kiwimum03

Rheumy Update, Going To Trial Prednisone

21 posts in this topic

Hi Irene,

 

I have just posted a reply on another message which may help you also. You will find it at:

http://www.sclero.org/forums/index.php?sho...opid=2418

 

I would be surprised if the size of the BP cuff made any difference to the reading, but maybe someone else has found this. Your reading does sound OK, though I do know my renal specialist prefers the diastolic figure (bottom one) to be under 90. However, I wouldn't worry about it.

 

If your ankles come up again do go back to the doctor, and if possible make an appointment to see her when you think they'll be obviously swollen.

 

I do remember that "sunburned" feeling well!

 

The pale lips can be as a result of several things, one of them being anemia. Have you been tested for this as it is common in chronic illness? Tiredness can also be a symptom of this. Don't go taking iron though unless it is prescribed for you.

 

There is a page on the ISN website about anemia: http://www.sclero.org/scleroderma/symptoms/ass...mia/a-to-z.html

 

And another one about my experiences with it: http://www.sclero.org/scleroderma/support/stories/engl...ill/anemia.html

 

And here's a page about telangiectasia:

http://www.sclero.org/scleroderma/symptoms/ski...ngiectasia.html

 

I do think it might be advisable to also check with the rheumatologist's secretary about going off the prednisone. Ask her if she would check with the rheumatologist about it.

 

Good luck!

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Sherrill and Irene, The size of the blood pressure cuff does make a difference. My readings are entirely different depending on the cuff. My arms are not small so the regular size cuff reading is not correct. They always have to use the larger cuff to get an accurate reading. At least this is my experience.

 

Sherion

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Hi Sherion,

 

That's interesting! I have quite small arms, and the larger cuffs sometimes seem too big. My own BP machine has a size which fits me well, though other larger people have tried it, and found it nearly too tight. Hmmmm........ I wonder if BP readings I have had in the past with larger cuffs have been correct?

 

Do the different sized cuffs make your readings lower or higher?

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Hi Sherrill and Sherion,

 

Thanks for the links Sherrill, I will have a good look at them.

I have just had a CBC done 4 weeks ago, and my iron stores were normal so I would be surprised if that was causing the pale lips. Its so weird though, my husband and I just noticed it today, its like I woke up with it.

 

The only other time I have seen my lips pale like that is after I lost a lot of blood after my first c-section, but I will keep an eye on it.

 

I must admitt I am a bit timid about calling the rheumatologist about the tapering, as of course I don't want him to think I think he doesn't know what he is doing, but I know I am going to have to, as I don't want to run into any problems.

 

Regarding the BP cuff size, it is awkward, as I am just below the measurement for the big cuff, which I think is 35cms, my doctor normally will use the regular size, to make it more accurate to my arm size.

I hope that makes sense.

 

If I use the big cuff my bp is usually about 130/85 (which of course is great) and on the regular cuff it sits at about 135-145/90-95 and this has been normal for me for about the last year. and we have been trying to get it down, and she just added in a diurectic about 3 months ago, and hasn't done much better yet.

 

I think I have just confused everyone, but I hope that made sense.

 

Sherrill, is that 'sunburned' feeling a scleroderma symptom??

 

Sherion, thank you for writing with your BP experience, its quite amazing how much difference there can be depending on the cuff size.

I had pre-eclampsia with all 3 of my boys and of course my BP skyrocketd each time (in theatre with my last child it got to something crazy like 220/175), and of course every nurse used a different sized cuff everytime they came and saw me afterwards.

In the end I just said use the regular size, even if you think I am large at least if we stick to one size we can get some consistancy!!!

 

Well I will go and read the links now, thanks again for the info!!

 

Hugs,

Irene

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Sherrill, If they use a regular size cuff on me the reading is usually A LOT lower. If they use the larger cuff (because of my fat arms) I get a higher reading. One time the smaller cuff read 110/60 but the larger cuff said 160/85. The smaller cuffs even pop off sometimes. I also have a wrist cuff at home that registers the same as the larger cuff at the doctors office.

 

Sherion

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Hi Sherion,

 

That's interesting!

 

I have been told by various medical professionals not to use wrist cuffs as they don't register correctly. I have a home BP monitor with an arm cuff, and for a while I had been finding it read higher than when I had my BP taken by nurses or doctors with a sphygmomanometer and stethoscope, which is the gold standard for measuring BP.

 

Anyway, I sent my machine away to the company to be checked, but they didn't find anything wrong with it. I told the doctor, and he said in his experience with automatic home monitors he had found that they tend to read higher when the BP is high, and lower when the BP is low! So where do you go from there!!

 

When my dialysis nurse came to visit we checked my BP with her method and mine, and my machine DID register higher. She said as long as I can have a general idea of what it's doing, and can see if it is having any big changes that's OK.

 

Oh well, I guess nothing's perfect. However, I must say your difference in the readings between the small and large cuffs is rather excessive!

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