Clodripogel experiences?: Hi all, Following my TIA... - MPN Voice

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Clodripogel experiences?

Ovingite profile image
19 Replies

Hi all,

Following my TIA my meds were changed do that aspirin was replaced by clodripogel, I was put on Atorvastatin and increased dosage of Lisinopril to minimize the risk of further strokes. Hydroxycarbamide stays unchanged at 9x500mg PW.

All was ok for 3 weeks then I started getting severe dizziness and a few 'almost' falls. If anything they are getting worse, which leads me to suspect the meds - particularly clodripogel.

I'm a bit sceptical about non-sourced articles on the web, but there are a few that suggest that clodripogel and statins don't always mix well. Does anyone have any first hand experience of this? I've also seen it reported that clodripogel aims to reduce platelets (same as hydroxycarbamide) rather than being an anticoagulant. I thought that anticoagulant was what was needed to prevent strokes???

So the bottom line is that I'm as confused as hell and once more seeking guidance from my MPN pals before I go back to my GP / Hemo.

Many thanks

John

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19 Replies
Tico profile image
Tico

Hi john,i currently take 3 hu daily & clopidogrel & atorvastatin,like u i was on aspirin b4 a stroke 2015, previous tia b4 diagnosis of et just over 10yrs ago.after the stroke (2015) stroke consultant put me on clopidogrel saying it was much better 4 me as it wud make my platelets less sticky & haemo agreed.i also like u still get the dizziness & almost falling over feelinhg,almost like i'm feel like i'm going 2 ave another stroke,(very frightening). Happened again recently wiv a lot of left sided weakness,friend took me & my daughter to a&e were triage immediately took me thru b4 i knew it was seen by dr, who called stroke team. After discussion they admittf me 2 stroke ward wereby pure chance the next day i saw my original stroke consultant,(sure put a smile on my face as i had a good rapport with her b4,renembered me also) who sent me 4 mri which showed up old stroke but thanfully nothing new,consultant wanted me 2 stay another day 4 monitoring,on rewiew thought i had somethhng called a 'postural hypoperfusion' & wanted me 2 ave a ct with the dye thru 2 ave a closer look at my blood vessels,didn't want 2 stay another day after 2 days on stroke ward,got 2 much loved moggies at home,hard 4 family 2 keep going in 2 feed them,so discharged myself but must say appointment was quick,around 2 weeks of leaving hospital,waiting on results of that which is on 6sept,a day after haemo appointment on the 5th,not like i originally posted when i thought both appointments were in october! Doh! Brain fog getting worse or cud it be age creeping up! Lol.anyway john if u ave any concerns ask ur haemo.p.s. don't think its the clopidogrel causing it, i've been on it 3yrs nearly. Atb tina.

Ovingite profile image
Ovingite in reply to Tico

Thanks for responding Tina. I'm going to try to talk to docs tomorrow (if there is a free slot) and I'll let you know how I get on. I guess we all respond differently to our meds.

John

john0084 profile image
john0084

Hi John I take clopidogrel 75mg, atorvastatin 20mg and 1 hydroxy every other day. I'm recently diagnosed with Pv ad have had 5 blood lettings with more to come, but my side effects are fairly mild, unlike you I haven't had any dizzy spells hope you get some answers soon all the best john

Ovingite profile image
Ovingite in reply to john0084

Thanks John. I will see if the doc offers any alternatives, but also thinking of changing the time of day that I take meds to see if that has any effect. Dizziness etc is usually worse before lunch than after. Up to now I have always taken 'blood thinners' in the morning and hydroxy & ace inhibitors just before bedtime. Might try switching it round a bit. Nothing to lose I guess.

John

JackLina profile image
JackLina

Can't add too much here except to say that the symptoms you describe are what I had from statins, any statins. That and terrific pain in the backs of my hands and all muscles.

It took me a while to get used to clopidogrel and I fought not to take it but after a number of years.....yes, years, I don't even notice anything. But then, I have since been diagnosed with ET JAK2 and administer Pegasys weekly, so perhaps all the associated symptoms and side effects have taken over.

Truly though, the evidence against statins is 'mega' s perhaps you may research that before stopping your life-saving clopidogrel. ATB Penelope

Ovingite profile image
Ovingite in reply to JackLina

Thanks Penelope,

Your experience with statins is very interesting as I was coming around to thinking they may be the cause. Actually I decided to switch taking them from pm to am, so didn't take one last night - and I feel quite 'normal' this morning. Maybe that's a coincidence but it will be interesting to see if i get a recurrence of the dizziness later in the day. Dizziness doesn't seem to be one of the known side effects of Atorvastatin, but I guess we all respond in different ways

John

revfee profile image
revfee in reply to Ovingite

Hi John

you really should see your GP to discuss this. My understanding is that statins need to be taken at night....

Good luck

Fee

Tico profile image
Tico in reply to JackLina

Must agree penelope to ur answer regarding clopidogrel 2 john(ovingite). Also know theirs a lot of controversy over statins,depending on which bit of research u read! Mind u its like everything these day's, take certain food or drink,1 day its find the next its going 2 cause cancer,if u believed everything u read wud barely eat & drink these days & live on fresh air alone! Oh, sorry i 4got all that pollution!

Wyebird profile image
Wyebird

I’m on clopidogrel, I ve been told that is it does the same job as aspirin. I’m also on simvistatin.

My advice is see your GP. NOW! You’ve had a TIA. You really don’t want a stroke. I had one and luckily enough came through it.

Good luck

Ovingite profile image
Ovingite in reply to Wyebird

Thanks Wyebird. I'm trying to get an appointment with my GP - suspect it might be easier to get an appointment with the Pope 😒 but I'll keep pushing.

John

Mazcd profile image
MazcdPartnerMPNVoice

Hi John, go and see your GP about this. Maz

Ovingite profile image
Ovingite in reply to Mazcd

Thanks Maz. Not easy to get an appointment with my GP (4 week waiting time) so I'm going to crash the system tomorrow to get an emergency appointment (tried & failed today). Needs must I suppose.

John

Mazcd profile image
MazcdPartnerMPNVoice in reply to Ovingite

Hi John, you must insist on an appointment or a phone call from your doctor. Maz

Ovingite profile image
Ovingite in reply to Mazcd

Thanks Maz. I'm already on it - just waiting for a triage call from the GP

John

Kari1961 profile image
Kari1961

I took Clopidogrel for 5 days after discharge from hospital after having a stroke in 2012. I felt worse during those 5 days than I had either before or just after the stroke. I could barely stand due to dizziness, right sided weakness (which had previously improved with intensive physio while in hospital) and my whole body was covered in small deep red blood blisters. My GP deduced that I was having an allergic reaction to Clopidogrel. I stopped taking them and within 3 days I felt great on good old Aspirin. I agree with others... go and see your GP.

Ovingite profile image
Ovingite in reply to Kari1961

Ouch. Sounds like your reaction was much more severe than mine. Glad you are sorted now. As you will see from other posts, I'm trying to follow advice and see my GP, but it's not easy

John

Rachelthepotter profile image
Rachelthepotter

Hi John

Merry6 posted about beng on an oral anticoagulant , and I’ve been on rivaroxaban ( an oral anticoagulant) since I had pulmonary embolisms before the MF was diagnosed. NICE says the oral anticoagulants cost the NHS less than warfarin long term, but GPs don’t always see it that way.

I’ve found that the hospital pharmacists can can be very good at explaining how drugs work. I’ve never taken clodpigigrel or asprin so I can’t compare with rivaroxaban from experience.

The Mayo clinic website has useful info about drugs and links to the standard sites for drug interactions, if you haven’t found them already.

Hope it wirks out

Rachel

PS I’ve had some problems with replies ‘ve written dsappearng, so if they reappear from the ether you might getva different version saying the sane thing.

Ovingite profile image
Ovingite in reply to Rachelthepotter

Thanks for your response. Fortunately I have my own route into drug advice as my daughter is a Dr (also a Rachel 😉) but she cannot prescribe for me. But still a very useful source of info

I will post an update to everyone once I know what's happening

John

Gingercrusher5 profile image
Gingercrusher5

I was changed to clopidogerol after my tia I recently discovered that clopidogerol is counter to another of my medication so My gp has changed and stopped the clopidogerol.it pays to read up about medication My gp was away and in his absence another gp prescribed a drug to ease my sleep which can cause deafness - I am already a tad deaf

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