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If it isn't one thing it's another!

Posted , 5 users are following.

Allexie
Allexie

Just had my second check up after my P/E in January of this year. Heart echocardiogram & 3 day heart monitor shows everything has returned to normal....yay! During a discussion about changing from Warfarin to Rivaroxaban, (I'm going to be a 'lifer' on anticoags) I mentioned that my hair was thinning and falling out and that was the reason for requesting the change of meds as I was told hair loss could be a possible side effect of taking Warfarin. Further questions from the consultant re muscle weakness, joint pain, skin rashes - all of which I have had to some extent - and it turns out that I may have an auto immune disease rather than a reaction to Warfarin. So now waiting to be referred to a haematology specialist. Gawd! If it isn't one thing it's another. Anyhoo, about to change the medication and the consultant said to stop the Warfarin for a day before starting the Rivaroxaban but chemist says to change without a day free? Anyone any idea which is best? Also, is it usual to have a 'loading dose', 3 weeks of 15mg twice a day, then 20mg once a day from then on? Any advice/comments would be very welcome.

Thank you

0 likes, 17 replies

17 Replies

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  • Supertractorman
    Supertractorman Allexie

    Posted

    Allexie, I just hope Rivaroxaban works for you,as it seems to be a bad tablet for me and I am on it for life, but I seem to be never away from the Doctors and A & E with nose bleeds lasting 45 minutes with bad Headaches and Earache plus chest pains. My Doctors are refusing to give me Warfarin for a trial as in my opinion at least they seem to monitor the dosage they give you on a regular basis.   I am told Rivaroxaban stays in your system for 3 days as I am going for a Haemmoroid operation next week and have to stop that for 3 days before, but on the 3rd day self inject Fragmin at least 24 hours before the operation.   It would appear that whilst Rivaroxaban is an approved drug, there is little known about its long term effects and its interactions with other drugs, so I guess we are all on a learning curve.
    • Allexie
      Allexie Supertractorman

      Posted

      Hi there and thanks for your reply.  There just doesn't seem to be a perfect anticoagulent does there, (and little interest in finding one mebbe!!).  I've had problems on Warfarin...I found the dietry restrictions very difficult as I'm veggie and being sent all over Yorkshire to have the blood tests was a PITA.  It does feel rather scary that the Rivaroxaban cannot be reversed in the way that Warfarin can so the possibility of bleeds has to be considered.  I will just have to give up the extreme sports I guess wink  Good luck with your op and hope things improve for you in the future.
  • Supertractorman
    Supertractorman Allexie

    Posted

    Allexie,  Also it is correct you start automatically with a loading dosage.
  • Supertractorman
    Supertractorman Allexie

    Posted

    Allexie,  It would be good to read on here any comments anyone has on either medication, its good and bad points, and what to watch out for as users will always give an honest answer, and as I take a fair amount of medication you often do not know what is causing a problem.

    David

    • Allexie
      Allexie Supertractorman

      Posted

      I started with a loading dose with Warfarin too (after a few days of injecting Tinzaparin) but who knows what the standard protocol is supposed to be!!!  I agree it would be great to hear of other's experiences....I have found out much more from reading the forum and asking questions than I ever have from the so-called 'experts'.  I dare say there is loads of info on here already if we just knew where to 'dig' for it....
    • sheila91262
      sheila91262 Allexie

      Posted

      Hi Allexie, The charity, Thrombosis UK, can be useful for info and support plus they have a facebook page or 2,  where quite a few "lifers" post.

      If you are not happy about your care you can ask your GP for a referral to St Thomas' Hospital London where they have world renowned Vascular and Haematologist Consultants. They do lots of research so are very up to date. You don't have to stay under their care if they are distant but they can get you through the first part and make you feel more confident.

      The annual World Thrombosis Day Conference is on You tube if you want to watch it, 2014 is online and 2015 is due soon.

      Good luck. Sheila.

    • -.a-way_forward
      -.a-way_forward Allexie

      Posted

      Hi, I'm bracketed as a 'lifer' as well. I may fall into a group of people my doctor suggests thrombosis is a mutation in the blood. In simple English, they don't know what caused/causes clots, but the medication rivaroxyban will prevent my blood from clotting in the future.

      I'm not a doctor, but its of my opinion the transition from warfarin to rivaroxyban may thin the blood more than necessary via load phase, hence the bleeding or.... I was under the impression rivaroxyban has a half-life of 12hrs. If a vte patient has to stop medication for surgery or blood tests - would they need to restart the load phase again?

      Also, from a 'lifers' point of view, I wonder if the body can develop a tolerance or even rejection of the medication. For example, I should take 20mg daily. Would it be feasible for my body to require a range of dosage, for example 20mg +/- 5mg....or even a longer term option- design a treatment programme with the aim of weaning off the medication entirely, through use of blood test kits, lifestyle, and management of wellbeing and human spirit.

    • Allexie
      Allexie -.a-way_forward

      Posted

      Hi there and many thanks for your thought provoking post.  As you ususally do you have raised some interesting points!  If and when I ever do get to see a haemotologist I will make a note to ask about the possible need to restart with a loading dose if medication has to be halted for some reason and also your comments about tolerance/rejection and the possibility of self management.  I would be extremely interested to follow up those points.

      With thanks and best wishes

      Alex

    • Allexie
      Allexie sheila91262

      Posted

      Thank you very much for the reply Sheila.  I will bear in mind your info about referral to St Thomas' Hospital....I has no idea that was possible.  I will seek out the YouTube videos too. 

      With grateful thanks and best wishes

      Alex

  • tina2222
    tina2222 Allexie

    Posted

    Hi alexie I've been on riveroxaban since sept 7th. Initially I was taking 30mg for 1 month now 20mg . I suffered diarrhoea a few days after starting it , this is a known side affect and wAs told to continue with the medication it settled quite quickly. About five weeks into taking it I suffering from Brest tenderness but it's a small price to pay. I am also suffering from heartburn. These are side effects but if it prevents a blood clot then it's not too bad. The good thing is no monitoring your levels so no blood tests. Hope this helps
    • Allexie
      Allexie tina2222

      Posted

      Thanks Tina, it certainly does help to know of the experiences that fellow 'clotties' have had when on various anticoags.  It's all very well to read of the possible side-effects but to hear how it was for a 'real life person', how they dealt with it and their feelings about it all is so much more useful.  Eek.... the diarrhoe sounds a bit worrying....I will have to arrange my social calendar to accomodate!!! smile

      Wishing you all the best

      Alex x

  • Supertractorman
    Supertractorman Allexie

    Posted

    Interested to read from Tina about the Heartburn side effect as I have been experiencing this and was blaming it on other medication. Having had a camera down the throat examination twice in the last 6 months it would appear my ulcers are getting worse so maybe the Rivaroxaban has something to do with it.  Also interesting to hear about St Thomas Hospital but I do not think that NHS Scotland would recognise that source for information.

    Because I was concerned about the effects of Rivaroxaban I stopped taking it for 5 days against medical advice and found after 2 days had no bleeds, no headaches, earache or heartburn, and felt great. At the end of the 5th day I had cramp in my calf going to my knee, the same as when I had my previous 2 bouts of PE, so I went back to Rivaroxaban and the cramp disappeared. The moral for me is that I need it, but either at a lower dose or another product to reduce side effects.

    David

  • Allexie
    Allexie

    Posted

    Just had to pop back to have a moan as I am sooooo cross!  I still have not got my hands on the Rivaroxaban that was prescribed for me last Friday.  I went to my GP surgery today to collect my prescription.  I checked it when they handed it over and was surprised to find it only contained the 'maintenance dose' of 20 mg per day.  The 'loading dose' of 15mg twice a day was missing.  I pointed out the error which caused a bit of a kerfuffle but eventually they found the form that the registrar at the chest clinic gave me to take to the GP and which detailed the change of meds and dosages.  The 15mg bit had been heavily crossed out.  It was suggested to me that the registrar had changed her mind and made the change in the clinic but as I had read every word on the sheet before I handed it over I knew this was not the case.  So a general practitioner has taken it upon themselves to alter instructions given by a specialist.  This cannot be right surely?  They seem to be falling only slightly short of calling me a liar by saying I am mistaken about the crossing out happening before the form got to the GP surgery.  I know for sure that was not the case as there was a big debate about the need for the loading dose and the registrar went to speak to the consultant who confirmed the need for it.  They are still 'investigating' so I have to stay on Warfarin for the time being.  Sorry for the waffle but I am so stressed and needed to 'share'!!!!!

    Thanks for reading...if you did...

    • tina2222
      tina2222 Allexie

      Posted

      Hi alexie

      Blimey that's a shame , I'm a nurse you could ring the consultants secretary and explain the situation it would speed things up a little

    • -.a-way_forward
      -.a-way_forward Allexie

      Posted

      i really want to learn, research & develop, volunteer- be test subject, work in the 'clottie' field.
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