I'm hoping to get some advice from anyone who has had similar experiences to my own with regards to my many health issues. Some background as follows..
I have inherited Cardiomyopathy which was controlled well by drugs for the last 15 or so years. Back in 2018 my condition had worsened so I has an SICD fitted.
After this surgery life continued as normal until March this year when I suffered a heart attack brought on by a Covid related blood lot, the additional damage to my heart took me from an LV of 34% down to 25%.
For the 1st month or so following the attack I was doing very well but in April my ICD fired for what I thought was the 1st time (apparently it had gone off during the heart attack but I didn't notice!) this was certainly an experience but I'm glad to report that, in my opinion, the anticipation and fear of the device firing is actually worse than the real thing. I only say this in case some people are weighing up if they should have one or not but mine certainly saved my life that day.
Following on from this episode I started to go downhill quite fast, I was finding daily life more and more difficult due to breathlessness and fatigue and generally feeling very unwell. During this time I could not sleep for more than an hour or 2 at a time and my weight plummeted as I was barely eating anything. I'd never quite been able to comprehend how a person could hope for death but after 3 or 4 months of this the thought of dying was actually starting to seem like a fairly decent option, something I'd never had considered just a few months earlier. I was constantly in touch with my GP regards the sleeping issues but they would not touch with the proverbial bargepole which was incredibly frustrating, there were points I was literally begging them for help but it got me nowhere, have to admit I'm still slightly bitter about that as they left me to suffer a great deal.
I was getting the same response from cardiology but eventually, after many calls, I finally managed to get an appointment at the heart failure clinic, it had been a total of 7 months since I was discharged from hospital following the attack and the stent being fitted and I'd not seen a soul regards my condition. All we got was covid this, covid that etc but the fact remained that this lack of treatment has severely damaged my outlook.
So... the advice part!
The 1st thing they did at clinic was to stop Perindopril and start Entresto, within 2-3 hours of taking the first new pill I was a changed man, energy levels were sky high, breathlessness was still there but the improvement was amazing, I hate to say its been a miracle drug for me but it really has worked that well. I know the results would not be the same for everyone but I would encourage anyone with heart failure to at least give them a try.
Obviously there are side effects which is why I need some advice. The most notable and obvious is I am now retaining fluid in my ankles, or "fankles" as I like to call them. This has never been an issue for me before but started the day after 1st took the new pill so has to be related. The severity comes and goes along with quite large fluctuation in my weight so I wondered if anyone else had experienced this and if so did you find a way to alleviate it while remaining on the drug for all the positive reasons?
The 2nd and possibly most annoying is the itch which can drive me insane, I have literally scratched myself until I bleed which is not not as I bleed a lot. The sensation is most severe around the elbows and upper / lower arms, it can feel like an overall burning sensation but also like some tiny insects are biting or stinging. There is no rash to be seen and the only visible damage is the cuts and bruises I've caused myself. Scratching offers a very temporary relief but a few moments later the feelings are back with a vengeance. Even though I'm well aware it'll make it worse sometimes I just can't resist and a damaging scratching session begins and usually end in blood being spilt which isn't ideal. I finally managed to find a doctor at my local GP who was willing to at least try and help so I've been prescribed all sorts of creams and pills but nothing works, oddly enough this issue is putting the most strain on my life at present as it keeps me awake all night and also interrupts my partners sleep. I assume the issue is drug related so wondered if anyone has had similar symptoms and if you managed to alleviate them in any way?
Many thanks and apologies for the large post!
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Jona78
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Hi, thanks for the reply! I'm currently awaiting a second round of bloods regards this as they know my internal organs are taking a beating at the moment, the results are still a few weeks off though so I was hoping that someone with a similar issue could recommend a certain cream or, well, anything really.
Call your hospital and see if there is a dedicated cardiac nurse from the clinic you attended that you can chat with. Many hospitals have dedicated heart failure nurses. They are usually very helpful and have direct contact with the cardiologist.
The clinic number is usually at the top of the appointment or discharge letters.
Express your concern about your new swollen ankles, large weight fluctuations and severe itching since starting the medication.
Record your blood pressure and weigh yourself at the same time each day and keep a record. This information can be helpful to the doctor.
I am not sure why you have to wait several weeks for the lab work, you should be able to get results back on blood chemistry within 7 days at the most.
Hi I had dilated cardiomyopathy and severe heart failure and I was on entresto for a few years, are you on ferusomide and or spironolactone, I was prescribed both for fluid retention, I was on the lowest dose of entresto as I had really low blood pressure and I couldn't tolerate a higher one they did try, but I never had any itching, could they lower your dose? to see if that would help, having had psoriasis I can sympathise with you although you sound a lot worse than me ,when my icd fired I never even noticed only found out when I got a phone call from the clinic it saved my life, I ended up needing a transplant, the old ticker just gave up, I received it in July this year, the new heart is fine but the side effects from the immusupprestants and steroids are horrible, plus point my psoriasis has completely gone, I hope you can find a solution for the itch, they are inclined to let you put up with things like that as medicaly they are not dangerous but I feel quality of life is just as important, keep us posted on how you are doing take care char
Thank you for the reply, I've just read my post back and it doesn't make it clear that the itch was pre Entresto so apologies for that! I've had it for at least 3 months now and while the severity comes and goes it is pretty much constant. I know its only an itch but it does keep me awake at night so I'm getting somewhat desperate for relief! I do take quite a lot of furosemide at present, 200mg a day overall but I have noticed the effects have weakened of late. I've never had spironolactone.
I found your reply very interesting as I will, covid allowing, be going into hospital next month for the tests to see if I am suitable for a transplant or a mechanical pump to aid the existing ticker. To say I am somewhat nervous would be an understatement, not for the tests themselves but for the outcome. I'm not sure if I'm more worried that they'll say yes you can have it or no and let nature take its course. Its fair to say that now I'm feeling so much better on a day to day basis the thought of popping my clogs doesn't have the same appeal as when I was feeling so very ill.
Was it difficult decision for you, do you have any regrets?
Hi, it was a bit of a whirlwind for me, after the shock diagnosis, it was only a few months before I was admitted for tests to find out if I was suitable for a transplant, all the usual tests and a psychological one as well, although the decision was obviously up to me they didn't really mention the alternative! I didn't ask, I felt I could think about it and come off the list at a later date, I was on the routine list for two years, and I had some really dark days, but I made yet another mistake of not seeking help from the hospital, I could have spoke to the psychiatrist at any time, but I thought I could deal with it, I live alone and felt I couldn't bother the family, eventually I got help and the next shock was suddenly getting upgraded 🙄to the urgent list, given two days to pack up my house and be admitted, again it was so quick I never had time to think, no visitor's nothing, the actual surgery was not anywhere near as bad as I thought, home on my own 3 weeks later, new heart is doing well I can definitely notice the difference, but the side effects of the meds are not good, at the moment, early days they say, but I am hoping this time next year I will be a new woman, travel insurance will be normal price and covid will be gone, sorry for being so long winded it was a quick but difficult journey, and I didn't help myself by thinking I could do it alone, the help is there and the questions will be answered to help with your decision, I probably would still have went for the transplant, I am 62 mabe age is a factor as well, a patient in my ward was only 27 I guess it can happen at any age, he got his transplant, take care and keep me posted how you are getting on, message anytime if you want to ask anything, take care char
Thank you for the reply, I am of the opinion that, if offered, I will be going for a transplant. Its good to know you are on the mend and your story has given me some hope for the future, won't be too long till I find out now so I'll keep you posted! As for questions I guess the 1st thing that popped into my head is "what are the immune" drugs like, side effects and the like? I assume once a healthy ticker is installed the need for the cocktail of drugs we'd normally take goes away?
Hi, I have been up and down a bit with the drugs, I have two immunosuppressants, steroids, lansoprazol and statin, the hospital has adjusted them quite a lot which has helped, I was on an antibiotic as well but my kidney function went down so they took me off it, at the moment I have the steroid moon face, a funny taste and shakey hands, but they are going to start bringing the dosage down and hopefully all that will go away, so I suppose its a small price to pay short term for which could be a much better life, the two immunosuppressants I will have to take for life but again they hope to reduce the dosage, I think everyone gets some side effects and all different ones and that's why it's so difficult to get the dosage right, but my clinic visits have been cut from every week to every three weeks, which is reassuring that all is going well, I couldn't drive for 10 weeks till my sternum healed that was a pain, its fine now and scar looking good take care char
Will do Dave, the GP I found who was willing to help isn't mucking around so I have a CT scan this afternoon regards the issues. Having self diagnosed on Google (not the best idea I know!) I came up with a nerve damage condition which matches my symptoms exactly called Brachioradial pruritus, I know its unlikely but I seem to have everything else so it could be the cause
I take Entresto 49/51 mg twice a day with no major problems, but I was admitted to Hospital when my skin became very flaky and started to drop off at an alarming rate. The reason was found to be caused by Salicylates which is found in Aspirin. I had been taking Aspirin for a while it was just all of a sudden my body didn't like it anymore. It may be worth a consideration if Salicylates are in any of your medication ??
I do take Aspirin to thin the blood so it may be the cause, funny how you can tolerate things for so long and then change almost overnight! Thank you for the advice!
Hi, re your itchy skin. I’ve found ‘O’Keef’s Skin Repair 48 hour Body Lotion Guaranteed Relief for extremely itchy skin’ to be very effective for me. It’s worth a try. Hope it helps
I ask because my husband had Covid (along with myself) last spring and he developed this awful, menacing itch, a rash, weeping legs which would not heal and which the district nurse had to treat. He suffered severe itching like yourself whereby he couldn’t sleep for it and had to wear gloves in bed!
He had been taking Felodopine for 3 months for high BP, along with his usual Perindopril but he cut out the Felodopine when this itching began after reading the side effects. However the rash, weeping skin, itching, swollen ankles and wrists, etc., did not abate. He suffered from April to September with it. His doctor was no use and admitted he could not make him better. The GP did not connect the dots to the drugs side effects or Covid. Even now he still has bouts of itching and his lower legs are still red but the worst is over.
It could be possible that having had Covid and taking these drugs caused this issue. Covid attacks the nervous system and blood. We must have an open mind about this because there is so much we don’t yet know about Covid and how it affects people long term after the infection abates and how it interacts with the drugs one is taking.
Just our point of view and open mindedness.
I do hope you find answers which will help you. Best wishes, T57
Thank you for the reply, I did have Covid back in March so I don't rule anything out even though it seems like a bad memory now. Hopefully todays CT scan will find something!
Wishing you all the best Jona with your CT scan today.
Please can you update us upon getting your results because a lot can be learned from others experiences. It would be interesting to hear what your specialist thinks caused your ongoing irritations.
Would you mind sharing the name of the drug which your friend was taking which caused their itching?
I ask because of the situation my husband has gone through with itching this summer and we believe it’s drug related and possibly interacted with Covid which he caught last spring.
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