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I've got the drugs.....now what?


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#1 YFChoice

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Posted 06 August 2008 - 03:05 AM

Well, I went back to pulmonary doctor, got my prescription for the cyclophosphamide, prednisone and some antibiotic. They're sitting on my kitchen counter, staring at me. I'm getting over a chest cold (ignited by my bronchoscopy done 2 weeks ago) and so I'm supposed to call back on Monday. If I'm better, I will then start.

Interesting. The last 3 times I did this, I had no reservations. But then I wasn't taking the drug combo I'm going to take this time. Honestly, I'm more bothered (not worried) about taking 60mg of pred every day for 3 weeks. I know what it's going to do. Not looking forward to it. My wife suggested getting another PFT done as a way to convince me that I should or should not do this. My lung function has changed....just having 2nd doubts on whether this (the cyclophosphamide-pred) is needed yet.

Just thinking aloud.


~ You have to think anyway.....you might as well think big

#2 LisaBulman

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Posted 06 August 2008 - 03:28 AM

Being face to face with the drugs can be scary especially the combo you have. Ultimately the choice is yours... take it or wait. Clearly your dr thinks taking it will hopefully stop the changes in your lungs. The prednisone is definately a worrisome med especially the 60 mg. Just think it all through, find the pros and cons and make the best decision for you.

Good luck and please let us know what you decide.

Hugs,
Lisa
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#3 Karenlee

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Posted 06 August 2008 - 04:36 AM

YFchoice.

That must be difficult to face the meds, and I dont blame you about not wanting to take the prednisone at such a high dose, but remember the doctor said 3 weeks so it's not like a long term thing and it'll help with your lungs so mabey just close your eyes and jump. It'll be something you can count down on your calendar and look forward to ending.

I hope you feel better.
Karen

#4 razz

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Posted 06 August 2008 - 04:37 AM

Yfchoice,

Your wife is a smart cookie. Having another PFT done is not a bad idea. It's possible the results will be the same but finding out for sure will erase any doubts. PFT scores can vary depending on how you're feeling that day or the time of day you're given the test. I'll give you an example, in my case, I didn't have the mouth piece positioned properly, and during the test, the air wasn't passing through sufficiently. When I went to my rheumatologist. appt. she noted the drop in my scores and was very concerned. We did a retest and the scores were better. It wouldn't hurt to do a second test. A slight cold or fatigue can affect our lung capacity.

I was on prednisone for a short while and I remember how it affected me. :blink:

I think out loud too!



Razz
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#5 susie54

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Posted 06 August 2008 - 06:41 AM

Hi,

Can't say I blame you. I get upset over 20mg of Prednisone at a time. You have to weigh the pros and cons and that is where we have to trust the doctor. Maybe a PFT would help support your decision. I am sorry you are faced with this. Susie54

#6 Sweet

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Posted 06 August 2008 - 11:33 AM

Oh I can totally relate. Don't take them until you are sure and comfortable with it. As others have said a repeat test would be a good idea.
Warm and gentle hugs,

Pamela
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#7 YFChoice

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Posted 06 August 2008 - 02:31 PM

So I called my pulm.doc and left a message voicing my concerns. I've been on pred forever....usu. in the 5-10mg range....and I've been on 70 before for months. So I'm well versed in this good/bad drug. I've also done the cyclophosphamide thing, tho only in IV form and not pill. Anyway, he called me back and we talked for 10 minutes. He decided on no action now, we'll do the PFT test again at the end of the month. Then, we would look at the results and decide what action to take. He even suggested that if need be, we can do the cyclophosphamide without the pred or maybe a lower dose. He said he had been doing research ever since he heard my message. I might add that this doctor is awesome. He has to be as my wife will be seeing him shortly for her lung problems.

So, for now.......it's back to the everyday life with scleroderma. Don't you just love it? Never a dull moment.


~ You have to think anyway.....you might as well think big

#8 Peggy

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Posted 07 August 2008 - 05:47 AM

You are so fortunate to have him get back to you so soon. You sound like you've got a really good doctor and a great relationship. I'm sure that it really relieves your mind in knowing that this decision is one that has been well thought out and not just a rush to judgment. You seem to have a really good plan in place and that should make you feel good.

Warm hugs,

Peggy

#9 Gidget

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Posted 07 August 2008 - 02:30 PM

As it sounds like you have been down this road before, my only comment is to be sure to drink plenty of water with the cyclophosphamide so that you don't have any bladder issues. You should plan to drink as close to a gallon of water a day while you are on cyclophosphamide to flush it out of your bladder. good luck. Gidget



#10 Snowbird

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Posted 07 August 2008 - 02:47 PM

YFChoice

It sounds to me like you made the decision (when you called the doctor)...it's a good idea to take things slow sometimes, especially if you have any hint of a doubt, just to be sure of your options, good for you! Sounds like the repeat test is a good start as well...and it definitely sounds like you have a great doctor, one that will consider all aspects of what you might need for your care! Good luck with the route you choose! Keep us updated on how you're doing in the meantime!
Sending good wishes your way!

#11 smurfette

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Posted 07 August 2008 - 07:28 PM

YFChoice
It sounds like the relationship between you and your doctor is a collaborative one and that is really fabulous. Your gut told you that you were uncomfortable with the meds at the level and at the time and your doctor was open to discussing the issue. It is terrific that you are wise enough to be sensitive to your gut. Too often we are not and we go against our better judgment. That is when I get into trouble. No one knows us as well as we know ourselves. As for your doctor researching and checking into things as a result of your call - that is incredible. All too often doctors. don't do that. They are too busy or set on a certain path. That guy is a gem. I can see why you work with him.

I am glad that you are giving it time and will try the test again later. You need some time to get over that cold before testing again. Then a real assessment can occur. Your tests will be more accurate once you are healed.

I get a little test every other week at the allergist and some weeks I blow a 320 and some weeks it is a 365 or more. I have no idea why there is such a vast difference. I can't tell by the way I feel what I will blow. I use Advair and I can tell you that it makes no difference. My x-ray has shown that there is more damage to my left lung over time but yet my performance at the allergist has not changed as a reflection of that - it changes as a result of what day it is! Although if I am feeling sick and coughing I blow badly.

I understand your discomfort with prednisone. I rips my intestines to shreds. It is potent stuff and as we are learning - we need to save the big guns for when we really need them, perhaps it is best to wait until you do in fact really need it and at the lowest dose possible. I hope you are recovering from that cold and are starting to feel much better and that the next PFT will rule out the need for any meds at all.
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#12 bowbec

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Posted 08 August 2008 - 03:23 AM

YFChoice,
I am also taking cyclophosphamide & prednisone. I have been on prednisone long term. (My dad died with Lupus/heart problems at age 63). I told my doctor I was worried about what the prednisone was doing to my heart. His reply was 'I'm worried about what the Scleroderma is doing to you if you don't take it'. We can't live without our organs so we need to do all we can to perserve them.
Trust your doctor or get another opinion.
Becky


Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#13 razz

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Posted 08 August 2008 - 03:31 AM

Yfchoice,

I'm so glad to hear everything worked out for you. That hesitation and talk with your doctor did a world of good for you. The open communication you have with your doctor is the way it should be, where the patient and doctor work together for what's best for the patient. The doctor I had for 7 years (he retired and teaches fellows at the university hospital) was just like that. He made the ultimate decision but listened to my concerns. I now see the fellows he trains, so in a way I still have him as my doctor.

I hope this round of cyclophosphamide isn't too bad and the time goes quickly. You sound like a real trooper.


Razz

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