I had the worst reaction to what i felt was a bad reaction to high dosage of Hydrazaline (100 mg twice daily). Symptoms; excessive sleepiness, headaches which i never had, low grade fever and chills which and these now gone, brain fog, blurry vision, difficulty walking because of swollen feet, ankles, legs due to amlodipine prescribed earlier. After the 3rd dosage of Hydrazaline, i just crashed. I slept hours and felt awful. I tried to talk to the oncall doctor but the operator said they only had that for transplant patients and i could go to the ER if i wanted. Nice to know that your nephologist has your back! What the hell kind of soecialist service is that? But. I felt so bad, my daughter did take me to ER. They ran tons of tests, found my heart, lungs, in very good shape and lab work all good, but gfr down to 20 from the 28 that i struggled to raise by very careful dieting. ER said it msy not have lowered that much because each lab uses different methods to get GFR.
I Started with this kidney doctor with no problems withBP meds. He immediately started changing the BP meds and I started careful dieting. My numbers did improve but.now i truuly believe it was my diet. And this first medication change cause severe swelling that he stopped it and ordered 200 mg of Hydrazaline daily.
they didnt keep me , but said that they found a small infection and sent me.home with an antibiotic for what they assumed stem from urine blockage from one of the meds i was prescribed. I never was told this. Of course, i was trying to set up my for team, but my primary is booked until 10,/9. Yet, his staff was so kind and took my concerns and said that he would probably get back with some help. I aslo asked for a kidney doctor referral.
It has been a nightmare. No BP meds and BP iS in normal or in 135-140 range. Two ER nurses both said that dose was very high. They usually start.at 20mg 2 x and work up to see how patient adjust. Of course, the ER doctor was reluctant to blsme it on the high dose but she did relent and finally said it was. She also said.most physicians who nake such big changes usually have patient back in a day or so to see how theyre doing and not a month. She said my new primary was very good and was silent on the kidney doctor.
Its been a nightmare and i womder whatever happened to:
FIRST, DO NO HARM.
I cant wait to get back to my diet charting and taking wirh a decent kidney doctor. Im worried causing more harm with antibiotic but i needed it. Feeling 30% better today.
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drmind
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Sorry to hear about the results you had with Hydralazine. It's one of the three medications I take to control my HBP. I'm taking a higher dose than you were but my cardiologist took me up to that amount slowly. I was calling his office every three days and each time we went through a checklist to see if I was having any common, moderate, or severe side effects. I wasn't.
Let me ask you a question. If you have blood pressure issues, why are you having a nephrologist order blood pressure meds? Here's how I look at this. If I have a broken water pipe at home, I don't call an electrician. I call a plumber.
Diabetes and high blood pressure are the two leading causes of CKD. I want the expert on my heart to deal with heart issues and not the kidney specialist.
My cardiologist is my main doctor. Without a properly functioning heart, I'm in serious trouble. If my kidneys fail, I can live on dialysis. If my heart fails, I can't live.
Unless you have a personal reason for doing this, let the specialists on your Care Team know of all your health issues and pick one to help you that is indispensable.
Let us know as you get above the 30% recovery mark.
Thank you. Its so nice to have your support. Im waiting for the primary to get back to me . Nephrologists are supposedly specialsts in hypertension. Ha?? Im learning. I never had what i considered very high BP. High runs in upper 140's. I haven't had any BPB meds in 4 days and its running on the mid 130's and distolic always on 70'S. Im thinking that that the Hydrazaline is still in my system. I was told that not only am i elderly i could very likely be a slow metabolizer where meds stay in system longer. Ive had years of problems taking new meds. A few doctors understand and many just dont believe.
Feeling better but not 100,%. Was able to eat a whole sandwich ( mustard and low sodium deli) tonight. Haven't eaten in a few days but keeping fluids up as best as possible.
We all react differently to medications. Back in 2015 before I knew I had CKD I was put on lisinopril. The doctor never said a thing about side-effects and after a week I left on a trip to visit my grandkids in Florida. I checked my BP one morning and it was 220/180. I went to a local hospital's ER and they found I had a potassium spike. Two little bottles of Kayexalate and six hours later they sent me back to my RV with a script to see a local doctor. I did and he stopped the lisinopril and started me on amlodipine. Several folks in this community have stated they take lisinopril with no issues. Each med reacts differently with our body's chemistry.
I had a bad reaction to Hydralazine too. For me it was high BP and nose bleeds. I just stopped taking it after about the third dose when it became obvious to me that it was responsible for the side effects and told the doctor who prescribed it what happened. He just pulled out his book and gave me a different script.
I've had CKD for 32 years and over that time I've run into many drugs that caused side effects that were worst than what they were prescribed for. Amlodopine is also one I had trouble with early in my CKD. Like you my legs and feet swelled up to the point that I couldn't wear shoes so I got my GP to change me to another drug. 20 Years later that all changed and Amlodopine was the only drug that could control my BP pre-dialysis so I had to put up with the side effects but by then the side effects were not as severe.
You sound like your very proactive watching your BP and diet which is really good. Keeping fit and doing regular exercise like walking is also very good for stabilizing your BP. As for the drugs they all do something different and each Doctor you come across will have their own favorites and different ideas about what your BP should be. If your prescribed a new drug and it has side effects that don't sit well with you go back to the doctor who prescribed it or your GP and tell them and get them to put it on your record so that it isn't prescribed again in the future. We all react differently to different drugs and combinations of drugs and sometimes its just a matter of what your willing to put up with.
CKD is a complex condition and not all Doctors are specialists in it. I hate going to ER because I get tired of having to tell them the whole story over and over again to each new Doctor that comes in but eventually they accept that its above their ability and they call in a kidney specialist. Its unfortunate that your regular doctor wasn't available when you needed him and as for the Nephrologist my one always only saw me by appointment and left the follow ups for my GP.
Its a long slow road to recovery but I hope your feeling better soon.
Thanks. The Amlodopine had my legs, ankles,and legs so swollen and dimpled i was so scared. Ive been off it since 9/1 and they are still.not right. Im slowly getting back but.far from 100%. Im trying to get a team together but its difficult in this part of Central Florida. But. im not giving up
Every nephrologist I've had for 40+ years has also been a BP specialist and internal specialist, giving them the keys to understanding what it takes to manage BP etc. Most nephrologists are very educated in BP management. Sometimes you get a kidney doc that is a bit lazy in their duties. I personally have only seen a cardiologist for BP issues for about a year, and that was for LOW BP. He was a crack. Kept telling me my low BP was due to "over" dialysis. Didn't understand the "target" weight, or anything else regarding ESRD, dialysis etc. So, do what you feel is right. Find another nephrologist, cardiologist, PCP etc or stay. Hang in there. Blessings
Wow. Sounds as though you’ve been to hell and only slightly back! I’m sorry about all that suffering you’ve been through. That does sound like a very high dosage of any BP med to begin on. My nephrologist discontinued Amlodipine (Norvasc) for me years ago, as my feet, ankles and calves were exploding. I mean HUGE! My pant legs (and they were quite wide to begin with) would get stuck on my calves. It was that bad! My advice to you, if your medical team hasn’t already stopped it, is to speak to your doctor(s) and ask for a different medication that is a little friendlier.
Also, it’s very possible that most of the trouble you were experiencing (fever, chills, etc.) may be attributed to the infection. I’m glad that you were able to at least get a remedy for that. I hope that you’ll be feeling much better soon. All my best to you. Please keep us posted. Many blessings. 🙏😊👍✌️
I stopped the Amlodipine on 9/1 and my feet and ankles still dont feel right. They're much less swollen but hurt when i bend them. Wow, it sounds as if you had a bad time. Glad its better now. Best
My husband was also abruptly switched to a blood pressure medication by his nephrologist and also experienced extreme swelling. I agree with those that recommend one always consult with one's cadiologist (heart specific) or general practitioner (sees one in his/her entirety) for any blood pressure medication switch. My husband's swollen feet has yet to return to normal even though it's been several months.
OMG praying it gets better soon. Im learning a lot from this experience!! My feet are not right yet. I think my nephrologist may know alot about BP Meds, but he should take a week or two off to study SIDE EFFECTS They're real. Ask us
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