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Cyclophosphamide On Hold, Prednisone For 6 Months Instead


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#1 beanie

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Posted 15 December 2007 - 02:33 AM

Went to see my rheumatologist. She looked at my numbers on the PFTs. They are stable for now but so low. Said we would hold off on the cyclophosphamide and do 6 months worth of Prednisone, until I have my next PFTs.

Also wants me to see a cardio for an eval. My holter monitor and echo didn't show anything, but occasional PVCs. I get lightheaded periodically and in the evenings, mostly, just feel "bad". Will see what he says.

Hope you all are ready for holiday and staying warm and safe with this nasy weather some are getting.

Also was wanting to know how many of you go to physical therapy or massages? My neck is so stiff and sore all the time. Would think a massage and stretching would feel so good. I am afraid if I don't work on it, I will lose more range of motion. Need to ask doctor about referral after we change insurances.

Thanks,
Michelle



#2 janey

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Posted 16 December 2007 - 04:57 PM

Michelle,
It's good that your pfts are stable! How much prednisone will you be on? Please talk to your doctor about monitoring you kidneys. There is a risk between corticosteroids and renal failurewith scleroderma patients.

I had a few PT sessions last february and learn some basic exercises for flexibility and strength. I do try to stretch, but should stretch more. Haven't had a full body massage since I got sick. I did have a neck message a couple of months ago and suffered for 3 days with a sore neck and headache. I did fail to mention sclero and polymyositis, so I can't blame the masseuse.

Please let us know how you're doing and how your cardio appointment goes.

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#3 peanut

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Posted 16 December 2007 - 09:11 PM

Hi Michelle,
Prednisone does its job as an anti-inflammatory but please become aware of the side effects of prednisone. I've been on it for 16 months now and I've gained 30 lbs, I crave snacks & sweets like mad (which can sometimes lead to diabetes), and I heal very slowly. It never hurts to be aware that way if/when something odd happens you might have an idea if its related to the prednisone.

hearts & health,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 beanie

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Posted 22 December 2007 - 02:06 AM

Thanks for your responses. Unfortunately, I always gain weight on the Prednisone, as a lot of people do. I will be on 20 mgs a day, which I think is a moderate dose. I have been on it for about 2 wks and I feel, pulmonary wise, good. I have more energy too, but also am more moody. With the good comes the bad, I guess. Just waiting now to get our insurance changed to see a cardio and see why I feel lightheaded and feel like my heart races. Actually, my heartrate for two days in a row was 103. Yesterday, was 91. Normal for me is in the 70's.

#5 bookworm

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Posted 22 December 2007 - 08:55 AM

Hi Michelle,
I seem to be having a lot of the same symptoms you are. I get light headed and my heart rate last night was 96. I don't actually know what mine normally is, but a so-called normal rate is something like 70 to 80 -- I think -- I've forgotten the exact numbers.
Anyway, I also was gertting some pretty painful chest pains so my doctor ordered a cardiac evaluation. This past couple of weeks, I have had an echo cardiogram and some sort of stress test and I don't have any heart blockage or problems. I do, however, have a "mild case" of pulmonary hypertension, I was sorry to learn.
And that's where we are right now. I called my rheumatologist's office yesterday to report this news to her, and they were supposed to call me back but never did. I don't know what happened because they usually are very good about returning calls. Meanwhile, I still feel lousy and I keep getting the chest pain. What helps me most right now is taking an anti-anxiety medicine I happened to have in the medicine cabinet and my doctor said to take it. That seems to imply that at least some of my problem could be stress.
Keep us posted. I hope you get to feeling better.

Mary in Texas

#6 beanie

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Posted 23 December 2007 - 03:01 PM

Mary,

You sound like me alot. My echo about 6 months ago showed only occasional PVC and my holter monitor didn't show anything remarkable either. My blood pressures have been fairly decent since last upping my meds but my heart rate continues to fluctuate. I have kept a joural to try to correlate when my symptoms are and what my readings are. Doesn't make since. There have been days I am dizzy, lightheaded and just feel lousy and my BP and heart rate is in the okay range and then other days when they are sporatic, I am asymptomatic. Go figure. There have been a few evenings when I have taken 1/2 of my husband's Xanax and it helps me too. My most symptomatic times, if I am to have one, is in the evening when the kids are wound up, supper time, homework, bathtime, bedtime, just busy and little help and having worked all day, it is almost too much sometimes. I have been told that I my #s are still high normal for no presence of pulmonary hypertension. Will see what the cardio says. I still need to figure what insurance we are going with and get it changed, and then make my cardio appt. We are being swallowed up by all these office visits that we have to pay and trying to scrape for holiday.

Best wishes to you and hope you get some answers soon too.

#7 peanut

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Posted 23 December 2007 - 09:22 PM

beanie,
my average heart rate is 107. I tracked it along with my bp for 2 months. I asked my rheumatologist and he said this rate is to be expected with all the med I'm on. I also have mild PH.

I take anti-anxiety meds and I love them. I was sooo against them for years, but I really found myself struggling with coping. I would read about scleroderma and burst into tears anytime I read anything negative or a mortality rate. I reached a point where I wasn't learning anything and driving my husband and myself crazy. Now I don't know what I'd do without them.

Don't fret too much... it will only raise your heart rate more.

Hugs & Happy Holidays,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#8 Snowbird

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Posted 24 December 2007 - 09:46 AM

Hi Beanie

I do not go to physio therapy but I do go for massages. I find they really help me but my massage therapist is careful at pulling; she knows to be gentle and not to "tug/stretch" me too hard, so I love them...but I don't have any idea if they help with range of motion? I also have FM.

Ramona
Sending good wishes your way!