have had breathlessness, palpitations along with the shakes & the dreaded moon face. I find after a reduction the symptoms seem to get worse for a few days/week but then settle again. As for the weight gain, yes I have put on a stone but it now seems to be static so fingers crossed. We are all so different but having this wonderful place to discuss our fears & get such good advice is such a bonus. You will get better. God Bless you.

[38jf]

Thanks all, it seems like I am ucky starting on 15mg, I'm being treated by my gp and the guidelines he's been given. I am due to drop another 2.5 in three weeks. He wants me to be on 10 for six weeks, then after my blood test he says we can try dropping by 1 a time and see how I am. I did feel great by week 4 I started spring cleaning but by doing too much my sciatica flared up but that's settling down again now thank goodness. Looking back I'm sure the PMR started slowly back in the summer, I just didn't feel well and stopped my usual exercise routine which was a mixture of cycling, running and swimming for about 45 mins five times a week. I was diagnosed with spinal stenosis in November but the doctors never picked up on the dreaded stiffness early morning and throughout the day really. On December 23rd I was having a review of the drugs they'd given me for spinal stenosis when I just burst into tears and explained to the GP how ill I felt, he told my husband that I was to go home and not do anything until I had a diagnosis. I had blood tests the same day, on the Friday I was recalled and the GP said he suspected PMR but I needed another set of blood and urine samples to rule out other things. They came back clear so then started on the pred. My husband of 37 years at 57 made the Christmas dinner for the first time. I now, apart from my silly spring cleaning slip up, just pace myself. As my doctor said you have to be kind to yourself.

[Jane1175]

Hi. I'm on pred for gca, started off on 60mg in October now on 35mg. I've gone from size 8 to size 16-18 in clothes, I'm very breathless , they say my chest is clear so I think it's putting on weight so fast my body hasn't adjusted.I get very anxious and I have a load of other side effects but when I was on press for pmr last year I started on 20mg and got down to 4mg and I was ok on 4mg. Hope you are soon better and keep coming down on your steroids.

[Skinnyjonny]

Hi 38jf - I was on 25mg Pred last May and although I'd already lost over 2 stone it took me ages to get back to my fighting weight. However, I was so lethargic and weary that I just worked with the condition and gradually improved. 3 things make you stronger and help you recover - remain positive all the time, have an inner core strength and ensure you have strong (and mad) support from all your friends and family. No-one took pity on me and we worked though it all. Hydrotherapy and physiotherapy has also helped as I've started to get better. I've had PMR for 14 months (January 2013) and I'm now down to 4.5mg Pred, swimming 100 lengths, running 5km Parkruns on Saturday mornings and get some normality back into my life. "Invenium Viam aut Facium" - we'll find a way or make a way. Stay strong and work with it. Good luck x