Curious about Treatment

[HopeinTN]

I've been on Cytoxan/Prednisone/Bactrim since Oct. 2011. It looks like I'll be on it at least until July. Has anyone else noticed (with prolonged use of these meds) diminished energy levels? I'm guessing it's becasue as the pred dose goes down, the cytoxan is zapping more of my energy?

After working in the office all day, all I can think about is going home and doing absolutely nothing in my pj's. It's starting to take a toll on me mentally.

Thanks all!

[pberggren1]

Ctx and pred are immunosuppressants so they wipe out part or most of your immune system which is also part of your energy system. And Bactrim wipes out the good bacteria in your gut which is also part of your immune system. And ctx is cytotoxic and does major damage over time that is ireversable.

[Al]

A depressed immune system goes hand-in-hand with fatigue, Katrina, as does an immune system under attack. It is the body's way of saying "slow down" while this crap is going on. This does not make it easier to deal with, of course, and too much fatigue over a long period of time is not good for anyone's emotional well-being. Please tell your doctor about this.

Al

[HopeinTN]

Thanks guys. I'll make sure to run it by the docs. As I read on another thread, I'm sure they same something to the effect of "this is all to be expected...". It just stinks. I know that I work too much at close to 50 hours each week. The daily 45 minute commute each way, is exhausting in itself.

[Al]

Thanks guys. I'll make sure to run it by the docs. As I read on another thread, I'm sure they same something to the effect of "this is all to be expected...". It just stinks. I know that I work too much at close to 50 hours each week. The daily 45 minute commute each way, is exhausting in itself.Katrina--I'm sure you know how your body works by now. Please do not push yourself into another flare.

Al

[Dryhill]

Katrina, ditto whta Al said. Also look at the thread entitled Fatigue.

Jim

[HopeinTN]

If you haven't yet achieved remission, can you have a flare? I know I need to slow down, but it's so hard with work. I'm on my own and if I don't work, it would be bad. I wish I was a better patient and could slow down. I promise to try harder.

[pberggren1]

I so feel for you Hope. You are in a very tough position for sure. I can't imagine how you must feel. Please keep us in touch.

[HopeinTN]

Thanks Phil. It will all work out, it always does. I just need to remember my health is more important than my job. It sounds so easy when I put it like that. But so dang hard.

[pberggren1]

Of course it is hard. You have your job and well being on the line and probably your house.

[drz]

If you haven't yet achieved remission, can you have a flare? I know I need to slow down, but it's so hard with work. I'm on my own and if I don't work, it would be bad. I wish I was a better patient and could slow down. I promise to try harder.

I know before I was told I had reached a drug induced remission the Wegs stuff would cycle up and down, hence the term the roller coaster ride as symptoms ebb and flow like the tide or the winds I guess. I suppose they would view the real bad times as a flare once you had reach a state called remission. I know my first period called remission only last a few weeks before the Wegs flared up. For me the GPA has behaved better since I have had no flares since they changed the name. Should have done it sooner:wink1:

[NicShaf]

drz, that is funny. something about GPA is just better, huh? :)

Hope, I was on CTX for about a year. Yes, as I was on it longer, and reduced Pred, I felt more and more tired and worn down. I believe that Pred also gives you a little boost of energy, espeically while on high doses.
When they first put me on 60mg of Pred they told me to take it easy even if I felt like I could do chores, or lift heavy things around the house...it was the Pred, not my body making me feel that way.

Hope you start feeling better soon.

[Sangye]

If you haven't yet achieved remission, can you have a flare? I know I need to slow down, but it's so hard with work. I'm on my own and if I don't work, it would be bad. I wish I was a better patient and could slow down. I promise to try harder.
Yes, the Wegs activity can always increase.

Basically with Wegs you must choose between slowing yourself down and having Wegs slow you down.

[HopeinTN]

In the past few days I've developed high blood pressure. I really feel it's related to the stress of having to keep up with work and everything else. My doctor wants to put me on blood pressure medicine. Really? Is this necessary? He based his decision on a 24 hour test and evidently it was elevated while I was sleeping.

I just can't bare to think of another medicine in my cabinet.

Thoughts?

[Lightwarrior]

In the past few days I've developed high blood pressure. I really feel it's related to the stress of having to keep up with work and everything else. My doctor wants to put me on blood pressure medicine. Really? Is this necessary? He based his decision on a 24 hour test and evidently it was elevated while I was sleeping.

I just can't bare to think of another medicine in my cabinet.

Thoughts?

High blood pressure is considered the "silent killer". The reason is that you don't feel the damage that the increased blood pressure is doing to your eyes, your heart and your kidneys. I think you need to take the extra medication. Having high blood pressure is not like having a headache, so you only take something when your head hurts. You can't feel the damage it it doing until it is too late. You are to valuable to let something treatable like high blood pressure shorten your life. Please consider the medication.

[pberggren1]

Usually in medicine the norm is to closely monitor the bp for at least 2 weeks and then base a decision on that data and of course what meds you are on, etc.

[mishb]

Usually in medicine the norm is to closely monitor the bp for at least 2 weeks and then base a decision on that data and of course what meds you are on, etc.

Unless it is dangerously high and then they will put you on something straight away.

If it's high but not dangerously, they will normally give you a week or two to try and get it down yourself by diet, meditation, exercise....whatever it takes.
Then you normally wear a 24 hour monitor, or if you have your own bp machine, you are required to take it at different intervals during the day...... and then they decide on what course of action to take.
.....that's how it is over here anyway.

If I were you Katrina, I would take the extra tablet because your other meds can also make the bp rise......and most (I think) bp medication helps with kidneys as well

[HopeinTN]

Yes, I worn the BP monitor for the 24 hours. It went off every 20 minutes and was so tight that I lost feeling in the arm until it released. It was every 30-40 minutes during the night while sleeping (ha, no sleep was involved). That was enough to raise my blood pressure. It was not pleasant. I want to see my readings before I will start the meds, and I also want my Rheumy to see them. It just stinks. I know it's elevated fot many reasons but mostly my work load. It has increased dramatically over the last three weeks. Thanks to all!

[Al]

Katrina, BP is nothing to mess around with. In your case, it sounds like there is a very strong stress component. However, when there is a possibility of kidney involvement, it is critical to deal with it. Sometimes, a program of controlled deep breathing helps a lot, with both the stress and the BP. However, if the kidneys are challenged, meds are probably called for.

Al

[Dryhill]

Katrina, I agree with the others that you should not ignore high blood pressure.

Whilst I think you should take the extra medicine you could try eating beetroot or drinking beetroot juice as this often lowers BP. In the UK heavy goods vehicle {HGV} drivers have to have a medical every year and if they are concerned about failing due to high BP they drink some beetroot juice.

Jim

[HopeinTN]

It's called lisinopril and I guess I'll give it a try. My Rheumy said I should do what my GP says. I just can't help to feel that this is situational. Aside from the stress from work, I can't imagine that me worry about my health helps the situation. Throw in weight gain, prednisone and pain, and it's a perfect storm.

Thanks for the feedback. I hope it's a low dose and short term.

[Dirty Don]

Do be careful with the lisinopril...docs had me on it as a 'counter' to the albuterol I was taking for the lungs. Caused my BP to drop too low too fast & I blacked out. I do think the docs made a mistake at the time, but no one caught till my face encountered the floor! LOL...but do check the interactions of your drugs.

[Al]

It's called lisinopril and I guess I'll give it a try. My Rheumy said I should do what my GP says. I just can't help to feel that this is situational. Aside from the stress from work, I can't imagine that me worry about my health helps the situation. Throw in weight gain, prednisone and pain, and it's a perfect storm.

Thanks for the feedback. I hope it's a low dose and short term.Lisinopril, Katrina, is of a class of meds that causes, in some people, a lot of coughing. Be sure to tell your doctor if you are one of these people. In that case, there are other routes to BP management.

Al

[HopeinTN]

Yes, I'm not sure coughing would be good for one with gimpy lungs. And I sure don't need to hit my face on the floor. Thanks for the heads up. Ha.

[HopeinTN]

Al- you mentioned a cough. Is it a here and there kind of cough or a constant one? I have noticed a cough but nothing that is annoying.

[Al]

Al- you mentioned a cough. Is it a here and there kind of cough or a constant one? I have noticed a cough but nothing that is annoying.I've been through a number of different coughs, HK. So, for me, the most annoying thing is the longevity. When I was on lisoprinil, it was a relatively low-level. constant non-productive cough. Later, the cough turned heavier-duty, more or less tracking the vasculitis activity. The worst was at the height of the inflammation, and went away dramatically upon the first plasma exchange session. It came back some after the course of CTX was completed, then mostly went away during the second round of CTX, but has slowly come back some--not nearly as bad as during the bad stuff, and, this time, mostly productive, and seemingly associated only with congestion, not bronchial issues--but annoying nevertheless.

Al

[HopeinTN]

It's currently a low-level non-productive cough, that comes and goes. Hmmm. I'll keep an eye on it. Thanks Al!