Latest Hospital Consultation

[Tweetiepie]

I saw the Rheumy Nurse last Tuesday have been on 10mg Pred for the last 4 months I described my various aches and pains tiredness dizziness and wobbling nearly it the ceiling when she touched my arms. My feet ankles and legs very swollen she was very concerned about them and went and got the consultant who asked lots of questions but cant say they had any solutions. I am taking a 40mg water tablet which cant take if I have hospital appointment. The best I can say is they are holding the line. My ESR went from 9 to 33 and the last two have been 31 Nurse thinks swollen legs etc are having an effect anyone else ever had this.?I was sent for blood tests ESR CRP.Kidneys,Vitamin D ,Diabetes and Thyroid as she thought my left eye was different (This is the one I lost to GCA)would be sent my usual report if anything was urgent she would phone me of anything was Urgent No phone call so far so living in hope.Staying on 10mg till October.

I have put on a lot of weight since last September am gutted as I had lost 49lbs and because I am housebound have not been able to get .there I do speak to the WW leader from time to time and she say several members have said they will pick me up and bring me back home which is lovely and very kind of them. Hope it works has anyone followed a weight reduction plan while on pred and won . Finngers crossed it works or I will be so demoralised Once again thanks for all your support and best wishes to all on this forum

[PMRpro Ambassador]

I know a couple of ladies who have been to WW or something similar and have lost weight. I have done it on my own - no such thing as slimming clubs where I live - and have lost over 15kg (33 lbs) in the last 20 months while reducing from 15 to 5mg. I have cut carbs and given up breakfast - never feel a need for breakfast, never have, but started eating it as it was always said it was essential for weight loss! All I did was gain weight! If I am out for a meal and there is something "carby" I want to eat I do - but my portions are far smaller than they used to be! If it is too much - I ask for a "doggy bag" and haven't been refused here yet. Only once - on a north sea ferry from the UK to Holland. So they have lost our custom - serves them right!

I suspect it is more likely that your current dose isn't quite enough to hold the inflammation which is causing PMR symptoms. But the pred could well be causing the fluid retention so it is a vicious circle - and fluid retention is a cause of weight gain. Good luck

[Tweetiepie in reply to PMRpro]

Thanks PMR pro for all your help. Back to WW on Thursday

[guinivere]

Hi Im on Steroids and have been for 16 months for GCA. I put on lots of weight.But have now lost 23 lbs Another 8 and ill be back to my normal weight. It can be done on Steroids. Hope this helps.

[Tweetiepie in reply to guinivere]

Thanks guinivere that just the sort of encouragement I need

[Bagshaw]

Hi

I too am on pred, and have managed to lose 35 pounds over the last six months. So far the weight loss has not had any effect on my PMR symptoms, and I feel much better 'in myself'. Good luck!

[Tweetiepie in reply to Bagshaw]

Thanks Bagshaw it all sounds very positive

[5lupins]

Hi, I have lost weight by cutting out saturated fat. Skimmed milk (hated it the first week but now like it) no fat yogurt. Low fat cheese, I also use rapeseed oil . All these things I need but now less bad fat. Also less carbs if possible as your intake of calories has to go down and white bread and sugar aren't good. I still have enough treats for good feel times which are important to get through the day.

[Tweetiepie in reply to 5lupins]

Thanks 5lupins sounds pretty much like the plan I followed before GCA glad to know it works.

[Badgergirl]

Hello Tweetiepie. You did so well to lose 49 lbs. I hope you can lose the weight you regained. Not easy, I know, when you are housebound. Being relatively immobile you would not need as many calories as you would if you were exercising. One thing I would add is a mostly salt free diet is important whilst on prednisolone as the way pred metabolises salt tends to give us fluid retention. All the best, Badgergirl

[Tweetiepie in reply to Badgergirl]

Hi Badgergirl I was so pleased that my effort paid off as I cant exercise much if at all the only addition is the pred but so delighted to learn it can be done

[Limoqueen]

I to have very swollen legs and ankles,and my legs were oh so painful,i was on 40 mg water tablets to,i have pmr ,gca,and type one diabetes.I have found the solution that suits me to the water retention and the swollen legs and ankles,and a lot of the pain that goes with it, a sidhil hospital type profiling bed,yes it cost a lot of money but WOW the difference in my legs is amazing and i no longer take the water tablets.My hubby says the bed is worth every penny,i say it's worth every pound..If anyone decides to buy one make sure you get one that raises your legs AND FEET.

[Tweetiepie in reply to Limoqueen]

Thanks Limoqueen that does seem to be the perfect solution bit as you say very expensive might see of I can get some foam wedges and give them a try. But if that fails will save for a bed

[Limoqueen in reply to Tweetiepie]

Since buying my profiling bed i have seen them for sale on ebay,kinda wish i'd thought to look there first,most go for a really reasonable price on there,the mattresses have water proof covers so are easy to wash and sanitize.And with having the bed unlike foam wedges if you get a bit stiff in the night then you can vary the leg height at the push of a button.Honestly the bed works wonders.

[hwigston]

Hi Tweetiepie. I have had all the side effects which you mentioned above, and lost the sight of my right eye to GCA. I gained over 1 stone until I reached 10 mg and started reducing following PMRpro's reduction programme. I am now on 6 mg and back to my original weight of 8st 10 lbs, and all the other symptoms have considerably reduced. So hang on in there and stay positive. Good luck.

[Tweetiepie]

Hi hwigston I will do I am still in 10mg don't go back to hospital till mid October so will have been on 10mg for 8 months .Thanks for your encouragement