Wednesday, November 11, 2009

A Bit of Good News!

I think many of the symptoms I've been having in the years since my surgery are not actually related to the acromegaly. I've kept telling my doctor and my endocrinologist about my symptoms, and they've kept testing me for different things that I may be deficient in. I even thought maybe my pituitary wasn't functioning correctly, so maybe I was experiencing early menopause. But my lab results always came back in the normal range.

It's funny how things seem to happen by chance. Our insurance was requiring us to start getting our maintenance medications by mail order. So I was going to have to switch from the Diovan 80mg to a generic alternative. When I was researching that alternative I learned of all of the side effects of this medication, which were also side effects of Diovan. Apparently I never read through my instructions on Diovan thoroughly enough. When I'm experiencing so many different symptoms, over a gradual period of time, I guess it's hard for me to think they may be related.

The problems I've been having in the last few years: headaches, muscle and joint soreness, heart palpitations, fatigue, sore throat, dizziness, memory issues, blurred vision, etc. I also think I've had some hair loss, and may have had a small case of pruritus (a sensation of wanting to scratch an itch). Many of my symptoms seem to have been on the lighter side, which made me assume they were normal. I didn't even realize they could be side effects. But I'm hoping that they are side effects of the Diovan.

I always told my doctors I didn't want to take any medication unless I had to. Still, my primary doctor started me on a daily dose of 80mg Diovan. I can understand his concern for my health. But I wonder now why he never suggested I start at a lower dose. At the time my blood pressure was around 140/90. I recently told my doctor since my blood pressure had been controlled very well in the last few years, that I wanted to try to get off the medication gradually. He told me I couldn't get off the medication. Well, I decided without his approval to start weaning myself off the medication, even though I know that's not recommended. But besides the high blood pressure, and the fact that I have Acromegaly, I'm in good health.

Before Acromegaly, my blood pressure readings were always 120/80. I started taking the Diovan every other day for a week, then half a tab every other day for a week. I monitored my blood pressure in the morning, afternoon, and evening. At the 40mg every other day I'm feeling a lot better, and my blood pressure readings have been staying about the same or decreasing. On the 80mg it was around 120/80. I've gotten down to 116/73. I'd love to stop taking the medication altogether but I doubt that will be possible. I tried to go homeopathic with the apple cider vinegar a while back and couldn't stand it :-) But if all of my symptoms were actually side effects of the Diovan, I think I'd take anything over that. My health problems have had quite a negative effect on my quality of life the last few years. I've felt more like a 60 year old woman, than a 32 year old. I'm thankful that I may have finally found an answer to so many of the problems that have been bothering me :-) I'll keep you posted on my progress!

8 comments:

John Davey said...

Jenny, have you tried candesartan? For me, it has far fewer side effects than other ACE inhibitors and ARBs I have tried. Sometimes it seems easier to control the acromegaly symptoms than the hypertension that goes with it!

John

Starbucks Addict said...

I haven't John. I'll keep it in mind if I decide to change. Thanks!

John said...

It's just that I tried losartan many years ago, and it made me feel lousy (and didn't work either), even though it was supposed to be practically side-effect free. Some years later, after trying several other drugs, the doctor suggested candesartan. Same family as losartan and Diovan.

John

Julie S. said...

Hi Jenny,

I'm on Diovan-hct 160mg/12.5mg. Actually, I am side-effect free with it. However, I too had very similar experience with a blood pressure med called Adalat. For months and months I was experiencing terrible symptoms and it also affected my job and life.
I thought they were Acro related to find out it was side effects from the Adalat. So, the only BP med that works for me is Diovan-hct. How ironic.
I just went for a Sleep Test last week. I'm anxiously awaiting the results. Maybe I have a touch of Sleep Apnea and hence the reason for my BP levels to be up? I;m told that if you have Acromegaly you probably also suffer from high BP.

Hope you had a great Christmas and all the Best in 2010.

Julie
(Canada)

Julie S. said...

Hi Jenny,

I'm on Diovan-hct 160mg/12.5mg. Actually, I am side-effect free with it. However, I too had very similar experience with a blood pressure med called Adalat. For months and months I was experiencing terrible symptoms and it also affected my job and life.
I thought they were Acro related to find out it was side effects from the Adalat. So, the only BP med that works for me is Diovan-hct. How ironic.
I just went for a Sleep Test last week. I anxiously awaiting the results. Maybe I have a touch of Sleep Apnea and hence the reason for my BP levels to be up?

Hope you had a great Christmas and all the Best in 2010.

Julie
(Canada)

polarchip said...

Hi Jenny!

Glad to see that progress is being made towards feeling better!

Reading this post and your last one (which go together actually, as you were just saying that the acromegaly overshadows everything when trying to figure out the cause of symptoms, so I'm not surprised you missed other possible causes), I identify with SO MANY things that you bring up! Especially feeling like an old lady prematurely! Sometimes it's nice to know that I'm not the only one, so thanks for sharing.

Just curious, did your doctor ever connect your spinal arthritis to acromegaly? I suspect I may have the same, but I'm afraid to get the x-ray because I'm paranoid about so many things that may have adverse health risks (radiation).

I have a lot of pain in my neck, shoulders, and arms from sitting at a desk reading a computer monitor all day- I wonder if acromegaly makes you more susceptible to RSI?

Starbucks Addict said...

Hey Ellen. I'm sorry to hear you've been in pain. I'm sure my spine arthritis is in very early stages, and I don't believe I have much pain from it. I've noticed standing in the kitchen for hours cooking leaves me with a sore lower back but I'm not sure that's related? I'm pretty sure it's a hereditary condition though. I know my Dad has serious back problems, and his Dad did as well. My doctor suggested PT and also that I take Glucosamine supplements. I haven't stuck to either. I'll probably start years down the road when it won't do any good :-) If you're taking blood pressure medication I'd suggest that may be causing you problems with side-effects. Since lowering my medication I've noticed I don't have as much pain where before it seemed like repetitive motions left me with muscle and joint aches. Good luck finding relief.

Anonymous said...

Hiya Jenny,

Your blood pressure is coming down well!

I know what you mean about not reading the leaflets that come with the medication. It's surprising what side effects that we probably wouldn't notice or rather not associate with a pill that is being taken.

It may be worth you going back to your doctor again with your results and discuss reducing the dose or even changing the medication to something you are better tolerant with.

I'm on an ACE inhibitor (Perindropril), a Calcium Channel Blocker (Amlodipine) and just started on a Thiazide Diuretic (Bendroflumethiazide). Getting good at popping those tablets now!

Trys