I am stage 5, and had to be taken off Losartan because of hyperkalemia. My Neph gave me a new drug which I couldn't tolerate as it made my heart race. So she said maybe you dont need to be on a b/p med since that ofc visit it was only 130/xx.
I subsequently had an appointment with my cardiologist and asked him for b/p, because by then it was up to 140 or 155 range. First he gave me a calcium channel blocker that just didnt work, and then switched me to clonidine 1 mg. This really works, and I keep track of my b/p every day, and found it works best if I take it every other day. The side effects are such that I cant take it every day, no way. I have to take it at night, because it puts me to sleep. This is the first b/p med I've ever had that helps me sleep. But the reading material on it scares me. It say it builds up in elderly people and can be fatal! Guess what that's me. Stage 5, almost 77 years old, and I cant wait til next week when I can ask my Neph her opinion on taking this med on a regular basis. I studied up on the clonidine, and it works in the brain stem. That alone is scary. It also acts like sudafed, and drains your sinus and brachia's, which is great for my chronic sinusitis, as I dont have to take allergy pills anymore. I have not heard any comments on this drug from the other renal patients on this blog, and am curious of any of you have been on it?
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chicablue
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Clonidine isn’t the same class of drug as you former BP med. I’ve never taken it but when both my kids with young they both had ADD and Clonidine is prescribed often with the stimulant meds used on ADD because it is well known for its side affect of promoting sleep. While I haven’t change BP meds often it seems a tad unusual to go from something like Losartan to Clonidine as I don’t believe it is widely used as a first-line BP drug currently. I may be mistaken as this is all off the top of my head and I usually research first but lacking the time today. Further, I’m somewhat surprised that your nephrologist made the statement that “you may no longer need a BP med because it’s 130/xx. Current KIDGO guidelines recommend lower than 120/80 and with HBP being one of the 2 major causes of “age-onset” CKD I would just assume that the lower the better unless it was causing problems with consciousness. The KIDGO guidelines are a US based set of clinical guidelines to physicians with the most current recommendations of how to treat their CKD patients. They are staffed by the NKF and the ASN. The ASN is the American Society of (freaking) Nephrologists which I’m about 99% sure your nephrologist should be a member of. However, I guess that doesn’t mean they must keep up with the new recommendations. I’m often surprised when the specialists is (seemingly by the limited info you shared) borderline incompetent. I guess I shouldn’t be I just fired one…but WAY off topic and my apologies. My point, if it were me I’d be calling the office for a new BP med or your old one until your appointment. I hope that helped some. I wish you luck in your CKD journey!
Yes, I need new Drs! What you mentioned previously about passive aggressive may still apply because that group was pissed I turned down dialysis, I stayed with the newest because I hoped she wasnt brainwashed by that group's protocol. Did you make the move to Pensacola yet?
Not yet, turns out just cause kids grow into adults, they still need their parents to solve real world adult problems…who knew. Also, sister-in-law and a fall at Christmas time (her fault after all she DOES live in NYC) subsequent doctors appointments have revealed a grade 2 brain lesion, an alcoholic liver and other issues. Who would have thought 35 years of drinking 6 glasses of wine a night would be harmful to your health…lol! So my better-half will visit her in May. We have a scheduled trip to look at real estate in June, so surly by the fall!! I am appalled at your doctors and my apologies I didn’t recognize you immediately(though wouldn’t have made much difference as I always try to keep that out of my answers until I know you or anyone else is okay admitting that we have formed an internet-friendship? Web based-buddies, Forum-Friendlies…whatever I don’t want to assume you want people to know you know me…lol!) But, I guess the BP comment makes so much more sense as does the Clonidine. So instead of “You dont’t need BP meds last time it was 130/xx,” what she really meant is “Well you choose not to do dialysis and as such you are no longer worth my medical expertise.” (No offense intense from me). Why am I not surprised? Even though both the NKF and ASN have that option as a “treatment” choice on their FREAKING WEBSITES. I’m a little triggered cause I spent about 6 hours today trying to schedule 2 doctors appoints and both offices I’ve called over 15 times. Last Friday I was ASSURED I’d be taken care of that day, nothing. Why do people not follow through on what they say they will do anymore. Don’t blow smoke just tell me it’ll be NEVER. I’d rather hear that than put trust in any service workers “word” anymore… okay rant over…my bad! How is your chosen ESRD treatment plan going? I mean other than the Nephro being whatever. I hope well. As I’m sure you remember it’s my treatment plan as well.
After I had gone 5 months without b/p meds, my GFR went down an entire point, from 11.1 to 10. So after trying the other new meds, it has fallen down to 9 now. That's why I need to find a kidney friendly b/p med soon, like now! Even the one I like (Clonidine) caused dry mouth, dry eyes, even dried out my vocal cords so I could hardly speak. So tried it every other night and the side effects are settling down now.
It even says on the bottle to only take if b/p is over 160. I think the cardio guy, who by this time we were doing telephone visits, got impatient with me for not liking his first prescribed amlopidine. Besides the fact it wasnt effective, that stuff was made illegal in the Netherlands for side effects! Why would I want that stuff? Dont drs read the patient reviews and updates on stuff they prescribe? I also read that calcium channel blockers shrink your brain, and that if you stay on them for 5 years, your IQ will be lower. Well, I guess they figure it's a moot point since I dont have 5 yrs left anyway! LOL
Funny you said “Doctors and read…”. Read on drugs? Do you think they went to school for 506 years to be a pharmacist?? You should know better. I’m so glad to hear (of course other than the immediate issues) you are doing well. I’m sure though that’s the docs thoughts. Funny isn’t it they have treated CKD in “normal” cases for years as “well let’s get to stage 5 then we can treat with dialysis and decided whether live or cadaver transplant because there is no CKD treatment for stage 1-4. Then you decide the cut them out of their fun at stage 5. No wonder no BP meds. Plus I though they quit prescribing Calcium Channel Blockers 5 years ago for BP. I think it actuall says that over on on a cardiologist website the HBP used to be…may be wrong! Anyway, I’m really happy for you and you have been in my prayers!
My dad is stage 5 as well and has clonidine in his prescribed meds but to be used only if needed with BP over 160, not for ongoing/daily BP regulation. We have used the clonidine in rare events when needed with a BP spike and it works very fast… unlike the other common BP meds it does work through the brain which is a concern for us as well hence why using it occasionally only. Hope you get more answers soon from your nephro next week.
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