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ACE inhibitors to stop protein leaking into urine

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Redkite

Redkite

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
We have finally started with the enalapril tablets (waited till school holidays to avoid low BP issues happening during transition week at new school!). He swallowed the first one at 10pm before bed (first time he's ever actually swallowed a tablet and it took quite a few goes to get it down 😱). His BP beforehand was 90/62. (Normal systolic for a 12yo is 102-122 I'm told, and they don't worry about the diastolic). Everyone else I know who takes ACE inhibitors has high BP that they want to reduce. But we don't want that!!!

I've been reading through the extremely long patient leaflet, and it seems that low BP symptoms of dizziness and fainting are common for the first few weeks of taking these, until a tolerance builds up. In people with diabetes, low blood glucose events are apparently more common too - marvellous :(

Let's just hope the flipping things do the job they're meant to do, ie stop the protein leaking and protect his kidneys. Does anyone else have experience taking these despite being "normotensive" (normal BP)?
 
I hope that there aren't any side effects and that they do an excellent job with his kidneys x
 
Fingers crossed for you both Redkite.
 
I hope it does the job as intended. I've been on Lisinopril for years - but that's to treat high blood pressure. All the ACE inhibitors can cause a dry cough. If this happens, you might ask to try another one.
 
Lets hope he doesn't get any nasty side effects and tolerates it well 🙂
 
hi redkite - i dont have any experience with any of this but hope all goes well for both of you 🙂
 
I have been taking Ramipril for about 4-5 years because there was protein in my urine. I don't and have never had high blood pressure though. I don't have protein in my urine now my sugars are well controlled but the diabetes team are still keen for me to keep taking them. I didn't experience any side effects so hopefully your son won't either 🙂
 
Thanks for that Ivy, that gives me hope!
 
Hmm. I know it's less than 24 hours but no sign of any low blood glucose, in fact he's in double figures! BP 88/60. Has spent the morning in front of wii and computer with a friend.....
 
I hope he's not going to be on the ACE too long. One of their side effects is loss of hair.
 
Pattidevans said:
I hope he's not going to be on the ACE too long. One of their side effects is loss of hair.
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😱 I hope that doesn't happen :(

He's on them for life to prevent kidney damage and early mortality.
 
I still have my hair after 10-15 years.

(My nephew had beautiful golden locks - but a double dose of male pattern baldness genes means that most of his hair is likely to be gone before he's 20. Nothing whatever to do with ACE inhibitors! )
 
Well it isn't quite so bad for a bloke since there are plenty of naturally bald blokes and just another one wouldn't stand out - but Patti is saying this to you, purely because it has happened to her and frankly - people are just not very kind or understanding, when it's a lady.

I don't know whether it's a comparatively rare or common side effect but who cares if it just happens to be you that cops for it anyway?

I know I'd be precisely as appalled about it as she is.
 
Sorry to hear that Patti. Are the ACE inhibitors known to be the cause in your case? There's a girl in my son's class at school who developed alopecia at the age of 8 and the cause was autoimmune in nature. She and her Mum did a talk to the class when it got to the point she needed to wear a wig all the time, and the other kids have been totally accepting. I did a bit of reading about it at the time and found out about the autoimmune connection and hence people with type 1 have a higher risk of this happening.
 
trophywench said:
Well it isn't quite so bad for a bloke since there are plenty of naturally bald blokes and just another one wouldn't stand out - but Patti is saying this to you, purely because it has happened to her and frankly - people are just not very kind or understanding, when it's a lady.

I don't know whether it's a comparatively rare or common side effect but who cares if it just happens to be you that cops for it anyway?

I know I'd be precisely as appalled about it as she is.
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My mum is losing her hair, the problem started not long after she started taking tabs to lower her BP. It's very noticeable now. She has been on the meds for over a year now.
 
Obviously I can only speak from personal experience. At first I thought it was due to underactive thyroid, but my thyroid meds have been titrated to achieve an optimum result and still my hair was getting thinner and thinner. I have no eyebrows, no body hair and am now losing my eyelashes in addition to a nice bald patch. So when I saw the Endo a few days ago I told him how upset I was by all this and he immediately took me off BP meds as they have this affect (I know another lady with the same problem and it would appear her BP meds are also to blame). I have been first on Ramipril and then Lisinopril for over 10 years. I understand the hair grows back when the meds are discontinued and I have been off all BP meds for a week now - so fingers crossed.

It is majorly embarrassing for a lady and I feel totally self conscious about it. I was mortified when our neighbour across the road told my husband that "a bald bloke in a pink top" had accessed the rear of our home and he was worried about his intentions. It was me - instead of going to the front door I had gone round the side to the back that time.
 
What a nightmare for you :( . Hope it grows back now you've stopped the meds - have they given you an alternative for the blood pressure? As you say, it's much worse for a lady than a man, I can't sympathise enough.
 
Redkite said:
What a nightmare for you :( . Hope it grows back now you've stopped the meds - have they given you an alternative for the blood pressure? As you say, it's much worse for a lady than a man, I can't sympathise enough.
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I'm being monitored for a month or two and possibly will be put onto a diuretic if BP is too high. Meantime I'm going to try a Respirate machine.

Sorry, I don't want to hijack your thread, but I did want to make you aware that it can be a side effect and I wouldn't want your lad to be embarrassed if he lost his hair and you were unaware of the reason.
 
That's ok, thanks for the warning. Hope it doesn't happen, he is quite a self-conscious lad as it is. But will have to face up to whatever happens, and long-term working kidneys are definitely a higher priority than hair (staying positive.....).
 
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