Getting out of breath???

[Suesie54]

Hi all, I have got PMR have had this for about 5 years, I have put on a lot of weight, and so have noticed when on holiday where my husband and I do love walking along the sea front that I get out of breath now, has any of you lovely people noticed this please ??

[JulieR2]

Hi Suesie54 I really pant when walking I think it's the added weight!

[Suesie54 in reply to JulieR2]

Yes I think you could be right I also find for the past 5 years that I get cramp terrible in my feet while driving and in my arms, do you get this?

[JulieR2 in reply to Suesie54]

No I don't get that but I was so worried about the breathlessness I did get my GP to do a spirometry test on me to check if there was a problem but all was fine! It's just such a pain the symptoms seem to accumulate!

[Suesie54 in reply to JulieR2]

Yes it's not good, I still have another 2yrs of work which is frustrating as I should of retired at 60 but they then changed the age for retirement, I'm now down to 5 mg pred I see my Rymi next Feb, my du date was cancelled which was This October, oh dear, is there ever an end to this illness?? Lol.

[Amkoffee in reply to Suesie54]

Try talking magnesium. I was getting terrible foot cramps and someone recommended magnesium and it is working wonderfully

[PMRpro Ambassador]

Weight gain with pred is common - cutting carbs drastically does help a lot, I lost 35 lbs while still on between 10 and 15mg/day and others have either lost weight or avoided weight gain in the first place.

Breathlessness can be a side effect of pred - but it is also common in PMR. The pred is just managing the inflammation, it doesn't affect the actual underlying disease process and your muscles remain intolerant of acute exercise. because an autoimmune disorder causes your immune system to attack your body tissues by mistake, not recognising them as "self".

[Suesie54 in reply to PMRpro]

Thank you for your reply, cutting carbs is no problem for me as I hardly ever have them, bread etc is non existent as I don't like bread , could you tell me if there is anybody that have messaged you having terrible cramp on the ped? Feet while driving, arms, side ??

[PMRpro Ambassador in reply to Suesie54]

Oh darn - meant to suggest you tried magnesium supplements. Pred makes you lose more magnesium through the kidneys and you can easily get a bit low. That is the first thing they suggest here in mainland Europe if you have cramp. Having the blood level checked doesn't tell you much - the muscles can be low even if the blood level is OK. Low potassium can do it - but there you should get the GP to check it first. But food with plenty of magnesium are much the same as those with plenty of potassium - loads of lists online.

You can get magnesium supplements or you can use Epsom salts in the bath or as foot baths and that seems to work too.

[Suesie54 in reply to PMRpro]

Yes I had my doctor phone me after a blood test 6months ago about 8-30 pm telling me not to panic but if I had a shop near where I live to go and buy a banana and eat it straight away and if I felt bad to phone 999 for an ambulance straight away ( did I panic ) a bit.

[PMRpro Ambassador in reply to Suesie54]

Hmmm - not sure how much good he thought a single banana would do!!!!!

[Amkoffee in reply to Suesie54]

Typically they use bananas for the potassium that they have. So I wonder if it was your potassium that was low.

[Suesie54 in reply to Amkoffee]

Yes it was my potassium it was very low don't know why

[Amkoffee in reply to Suesie54]

I think I was told it's caused by the prednisone. Because I spent four days in the hospital in May for my breathing problems and when they tested my potassium it was low and I believe they told me it was because of my prednisone. And they put me on a supplement for the four days I was there but did not give me a prescription to continue it when I got home

[Suesie54 in reply to Amkoffee]

Thank you for your reply I didn't know it was caused by the pred, but it is good to know

[AussiePolyDee in reply to Suesie54]

Hi Suesie54, I get sort of 'heavy' strange feeling upper arms and legs sometimes and as PMRpro suggested started taking Magnesium supplements. I think it must be helping, because my family says that's one less thing I grizzle about (at the moment!!) By the way, bread is my downfall. Fat as a porpoise... can't keep blaming 7 &1/2 years of prednisolone.... prob. from a lifetime of carbs! All the best xD

[Suesie54]

Do you find that if you have stress ( mum has Alzheimer's) it gets worse??

[PMRpro Ambassador in reply to Suesie54]

Yes - for many people stress may be the final trigger but PMR and stress never make good bedfellows!

[Suesie54]

Ok thank you for your quick response, I appreciate this .

[Rimmy]

Probably one of the first signs of PMR was for me breathlessness - which I thought might be about my iron being low - and it was. Since I have improved my iron -(especially ferritin) levels it has improved - but this is also an aspect of the PMR 'fatigue' I think. Of course 'extra' weight can encourage breathlessness - even if you were otherwise 'perfectly' healthy.

I found dramatically cutting carbs, sugar and even fruit helped me lose weight even on high doses of Pred. But walking (especially recreational) is good for so many reasons if you can manage it.

[Suesie54 in reply to Rimmy]

Ok thank you for your reply

[navejasjoe]

Hi Suesie54,

My wife has had PMR for almost 2 years, and has been on prednisone 16 months. She has put on lots of weight, and when she does Zumba, or treadmill, or light walking, she loses her breath really quickly. We too attribute it to the weight gain.

Joe

[Suesie54 in reply to navejasjoe]

Yes it's not good thank you for your reply

[Amkoffee]

Its side effect of prednisone.