Super sensitive

[Peony4575]

So for two years I have been happily on Edoxaban and my last delivery was a generic . Took the first one yesterday and seemed ok. Woke this morning burning skin , adrenaline rushes , tachycardia and a funny head . I know what this is because this is now what happens if something is changed that my body is used to . Have had it much worse than this with bisoprolol withdrawal

Only 615am so I am going to have to wait until chemist and GP open and try and get branded Edoxaban . I will pay for it if necessary the difficulty is getting it.

Don’t know what to do this morning. Take the generic as better than nothing , or take nothing

Am not after advice really I know what I have to do , am just having a rant

[Ppiman]

Oh dear. That sounds like a response to onset of AF or other arrhythmia. If it's to the generic edoxaban, then a reaction to colouring or similar might produce an allergic response but if that were causing tachycardia, I would expect hives also and, well, rather an urgent need for treatment.

Steve

[Peony4575 in reply to Ppiman]

Thanks Steve , it’s similar to drug change /withdrawal reactions I have had before . Seems to upset my adrenal system hence the burning and the tachycardia . The reactions are always bad at night particularly with the cortisol surges around 3am and waking up. Hadn’t kicked off AF before so fingers crossed . Kardia advanced all good

In other news been waiting for that first clinic appointment re ablation . Told I would have to be seen by the end of Feb or the hospital would be in breach . Rang the private hospital to check the professors availability and he had one appointment left before an extended holiday back in March . Which means the NhS hospital would try and fob me off onto someone else . So I booked the only available private appointment on 17 January

[Ppiman in reply to Peony4575]

A New Year that will be very special, then, Peony! Let's hope so.

Steve

[Peony4575 in reply to Ppiman]

Thanks Steve. And I hope it’s a good one for you

[lynwest]

I had a reaction to a generic. Hospital requested to give me Madopar [Brand for Parkinson's] and Doctor prescribed Co-Beneldopa [generic}. After taking for 10 days, my hair starting falling out. Requested Madopar but it took year for hair to come back fully. In the meantime I wore a wig!} They told me they both had same ingredients, but I found it was the fillers which were different that caused the problem. I would, therefore, suggest you stop Generic until you can get Brand. Best of luck.

[Peony4575 in reply to lynwest]

What your doctor doesn’t tell you . Excellent podcast by Liz Tucker the latest episode is on why generic drugs are not the same . Really recommend

Generics are not always even bio equivalent , especially if they come from outside the EU, on top of which as you say the excipients are different

Sorry about your experience , that’s really awful

I have had problems with drugs before so I went into bat straight away . Rang the medicines management team at my surgery they were very helpful and prepared the script, the delay came getting the doctor to sign it

Rang my usual pharmacy they were really helpful . They now had the branded one back in . Got to 4pm doctor still hadn’t sent script to pharmacy . Pharmacy told me to go on nhs111 and order an emergency script which I did and it was with them in minutes. In the event the doctor sent his script across just in time , and one of the pharmacy staff offered to drop it off on her way home as she was going past .

It’s now on my notes at the surgery and the pharmacy that I can only have the branded and I will be ordering well in advance and double checking in future. Having had such awful experiences in the past and being known to be sensitive to drugs I won’t be accepting changes of brand in future. I was very lucky with my surgery and the pharmacy . Will be dropping some chocs in at the pharmacy they went over and above

[lynwest in reply to Peony4575]

I also have note on my prescription - only supply Madopar Brand - but it has just occurred to me I need this to be changed to - only supply Brand for any medication prescribed - because I now realise I have had very bad reactions to 2 Anticoagulants - Generics - in first 6 months last year. I was asked to give second one 'a good go'. I took it for 3 months and was very ill and was eventually diagnosed by DVT Clinic with Cellulitis who asked Doctor to STOP ANTICOAGULANTS. I am now on 1 - 75mg Aspirin per day, which I had been on for the previous 12 years after been brought round for a Stroke by Aspirin. Thanks to your Post.

[Peony4575 in reply to lynwest]

Sorry to hear that Lynn. You have been through the mill . I think that is wise . I seem to have problems everytime and not prepared to go through it. I would rather pay

[lynwest]

Sorry, missed saying Anticoagulants were prescribed for Afib.

[cassie46]

I have trouble with generic brands. Rivaroxaban which I have been on the ten years, nearly a year ago I was given generic brand, side effect I could not sleep at night. I tried it for 5 days and as I had a few of my usual Bayer tabs I took those, back to normal. Had to get the doctor to give me another prescription for Bayer pack. 2 months ago was sent another generic Rivaroxaban, same thing happened. One of the generics did say on the back that it was from Bayer but was supplied by another company and did not have the Bayer logo on the front. Now my prescription says Bayer Plc only. I have 3 other items on my prescription that also request to be specific brands. One of my problems is that so many of the generic tabs have a high lactose content and I have to be very careful because I do not tolerate it well. I am not completly lacose intolerant but almost. I manage my diet regarding this but I cannot do anything re the medication except find the ones with less lactose. I am also sensitive to colourings and additives. It has been a battle ever since all these generic medications came out trying to get surgery specify certain and the chemists, who want to dish them out because they are cheaper, have often been told they do not supply the brands I prefer because of cost. Fortunately my present chemist is very good and does his best for me.

[Peony4575 in reply to cassie46]

Thanks for your reply Cassie . It seems there are quite a few of us who don’t take drug changes well . I think my body adapts to whatever it’s given , and then when it’s withdrawn and replaced with something else the problems start . I will be doing my best to insist no changes in future