Puzzled : Hello lovely people. I'm in a proper pickle... - NRAS

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Puzzled

Gnarli profile image
47 Replies

Hello lovely people. I'm in a proper pickle at the moment, so would appreciate your views, comments or experiences. My blood pressure is, apparently, too high so was put on amlodipine 5mg. After the first couple of days, being catatonic, things resolved a bit but leaving me dizzy, unsteady on my feet and with a banging headache and a horrible increase in tinnitus. On the PIL it warned of oedema in the feet. So, to the problem. My feet and ankles are grossly swollen and painful to the degree that I can't walk far. Would you think this is RA or the amlodipine?

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Gnarli profile image
Gnarli
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47 Replies
Wobbies profile image
Wobbies

I have been put on it too but have had no side effects. However, I did have a call from an "audit Nurse" not long after I started it asking me about all those side effects. She intimated that it is a relatively new drug to the NHS and they were still assessing it. So, not much help but thought I would just share.

Gnarli profile image
Gnarli in reply to Wobbies

Thank you. I've already told the GP it wasn't suiting me to no great effect. Grrr

Tkat10 profile image
Tkat10 in reply to Gnarli

You need to be firmer and ask for a change it took me changing three times to get one that suited me. Do not accept negative side effects as they are effecting your quality of life.

Gnarli profile image
Gnarli in reply to Tkat10

Thank you

Madmusiclover profile image
Madmusiclover in reply to Tkat10

Agree totally.

AgedCrone profile image
AgedCrone in reply to Wobbies

That nurse was wrong…..I have been on Amlodipine on the NHS for over 15 years. Anyone having symptoms like Gnarli describes should speak to their doctor immediately.

Annscottie profile image
Annscottie

Hi Gnarli. I was put on Amlodipine a few months ago and my GP said the most common side effect was swollen ankles but to go back if they hadn't sorted themselves out in a couple of weeks. I was fortunate in that I only had slight swelling and it did resolve but by the sounds of it think you need to get in touch with Dr asap. Hope you get sorted soon.

(Unfortunately my BP is still very high so think he may up the dose. Wonder what will happen then!? 🙄)

Gnarli profile image
Gnarli in reply to Annscottie

Oh I'm sorry your BP is still too high. Apparently, there's loads of higher doses of amlodipine as well as other meds. I hope they sort it out soon.

Tkat10 profile image
Tkat10 in reply to Annscottie

Are you taking regular anti inflammatory drugs? I discovered that my Etoricoxib is contra indicated with many of the blood pressure medication and can only take a couple of days max in a row. Strangely the gp and rheumatologist did not flag this or seem concerned. However it is apparently well know but I have never had these risks explained in 24years. pubmed.ncbi.nlm.nih.gov/247...

Annscottie profile image
Annscottie in reply to Tkat10

Hi Tkat10

Thank you for your reply. I take hydroxychloroquine and sulfasalazine. I did tell the GP this when he prescribed the Amlodipine. I also did a check and it seems that hydroxy and amlodipine can cause nerve damage and liver damage. If my blood pressure medication has to be increased then I think that is time for another conversation with GP. Maybe I should chat to rheumy doc too.

springcross profile image
springcross

Hi Gnarli. I have been taking these @ 5mg for four years. At first, I had really bad swollen feet, heels, ankles and lower legs with a horrible rash and very dry skin on my legs too. GP said it was the steroids I was taking but as soon as I finished the first prescription and got a new one which was a different brand, the swelling went. Coincidence or not, I really don't know but I've always thought it was the excipients in the tablets.

Gnarli profile image
Gnarli in reply to springcross

I've been on the same dose for nearly four months with three different brands. Fed up now

springcross profile image
springcross in reply to Gnarli

I would be too! Hope you can get it sorted. Have you tried a different medication?

Gnarli profile image
Gnarli in reply to springcross

I have an appointment with a different GP booked. This cannot continue.

springcross profile image
springcross in reply to Gnarli

Good for you.

AgedCrone profile image
AgedCrone in reply to Gnarli

Four months is long enough to know Amlodipine isn’t suiting you..I’d ask to be referred to a consultant. …who really understands hypertension & it’s sideffects…& which medication you need.

I was referred to a cardiologist who said he wished GPs would admit what they don’t know & refer their patients before they get your distressing symptoms.

Gnarli profile image
Gnarli in reply to AgedCrone

Thank you. I'll give it a go

medway-lady profile image
medway-lady

if your feet are swollen then it’s GP asap as it might need urgent treatment. Please don’t leave this it might be serious.

Gnarli profile image
Gnarli

Thank you. I've already seen the GP twice about the side effects only to be told to persevere for a while longer. I won't

AgedCrone profile image
AgedCrone in reply to Gnarli

If your doctor is no help do ask your pharmacist ..they are the experts on whether after 4 months you should change.I was prescribed Amlodipine after other BP meds had failed to control my BP. Luckily I had a GP at the time who admitted she was out of ideas & referred me to an NHS. Cardiologist who sorted me out.

helixhelix profile image
helixhelix

No don’t! Lots of other options.

Mostmoses profile image
Mostmoses

Amlodipine did this to me too. Call right away! There are alternatives. I’m now on Teveo with no issues. Good luck!

Gnarli profile image
Gnarli in reply to Mostmoses

Thank you

AgedCrone profile image
AgedCrone

It could be the Amlodipine…..Speak to your doctor & ask if you can take it at night rather than in the morning.I had dizzy spells when I first started Amlodipine…but no swollen ankles …& changing the time I took it solved the problem.

But please DON’T just do it …..take your doctor’s advice first.

Gnarli profile image
Gnarli in reply to AgedCrone

I do take it at night and the dizziness has resolved but feeling generally rubbish. My ankles, feet and heels all hurt so that I can hardly walk. The GP wouldn't even look at them. I'll be seeing another GP but can't get an appointment until 13th. It's no fun

janmary profile image
janmary

I didn’t have the other symptoms but did have swollen lower legs - and arms! on a low dose of amlodipine - was changed to another sort of treatment immediately

Seatgeorge profile image
Seatgeorge

Ask to change to a different blood pressure tablet, they can cause severe swelling of the ankles, or ask your gp I'd you can stop takingvthem for a week and see if you Improve

Gnarli profile image
Gnarli in reply to Seatgeorge

Thank you. I stopped them six days ago with no great difference. Still look like a hippo!

Conster profile image
Conster

Hi had the same problem doc put me on losarten been fine with that

Gnarli profile image
Gnarli in reply to Conster

Thank you

CCL_JMFAN profile image
CCL_JMFAN

Hi,

it sounds like classic Alodipine - your reaction to it is quite extreme, though, so I would advise to return to the Quack and see if you are suited to another variety - there are quite a few around!

Hope this helps

Gnarli profile image
Gnarli in reply to CCL_JMFAN

Thank you

cyberbarn profile image
cyberbarn

Something else to throw into the possibility mix is that sometimes blood pressure taking in the GP surgery is not accurate. The digital machines have algorithms in them that make up the figures, changing them into mm of mercury to get the classic X over Y. For example if you have very low blood pressure it doesn't know what to do so it just makes figures up. Also blood pressure is often not done properly. This is the conclusion from a peer reviewed study, note they used the mercury style, not the digital ones:

"In our study, 90% used mercury type sphygmomanometer. Zero error of the apparatus, hand dominance was not noted by any one. Every one used the standard BP cuff for recording BP. 70% of them did not let the patient rest before recording BP. 80% did not remove the clothing from the arm. None of them recorded BP in both arms. In out patient setting, 80% recorded blood pressure in sitting position and 14% in supine position. In all the patients where BP was recorded in sitting position BP apparatus was below the level of heart and 20% did not have their arm supported. 60% did not use palpatory method for noticing systolic BP and 70% did not raise pressure 30-40 mm Hg above the systolic level before checking the BP by auscultation. 80% lowered the BP at a rate of more than 2 mm/s and 60% rounded off the BP to nearest 5-10 mm Hg. 70% recorded BP only once and 90% of the rest re inflated the cuff without completely deflating and allowing rest before a second reading was obtained."

One of the symptoms of low blood pressure is dizziness. It is well known in geriatrician circles that GPs take blood pressure, often incorrectly, declare high blood pressure, then put older people on tablets to lower it. Patient becomes dizzy and falls, ends up in hospital under a geriatrician. First thing they do is take them off the blood pressure tablets.

Not saying this is your problem, but it is worth considering just how high your blood pressure really is, and figuring out if the mediation has lowered it too much which is causing the symptoms or whether it is indeed the drug causing the symptoms.

Gnarli profile image
Gnarli in reply to cyberbarn

Thank you for your comprehensive response. The blood pressure has been noted in several instances, including during a Rituximab infusion. Some have used manual sphygmomanometers whilst others the automatic type. All showed a raised blood pressure and 'white coat syndrome' mentioned. With my family's history of cardiac events and TIAs it's something I am very aware it needs to be addressed asap

cyberbarn profile image
cyberbarn in reply to Gnarli

It sounds like you might actually have genuine high blood pressure then. I hope you can find something that suits you. It is worth remembering that the number needed to treat with amlodipine is around 16, that is for every one person that gets benefit from the drug, it has to be given to 16 people. that means 15 people will get no benefit. It isn't that the drug is no good, it is that everyone is different and reacts to drugs differently. I hope you find your ideal drug soon.

Gnarli profile image
Gnarli in reply to cyberbarn

Thank you. You're very kind

Pippy25 profile image
Pippy25

Gnarli I am so sorry to hear of what you are going through and hopefully you can get to the bottom of this and soon too, bless you. Lots of lovely people have already given some good advice but I wanted to send you my warmest of wishes. Take care xx

Gnarli profile image
Gnarli in reply to Pippy25

Thank you, sweetheart. That means a lot. I hope you are doing ok?

Green230461 profile image
Green230461

you poor soul. Not every drug suits everyone! Speak to GP TODAY. 🙋🏻‍♀️

I was given Losartan and my pressure is now “normal” great news 👍🏻🤞🍀

Gnarli profile image
Gnarli in reply to Green230461

Thank you.. you're very kind

Blackberrywine profile image
Blackberrywine

I would speak to doc ASAP. I had an issue with amlodapine. Made me hellishly dizzy. Swollen feet not good!

Gnarli profile image
Gnarli in reply to Blackberrywine

Thank you. I'm glad you were listened to and the med changed

Garnacha profile image
Garnacha

Hi Gnarli, my blood pressure kept rising & rising, the rheumatologist said its not his bag & to speak to the gp.

Mentioned to the gp who said if I have a monitor at home to record both arms in the morning & again each evening, after a week to send in the results.

All readings were mainly above 150/80, saw the gp who said to wait 6 months & he'd review it again, I wasn't happy with this as I know of the risks of stroke & cardio damage. I was taking lefluminode at the time which can raise blood pressure, I believe its both the rheumatologist & the gp who should be concerned so I stopped the lefluminode. I'm also on hydroxychloroquine, etoricoxib, sulfasalazine, gabapentin.

I was called for a medication review & said to the gp pharmacist I was concerned with my constant high readings (I hadn't seen him before) he asked me to again record my readings & send to him, he rang me the next day to say they'd like to start me on Amlodipine 5mg. He said one of the side effects can be swelling of the feet & ankles but if that happens it usually settles down after a few weeks but if it was a problem to let them know.

I didn't have any swelling but my blood pressure remained high, they added in ramipril at 5mg, still kept reading high so added another 5mg of ramipril (take one in the morning & one at night)

Still didn't lower it but was recently started on sertraline due to anxiety, this was at 50mg then increased to 100mg a day, saw the MHN last week & mentioned my blood pressure wasn't lowering, she said it could be the anxiety so to increase sertraline to 150mg to see if it helps, at last it's started to come down however, every night all I can hear is the whooshing sound in my head so I've started again to take readings.

I saw a post a few days ago that someone on sulfasalazine had high blood pressure & anxiety & apparently its a known side effect, now I'm unsure if it was the lefluminode or sulfasalazine that's causing it!

It's such a minefield. I hope you get some answers soon.

Ps. Sorry for the long winded reply if you're still reading 😉🤣 x

Gnarli profile image
Gnarli in reply to Garnacha

Minefield is a very polite way to describe it! Thank you for your kind response

MerielPB profile image
MerielPB

If they are listed side effects, then you ought to contact you GP to get it checked out. Possibly they need to change to another medication.

Gnarli profile image
Gnarli in reply to MerielPB

Thank you. You're very kind

Gnarli profile image
Gnarli in reply to MerielPB

Thank you. You're very kind

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