Heart health journey continues - Losartan?

[Sailing63]

After 2 1/2yrs with GP adjusting just Amlodipine and Ramipril doses, I insisted on seeing a cardiologist as my faith in GP had waned totally. Today the cardiologist put my mind at a degree of rest in just 20 minutes after a long period of concern and anxiety. Having continually told GP that Amlodipine ( fast heart rate/flushing/missed heart beats) and/or Ramipril (cough) didn't suit me and after I withdrew myself from all meds due to feeling so poor, I presented the cardiologist with 3 x A4 pages of every change in meds and reaction of the last 30 months. We both picked out that doses of A over 5mg caused heart racing and missed beats. Cardiologist said that Amlodipine was "a lazy diagnosis" as it was the "go to standard" combined with Ramipril.

My "ectopics" virtually stopped 1 week after Amlodipine stopped and all my ECG/EEG and Holter results showed no heart issue of concern (apart from what I am calling Amlodipine masquerade!).

So today I start LOSARTAN as an ABR which should help and not produce a cough that Red Rum would have been proud of.

I have learned the following:

a) dont take the GP diagnosis as gospel, they're our bodies and we know when something isnt right.

b) keep good records which can be produced to support your concerns / suggestions. Be Self Informed !!

c) If unhappy, return and return again, as Health is Wealth these days and engage positively!

d) if referred to a specialist, do your homework and arrive prepared to give an accurate but brief overview / history / concerns/ reactions, help them to help you!

I have had 30 months of anxiety and numerous GP appointments, if the GP had listened and not been fixated on A & R solely, I would have required fewer appointments / less time in his surgery, less anxiety which I am sure would have reduced BP and heart rate.

I post this in the vain hope that others on the same restricted medication pathway challenge their GP (in a nice way, initially!!) to find a better health solution, and to further the message of be informed and stay engaged, challenge what concerns you.

Now if anyone can in return help me and give me good news regarding Losartan, that would really make my day!

Stay well all and try to have a stress free Xmas and a Healthy New Year

[Happyrosie]

hello sailing63 that’s an encouraging post.

I keep banging on here about medication: can your general practitioner always be right about prescriptions?

In the UK most groups of surgeries employ one or more pharmacists. They are the specialists who can guide their general practitioners.

In my experience of cancer medication, for instance, my oncologist told me that they always prescribe one particular generic medicine because they are used to it and generally it seems to have good results. There are two others which do the same job, but which have different side effects which are felt by patients in different ways.

But a pharmacist has his or finger on different sources of information and has had many years of training. If they have a good relationship with their surgery then they can guide their doctor along the right path.

So what I’m saying is, if you think you are having issues with your medication then talk to the pharmacist at the surgery - get on the right side of your receptionist to carry this through.

[Sailing63 in reply to Happyrosie]

Thanks HR. Unfortunately my GP surgery has 2 issues as far as I am concerned. 1) no pharmacy to engage with

2) it has become a Teaching Practice and has a regular turnover of junior GP's in training so there is no consistency or continuity. A point I have raised with no success. Fully aware that Jr GP's have to cut their teeth, but not sure that after 30 months of dissatisfaction I should stand the anxiety costs.

The Practice owner no longer sees patients and is only available if JrGP needs to refer. I believe that the financial benefits of this are substantial to the Practice owner.

My plan is to maintain my personal records and observations and stick with the cardiology team as my primary BP team. I will raise why them and not GP with my practice owner if I ever see him.

I hope that my part of the contract to maintain good diet and exercise with a modicum of good red wine supplemented by medication improves my position and removes the need for protracted engagement. As an ambulance driver I am hugely aware that the scant resources of the NHS are needed by others and not me with my issue caused in part by poor GP focus and effort.

Cheers all

[Icenae in reply to Sailing63]

i am surprised your GP tried to handle your condition themselves in the first place. Most and mine dont want to and refer you to cardiologists fairly rapidly for echo's and tests etc. mine refers to the cardio team about any meds now. Good luck. Have you tried magnesium supplements. They have helped me, I am sure. ( i have af, 3 ablations pm).

[Icenae in reply to Icenae]

Ps. I refuse ramipril , side effects. My bp is reasonable with 5mg of nebivolol.

I also refuse statins. Taking ezetimide alone.

[MoretonCross in reply to Icenae]

I refused statins yesterday, as it happens. Mind you, I stopped taking a statin many months ago. The surgeon has signed me off after ohs in October, and the gp had decided to change the dosages of some of the medication I was put on. All increases of course. I've refused his changes and look forward to being free of medication in as short a time as possible. Just like my friend. It is possible, contrary to popular belief!

[Happyrosie in reply to Sailing63]

Are you completely sure the practice do not employ a pharmacist? This isn’t a dispensing pharmacist from whom you get your medication.

[Happyrosie in reply to Happyrosie]

Whoops how to edit my post.? ? I intended to quote the following, from a five year plan published some years ago by NHS

Clinical pharmacists are increasingly working as part of general practice teams. They are highly qualified experts in medicines and can help people in a range of ways. This includes carrying out structured medication reviews for patients with ongoing health problems and improving patient safety, outcomes and value through a person-centred approach.

A successful pilot showed that clinical pharmacists in general practice are really benefiting patients. There are currently over 1000 Full Time Equivalent clinical pharmacists working across the country through the NHS England Clinical Pharmacists in General Practice Programme since it started in 2015.

The NHS Long Term Plan commits to increasing the number of these health professionals working in primary care over the coming years. This will make it easier for patients to get a convenient appointment with the right expert health professional for their needs.

The new GP five-year contract framework was launched in January 2019 to support Primary Care Networks (PCNs) recruit up to an additional 20,000 additional staff to work in primary care teams including clinical pharmacists, physician associates, physiotherapists, community paramedics and social prescribing link workers.

[Skiffrower]

Fully support your advice that if you think medication is a problem then you go query it. Doctors perforce are working on average reactions ; you will be working with knowledge of your own body - At my age I've got a lot and know when things aren't right. There is more variation in the human condition than medical guidelines like to allow for. And for women this tends to be worse since the majority of research over the years has been on men.

The ramipril was awful for me but the GP I had contact with listened and it immediately was stopped , hurrah

[Pheobgh1 in reply to Skiffrower]

I've just been put on ramipril and don't like it. May I ask how it was 'awful' for you? Thank you for any info.

[Skiffrower in reply to Pheobgh1]

I was put on Ramipril and bisoprolol after op. Ramipril only as I left hospital. I tend to have lower BP . I ended up dizzy and with double vision.

[Skiffrower in reply to Skiffrower]

Since I hadn't had that with the bisoprolol in hospital, the ramipril was deemed the culprit. Stopped the ramipril and the dizziness went within days. Bisoprolol I have to take after food , it s known to affect blood sugar and I m sensitive to changes in it.

[Sailing63 in reply to Skiffrower]

Just a quick add here. Ramipril only gave me a very noticeable cough, the long running problem I had was because my GP kept tinkering with Amlodipine and Ramipril doses so uncovering the culprit which caused the real problem of racing HR and missed beats was lengthy. I stopped all meds and cleaned my system out. I then reapproached GP and agreed a restart of Amlodipine 2.5mg with a view to monitoring closely any reduction in BP and increase in side effects before dosage increased to optimal. He delayed so much I attended a cardio appt where A was increased to 7.5mg which after 2 weeks all symptoms returned and after 3 weeks I again stopped. A further 7 days to again clear my system. I kept clear and accurate records and took these to 2nd cardio appt whereby it was agreed that I probably wasn't suited to A and the change to Losartan made. Cardiologist said that A&R was a lazy diagnosis and that he and other colleagues had reservations with A especially the real rate of unsuitability but patients seemingly ploughed on plus my records clearly showed reactions at higher doses. Why I had to deliver this action plan and solution and not by GP concerns me and is why my original post extols the virtue of being prepared and engaged and committed to ensuring your GP thinks long and hard about you as an individual. My post states that my GP practice has become Teaching Practice and I believe that all my appts with trainee Dr's delayed my progress as they all simply looked at their computer (for NICE guideline durections) rather than looking at me!! Take charge of your solution by being informed and engage firmly but positively for your benefit. Keep records of your Ramipril journey and send them to GP before any consult advising you will be using them in the meeting and expect the GP to have reviewed for your appt. If they haven't, ask them firmly why? And state that you will be taking an active and informed role in your treatment plan. This should signal to any GP that you won't be treated by a default program and will have records of your individual progress. Many are well served by Ramipril so don't self worry a side effect, but if they happen, arrived at a GP appt prepared and informed will help the GP to help you.

Sorry for long post.

[Pheobgh1 in reply to Skiffrower]

Thank you for your reply. After 3 days on Ramipril I experienced continuous muscle pains in both legs, ankles and feet, and also much depleted energy. (I'm also on bisoprolol 2.5 and have been on that and Xarelto for several years.)

Sure it's the Ramipril that's causing the aches and pains. Has anyone else had these side effects?

[Skiffrower in reply to Pheobgh1]

I also was very tired but as this was within 2 weeks of open heart surgery I put it down to that . I think muscle pain is a known side effect of Ramipril .Its worth querying it with your GP. Meds are supposed to help things not make yo feel worse .

[Pheobgh1 in reply to Skiffrower]

Thanks again for replying, and thanks to Sailing63 too - I'm sure you're both right.

Since posting here I have got the agreement of the cardiologist for me to pause the Ramipril for a few weeks, then try it again to see what happens. I can't wait not to take this evening's dose!

[Blueberrylover]

Losartan

[Blueberrylover]

I have was on Losartin 100 mg for 20 years and no problems.

[penkett]

Losartan 50mg for 5 years, now increased to 100mg no noticeable side effects. Instructed to take in the evening, obviously your instructions may differ. With regard to keeping records and being informed I totally agree, when I saw my cardiologist he was impressed that I came prepared with dates, information and a quick overview of my problems so I felt the consultation was productive for both sides

[DWizza]

Well done. I believe in keeping an audit trail and written evidence when dealing with the GP surgery , it is the punch point of doom ! It starts with the ridiculous online triage to get an appointment, triaged by A.I . Reception staff that just don’t understand the requests . My doctor admitted she wasn’t a cardiac expert .. I trust her to do the right thing by me . I insisted on stopping artovastatin and she helped me find an alternative statin. I always update my consultant with an email with any changes in my meds and other medical matters . ( I recently had hip replacement, she wasn’t made aware of the up and coming surgery and I wanted her sign off not just the hip surgeon.

[jayjay10000]

Goodmorning Sailing63, thankyou for your fantastic post, most interesting reading. I just had a phone call yesterday from a Lovely lady from the pharmacy service at the GP. She told me starting from Monday I will be starting Losartan 25mg, I have been on so many different kinds of medication since been diagnosed with a TAA of 40mm. Dealing with Anxiety disorder and depression daily basis you can imagine how that effects the body mainly morning chest pain and especially blood pressure. I will let you know how I get on with this new medication which I have been informed to take it at night with my other medication for bad cholesterol, also I have to take my BP morning and late afternoon for the next to weeks and keep the results, also have to book an blood test for the 20th January to cheak kidney function because of the new medication. Take care and have a good time over the Christmas period and New year

[MountainGoat52]

I had issues with first Ramipril, then Amlodipine. Amlodipine was a medication from hell for me as it even affected me mentally. Thankfully my GP was open minded, took my concerns onboard and prescribed Losartan and I've been on that for 14 years. Currently, 6 years after a bypass op, I'm on 25mg, but I was on 100mg before the op. I'm pleased to say that I've had absolutely no problem with it.

[Jedi14]

I would agree with you about not relying on the GPs advice! I have been through a similar journey. My meds fine tumed to be at the minimum doses, I was waiting for a delayed cardiac review. I emailed all my info to the secretary and phoned my GP for what to expect, I was told that my meds would most likely be inceased-wrong!

My cardiologist told me to carry on what I had been taking and to stay on them! He has also signed me off. So no more cardiolgy unless something new happens! All that monitoring and fine tuning has paid off! Within these "belts and braces" I am enjoying the best period in my life since this all started.

[Sailing63 in reply to Jedi14]

Great to hear the point you have arrived at, I am sure its the goal of many who post/reply/contribute here, so it does show that engagement brings benefits which is suppose the theme of my original post. Whether we engage with similar people with shared experiences or we engage with professional healthcare providers, we must be informed and confident to engage with questions and our own clear observations, all of which ultimately helps others to help us, and reach the point of "enjoying the best period in my life". For some its longer and bumpier journey than others, but longest journeys start with the smallest steps. It's also amazing how empowered one feels when engaged with your own healthcare rather than just accepting what for me was unsuccessful trial and error which has led to 30 months of anxiety. Going from a very health 59 year old, ex rugby/gym and last years Fastnet "ordeal" to how I have been has NOT been a journey I would like anyone else to take, but feeling confident and positive is its own medicine and I am sure will bring its own benefits and results.

[Judithdalston]

I have Long Covid for 4 years 9 months…symptoms that have continued of concern have been high BP and HR, and ended up on 5 simultaneous hypertensives: bisoprolol, doxazosin, indapamide, losartan and amlodipine which hardly touched the symptoms. Had ecgs, echocardiogram, chest X-rays etc, nothing found and signed off back to GP without actually seeing a cardio. Got syncope/ faints which I thought self diagnosed as POTS but got a tilt table test showing postural hypotension of 61/40, and HR going up to 135 to compensate.Falls consultant removed bisoprolol immediately, and recommended next withdrawal indapamide. Yet almost a year later I am still trying to juggle other hypertensives as ‘without’ indapamide can get systolic in 180s, ‘with’ in 90s but diastolic in 50s, though average c130s/70. … but tho my averages might be acceptable it doesn’t allow for me having to lie down on shop floors instead of fainting , as shops removed chairs in covid and not returned them! Any suggestions for other hypertensives to change…my GP doesn’t and cardiologists not interested?

[Sav100]

Hi,

I had so many problems with Ramipril when I was first put on it, I got lucky GP switched me straight to Lostartin, best thing I ever did. No problems whatsoever.

Was told when I was switched, that everyone is given Ramipril as it’s the cheapest and Lostartin is more expensive which is why they don’t give it straight away.

[FordsonMajor in reply to Sav100]

I've been on Losartan for 3 years now, after Covid knocked out the Sinus Nodes in my heart and I ended up with a pacemaker. No side affects at all and BP now within healthy limits.

[Sailing63]

Thanks Sav, its amazing that as I have aged, no more do i fear a mature, informed discussion with my bank manager or GP. The days of being intimidated (bit strong here!) and accepting their decisions as gospel have long since gone. I remember my father donning his very best suit, shirt and tie to visit the bank for a very small loan, (rejected!) these days they are pestering me to borrow money!

I value their training, help, expertise and input and certainly don't go "off piste" in my health care plan, but I do now look to be informed and play the active role in solution finding rather than just take what's handed out. The cardiologist confirmed what you posted, that Amlodipine and Ramipril were "lazy diagnosis" as they were the first go-to option. Fine for those who tolerate, but after 30 months of issues I had hoped the penny would have dropped and the GP thought best to try another option, irrespective of the small additional cost. The additional costs would have been saved time and time again if he had helped sort the issue 18 months ago just in appointment times alone at the practice. Let's hope we are on the up. Today I emailed the practice owner with my case and concerns, asking that he updates my prescription to remove A&R and replace with Losartan, and for a response to why after 30 months of failures, only A&R were the medication of (failed) choice. I do hope he asks me to go for a F2F meeting, I can put all my compiled and printed material to good use.

Have a good one everyone.

[Petercat1]

Hi. I was on 100mg of Losartan taken at night with no problems at all. I had a short period where I was off bp meds, and when put back on them I have been given Ramapril 7.5mg - I have since progressed a very dry mouth which is also quite sore. I will be asking my gp to be taken off Ramipril, but of course it is now Christmas and seeing/speaking to the gp about this is a no no. This dry mouth is really such a problem and I have thought of stopping the Ramipril immediately, but I have to keep my bp as close to 120/80 due to having had an aortic dissection 7 years ago so worry what will happen to my bp if I stop the Ramipril with no substitute in place.Anyway I will push to go back on the Losartan when I am able to consult my gp.

Best wishes,

Denise

[Sailing63 in reply to Petercat1]

Thanks PeterCat1 for the response and I hope that your GP sorts the issue. I had the Ramipril cough which wasnt good and didnt shift, and whilst my GP was keen to continue (after the stress of a chest x-ray where he "had" to inform that one of the look out for's was lung cancer!!- no wonder my BP was high!). But cardiologist simply said "Why?" when there are so many alternatives which could be considered, hence my shift to Losartan. Again, my strengthening view is that we must be engaged with GP to deliver our best healthcare and be prepared and confident to question their solutions. If I hadnt I would still be living with the misery of Amlodipine and Ramipril side effects which ran me down mentally. I am hoping that Losartan is the doorway to better health in both body and mind.

Best Wishes

[Sheffield55]

Cardiologist are always the best to visit when you have cardiovascular issues. They are well trained and understand the best medication for every situation that will give you minimal side effects. All the best.❤️❤️❤️

[Jaybbb]

To Sailing 63: good post. I am like you and try to keep good records, perhaps not as detailed as you are doing. But in regard to a specialist, a cardiologist, or a GP---we know which one to trust more. But trust is not blind, one must constantly do reseach and review of what works best for him (or her). I had a stent placed in November and was put on Amlodipine 5 mg. Originally the cardiologist prescribed 10mg, but i immediately challenged that based on reseach, and it was revised to 5 mg. One can always increase later if needed. The lower dose of 5 mg is going a great job. BUT--I have only been on it for 4 months, so I am hopeful, but unsure what the future holds for this drug. Several years ago I was on Losartan 25 mg and it did not agree with me. But I stopped all at once-- without weaning myself off of it and that resulted in being admitted to the hospital for diplopia and ptosis (of the eyes). That took about 5 months to clear-up. WARNING--one needs to understand that certain drugs are dangerous to just stop with weaning yourself off of. Based on what is being said here in this post, if I have problems with Amlodipine, I will go back to Losartan 25 mg but only stop taking either drug by weaning myself off of it.