Warnings about taking some meds when ill

Countrygirl

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I was put on Ramipril an ace inhibitor initially for slightly high BP but due to designated side effects, dry cough and loss of great clumps of hair, the doctor changed me to an Alpha Blocker drug Doxazosin.
I always check possible side effects before starting a new RX and Im glad I did.

Doxazosin was part of the large ALLHAT study back in 2001. This study compared 4 types of BP drugs, ACE inhibitors, calcium blockers, Alpha blockers and diuretics.

The Doxazosin was withdrawn halfway through the study due to 25% more of those taking the drug going down with heart failure.Yikes!!

http://content.onlinejacc.org/article.aspx?articleid=1127509


I went back to my doctor, or rather his fresh out of University 'in training assistant,' with all the relevant ALLHAT study details and paperwork, and explained my CFS/ME caused me to have low cardiac output and the last thing I needed was a BP drug that made the heart weaker.
He responded he wasnt going to change the drug, NICE approved it and that was that and there was no such thing as CFS/ME anyway.

This is the sort of attitude that a lot of doctors seem to have, even when the evidence is in the front of them that they could be handing out drugs that are going to make things worse for PWC's.

BTW Pfizer are still selling Doxazosin(Cordura in the US) as a time release drug for BP and prostate conditions so beware. Other Alpha Blocker's are probably just as unsuitable for PWC's.
Oh geesh! I am sitting here with a new drug Doxaxazosin in my lap now wondering whether I dare try it or not after reading @liverock's post.

. I have just returned from my GP following being hospitalised earlier this month with a suspected heart attack. The verdict was that (after 30 years of ME-related severe hypotension) that the heart couldn't cope any longer with my now persistent very high BP and even higher spikes reaching 250/135. My GP seems convinced that I have also recently experienced a stroke. The latest attempt to control the BP with increasing doses of Ramipril has failed and in fact the BP seems even higher on the drug.

I was just about to take the new medication but thought as always that it was wise to check it out. I am not happy with what I have read about it and then I checked into PR to find the above post.

Sooooooooooooo..............do I try it or not? Nothing else has worked so far, but this drug doesn't sound a good choice either.

I just wondered whether anyone has experienced any success with it without exacerbating the ME problems, please. Meanwhile my BP is sky high...................severe orthostatic hypotension was very disabling, but this is worse......and scary.
 

MeSci

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Oh geesh! I am sitting here with a new drug Doxaxazosin in my lap now wondering whether I dare try it or not after reading @liverock's post.

. I have just returned from my GP following being hospitalised earlier this month with a suspected heart attack. The verdict was that (after 30 years of ME-related severe hypotension) that the heart couldn't cope any longer with my now persistent very high BP and even higher spikes reaching 250/135. My GP seems convinced that I have also recently experienced a stroke. The latest attempt to control the BP with increasing doses of Ramipril has failed and in fact the BP seems even higher on the drug.

I was just about to take the new medication but thought as always that it was wise to check it out. I am not happy with what I have read about it and then I checked into PR to find the above post.

Sooooooooooooo..............do I try it or not? Nothing else has worked so far, but this drug doesn't sound a good choice either.

I just wondered whether anyone has experienced any success with it without exacerbating the ME problems, please. Meanwhile my BP is sky high...................severe orthostatic hypotension was very disabling, but this is worse......and scary.
I don't know, but I do wonder whether there is something going around here. I too had a scary heart- and brain episode in May from which I was hospitalised and have not recovered, but I have two spots on my tongue. When I prick and squeeze them a bit, I feel better.

I too have high BP, and my drugs have stopped working. I have stopped taking the various BP drugs due to adverse effects, and am trying to get by with desmopressin, sodium bicarbonate and various other things.

I don't think that docs in this country know much, do they?

For the first 2 weeks I was suffering delusions that I was being poisoned! I have never had such things before.
 

Countrygirl

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I don't know, but I do wonder whether there is something going around here. I too had a scary heart- and brain episode in May from which I was hospitalised and have not recovered, but I have two spots on my tongue. When I prick and squeeze them a bit, I feel better.

I too have high BP, and my drugs have stopped working. I have stopped taking the various BP drugs due to adverse effects, and am trying to get by with desmopressin, sodium bicarbonate and various other things.

I don't think that docs in this country know much, do they?

For the first 2 weeks I was suffering delusions that I was being poisoned! I have never had such things before.
I am sorry to hear that you are experiencing similar problems @MeSci. It is scary stuff and, no, our doctors don't seem to know what to do. You have delusions and I have visual and auditory hallucinations following the high spikes of BP, although my GP thinks I must have had a stroke. It must be something blowing over the Tamar from me to you I think.

I checked out desmopressin. I see it is used for DI which can be a problem with ME (I am sure I have had it for years and was diagnosed with it at one stage) but I cannot work out how it could help with hypertension???

Are you having any luck lowering it yet?

I hope we can both find an answer before we go off pop.
 

barbc56

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  • I checked out desmopressin. I see it is used for DI which can be a problem with ME (I am sure I have had it for years and was diagnosed with it at one stage) but I cannot work out how it could help with hypertension??
I'm also confused how this medication helps with hypertension. Maybe I missed something?

Here's a list of side effects which include hyponatremia.
FDA regulators have said that desmopressin tablets can still be considered safe for treatment of nocturnal enuresis as long as the patient is otherwise healthy. Patients must stop taking desmopressin if they develop severe vomiting and diarrhea, fever, the flu, or severe cold. Patients should also be very cautious about taking desmopressin during hot weather conditions or following strenuous exercise, as these conditions can place stress on the body's salt and water balance.

A healthy body needs to maintain a balance of water and salt (sodium). If sodium levels become too low (hyponatremia) – either as a result of increased water take-up or reduced salt levels – a person may have seizures and, in extreme cases, may die.
https://en.m.wikipedia.org/wiki/Desmopressin#Side_effects

I know what it's like to have low sodium and mine was not as low as yours. But I was still hospitalized as 125 is the cut off to be in the hospital.

You had an awful experience and I wouldn't wish it on anyone.

Good luck.
 

MeSci

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I'm also confused how this medication helps with hypertension. Maybe I missed something?

Here's a list of side effects which include hyponatremia.


https://en.m.wikipedia.org/wiki/Desmopressin#Side_effects

I know what it's like to have low sodium and mine was not as low as yours. But I was still hospitalized as 125 is the cut off to be in the hospital.

You had an awful experience and I wouldn't wish it on anyone.

Good luck.
Sorry, I am not very compos mentis again (as usual for the last 3 months). No, I don't think desmopressin helps with blood pressure. I think my problems have changed. My bp appears to have been OK at the start of the last hospital stay.
 

MeSci

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I am sorry to hear that you are experiencing similar problems @MeSci. It is scary stuff and, no, our doctors don't seem to know what to do. You have delusions and I have visual and auditory hallucinations following the high spikes of BP, although my GP thinks I must have had a stroke. It must be something blowing over the Tamar from me to you I think.

I checked out desmopressin. I see it is used for DI which can be a problem with ME (I am sure I have had it for years and was diagnosed with it at one stage) but I cannot work out how it could help with hypertension???

Are you having any luck lowering it yet?

I hope we can both find an answer before we go off pop.
No, sorry. I am going to try again on Tuesday with a blood test re thyroid, but they only test one thing first now, then test for another if that is abnormal.
 

Countrygirl

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No, sorry. I am going to try again on Tuesday with a blood test re thyroid, but they only test one thing first now, then test for another if that is abnormal.
That is interesting! Is your GP organising this?

When I was whipped into A&E in May with heart problems, the doctor said that he suspected that the malignant hypertension may be caused by thyroid problems. He said he was writing to encourage my doctor to investigate it as the cause is probably secondary and not primary hypertension. (He also warned me not to mention ME as, he said, his colleagues would be 'less kind' to me than he would be if it were known that I had been diagnosed with the illness. He also assured me that it didn't exist. :bang-head: He even apologised to me for the way I would be treated if my shameful :ill::aghhh: secret leaked out.)

Needless to say, my doctor won't be investigating it. That is four times now that the hospital has requested that the problem is investigated and it has been ignored.

I do wish you all the best with the test @MeSci and hope something is found to keep your BP within safe bounds.
 

MeSci

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That is interesting! Is your GP organising this?

When I was whipped into A&E in May with heart problems, the doctor said that he suspected that the malignant hypertension may be caused by thyroid problems. He said he was writing to encourage my doctor to investigate it as the cause is probably secondary and not primary hypertension. (He also warned me not to mention ME as, he said, his colleagues would be 'less kind' to me than he would be if it were known that I had been diagnosed with the illness. He also assured me that it didn't exist. :bang-head: He even apologised to me for the way I would be treated if my shameful :ill::aghhh: secret leaked out.)

Needless to say, my doctor won't be investigating it. That is four times now that the hospital has requested that the problem is investigated and it has been ignored.

I do wish you all the best with the test @MeSci and hope something is found to keep your BP within safe bounds.
It should be standard to check for hypertension for your GP. I am told that now that they have cut back (groan) - they start by checking TSH (which they have already done but it was not low enough, although pretty low) and then if that is low, check 'free thyroids'. It's a very rocky road, I'm afraid, with lots of errors reported here.

Yes - my GP is arranging it.

If not, you could always try a private firm, e.g. this one, obtained from here.

I've considered it myself, but don't know how I would get the blood tested - haven't looked into it. You have to find a place or person to get it done. Maybe you know someone?
 

Countrygirl

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It should be standard to check for hypertension for your GP.

If not, you could always try a private firm, e.g. this one, obtained from here.

I've considered it myself, but don't know how I would get the blood tested - haven't looked into it. You have to find a place or person to get it done. Maybe you know someone?
Sorry! I didn't make myself clear. I meant that the GP doesn't explore the causes, not that she isn't interested in the hypertension itself. She advises me to make charts for my BP and hand them into her occasionally. They seem to impress her, unfortunately, as they are so high.

I did make an appointment with a doctor a while ago to make a thorough investigation of the thyroid, but just before my appointment, I received a message to say he had dropped dead. It rather took the wind out of my sails and I haven't pursued it again.
 

MeSci

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Sorry, I am not very compos mentis again (as usual for the last 3 months). No, I don't think desmopressin helps with blood pressure. I think my problems have changed. My bp appears to have been OK at the start of the last hospital stay.
I got that wrong too! It was my blood sodium that was OK. (I hope I've got that right.)

Am really struggling.
 

Countrygirl

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Am really struggling.

Sorry to hear that, I hope things improve for you soon.


Here's a :hug: sent from my side of the Tamar to yours. Let's hope better days are ahead for both of us.

Best wishes,

C.G. from the Devon sticks.
 

liverock

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Oh geesh! I am sitting here with a new drug Doxaxazosin in my lap now wondering whether I dare try it or not after reading @liverock's post.

. I have just returned from my GP following being hospitalised earlier this month with a suspected heart attack. The verdict was that (after 30 years of ME-related severe hypotension) that the heart couldn't cope any longer with my now persistent very high BP and even higher spikes reaching 250/135. My GP seems convinced that I have also recently experienced a stroke. The latest attempt to control the BP with increasing doses of Ramipril has failed and in fact the BP seems even higher on the drug.

I was just about to take the new medication but thought as always that it was wise to check it out. I am not happy with what I have read about it and then I checked into PR to find the above post.

Sooooooooooooo..............do I try it or not? Nothing else has worked so far, but this drug doesn't sound a good choice either.

I just wondered whether anyone has experienced any success with it without exacerbating the ME problems, please. Meanwhile my BP is sky high...................severe orthostatic hypotension was very disabling, but this is worse......and scary.
If your worried about the Doxazosin take a copy of the report and tell your doctor of your concern. Doxazosin is usually taken with a combination of BP drugs and some people appear to have good results this way.
http://content.onlinejacc.org/article.aspx?articleid=1127509

Have you had a Brain Natriuretic Peptide Test(BNP) for check for heart failure?

Have you got noticeable edema and weight gain?

Reduction in sex hormones can cause increases in water retetion

http://www.medicaldaily.com/what-ca...mones-can-lead-greater-water-retention-339552

If your taking other drugs such as NSAIDS or supplements such as licorice, these can affect blood pressure and high doses of Ramipril can cause increases in kidney creatinine clearance initially. Levels of CC above 1.5mg/dl can cause high BP.

Copper problems can also cause high BP and thyroid symptoms.
Copper will rise and fall in sync with estrogen levels. Copper, as a heavy metal, has binding proteins ceruloplasmin and metallothenein to ensure any copper not used is excreted, and not wander about the body causing problems(unbound copper).
Adequate ceruloplasmin is dependent on adrenal function(cortisol levels) and lowered cortisol can mean inadequate ceruloplasmin and a build up of unbound copper in tissues, which can cause thyroid and water retention, among other problems as well. Vegetarian diets tend to higher copper/zinc ratios.

https://www.drlam.com/blog/copper-overload-and-adrenal-fatigue-syndrome-part-1/5999/

https://www.drlam.com/blog/copper-overload-and-adrenal-fatigue-syndrome-part-2/6001/

You can ask your doctor for estrogen,ceruloplasmin,copper and zinc tests and get a Genova saliva adrenal stress profile through Pure Health Clinic if you want to go down this route.

http://www.purehealthclinic.co.uk/tests/
 
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Countrygirl

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If your worried about the Doxazosin take a copy of the report and tell your doctor of your concern. Doxazosin is usually taken with a combination of BP drugs and some people appear to have good results this way.
http://content.onlinejacc.org/article.aspx?articleid=1127509

Have you had a Brain Natriuretic Peptide Test(BNP) for check for heart failure?

Have you got noticeable edema and weight gain?

Reduction in sex hormones can cause increases in water retetion

http://www.medicaldaily.com/what-ca...mones-can-lead-greater-water-retention-339552

If your taking other drugs such as NSAIDS or supplements such as licorice, these can affect blood pressure and high doses of Ramipril can cause increases in kidney creatinine clearance initially. Levels of CC above 1.5mg/dl can cause high BP.

Copper problems can also cause high BP and thyroid symptoms.
Copper will rise and fall in sync with estrogen levels. Copper, as a heavy metal, has binding proteins ceruloplasmin and metallothenein to ensure any copper not used is excreted, and not wander about the body causing problems(unbound copper).
Adequate ceruloplasmin is dependent on adrenal function(cortisol levels) and lowered cortisol can mean inadequate ceruloplasmin and a build up of unbound copper in tissues, which can cause thyroid and water retention, among other problems as well. Vegetarian diets tend to higher copper/zinc ratios.

https://www.drlam.com/blog/copper-overload-and-adrenal-fatigue-syndrome-part-1/5999/

https://www.drlam.com/blog/copper-overload-and-adrenal-fatigue-syndrome-part-2/6001/

You can ask your doctor for estrogen,ceruloplasmin,copper and zinc tests and get a Genova saliva adrenal stress profile through Pure Health Clinic if you want to go down this route.

http://www.purehealthclinic.co.uk/tests/
Wow! Thank you for taking the trouble to pass on all this info @liverock. I need to digest it all. Certainly a yes to the weight gain.........in spades and for no reason. I need to work through the rest of your post.............

Thank you
 

Countrygirl

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Mermaid has kindly sent me this article

http://www.dailymail.co.uk/health/a...od-pressure-pills-working-Blame-hormones.html

It might be the Mail, but it is a helpful article. I have heard of Conn's syndrome before, but didn't know that it is actually comparatively common and anyone with treatment-resistant hypertension should be tested for it.

We owe it to patients to make sure their unexplained hypertension is investigated,' says Morris Brown,
professor of clinical pharmacology at Cambridge University, who is a consultant at the city's Addenbrooke's Hospital.
But recent findings suggest our hormones may be to blame - specifically one called aldosterone. This controls salt levels in the blood, and too much of the hormone can lead to high salt levels and high blood pressure.

Now scientists have realised some people who do not respond to blood pressure pills have small non-cancerous growths on their adrenal glands, which produce aldosterone.

These glands sit on top of the kidneys and are also crucial for producing adrenaline and various other hormones. When the glands develop these growths, they start to overproduce aldosterone. This causes high salt levels in the blood and sends blood pressure soaring.

This condition is called Conn's syndrome, and may affect up to one in four people with treatment-resistant high blood pressure, says Professor Brown.

He explains that too much aldosterone also causes levels of the mineral potassium to drop, and sufficient amounts of this mineral are essential for keeping blood pressure low.

'Instead of getting rid of salt, the body hangs on to it in exchange for potassium - the very mineral needed to balance and normalise blood pressure - which is pushed out of the body, so exacerbating the problem.'

It can also cause tiredness and lethargy because of the low potassium levels, as this mineral is needed to keep muscles functioning properly. But the condition is under-recognised by doctors, leaving patients trying one drug after another without benefit.
 

liverock

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Hyperaldosterone can be due to trouble with the actual adrenals called Primary hyperaldosterone(benign tumour or hyperplasia) as described. It can also be due to Secondary hyperaldosterone due to renal hypofusion due to low renal artery blood flow(blocked renal artery) or congestive heart failure(low cardiac output).

I think you need some more tests at the GP.:thumbsup:

http://labtestsonline.org.uk/understanding/analytes/aldosterone/tab/test

http://labtestsonline.org.uk/understanding/analytes/bnp/tab/test/
 
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Countrygirl

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[QUOTE="liverock,

I think you need some more tests at the GP.:thumbsup:
/[/QUOTE]

Thank you @liverock . After a scary afternoon with angina, arrhythmia and extremely high BP, I am apt to agree.
 
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I'd be very interested to know how everyone on this thread is managing their high BP after a few years have now passed by. I am hoping you have all seen improvements. I have had ME for 19 years, and now have high BP. The ACE inhibitor that my GP put me on causes me total insomnia. This is listed as a known SE ... yet my GP put me on it even though I have taken sleeping medication for terrible insomnia for 15 years! I see that ACE inhibitors, beta blockers and alpha blockers are all drugs that potentially cause insomnia. I am allergic to sulphonamide drugs which means I cannot take the 'diuretic' family of BP meds. So I am wondering what options I have ... not a lot? I'd appreciate hearing from any of you who found a way forward through this dilemma. My brand-new GP refers to me as "healthy" although I am too sick to work and receive govt. disability! Thanks for any info any of you can give!