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Author Topic: Someone from UK???  (Read 2165 times)

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Offline la-hir

  • Member
  • Posts: 35
Someone from UK???
« on: May 16, 2014, 06:07:51 PM »
Hi everyone..

I have been diagnosed in feb-14

It was shock,but it is smoothing now...

Well my health-
February - VL 30.000 CD4 414
March- VL 86.000 CD4 367
April - VL 60.000 CD4 414
May - VL 56.000  CD4 388

I get very paranoid - I have some thrush on my feet and I can't get red of it almost 3 weeks with medication over counter...
my GP prescribed for me some better medication last week ... it is get better but very slowly...very slowly.
also I have some kind of eye infection... again ATB prescribed from GP dosnt work, so I have been in eye hospital and they say ,that it is not infection :( and they send me home with dry eye :( I have very watery and red eyes...
Obviously I get paranoid ,that it is everything related to HIV my dr say is not,because I am runner and did run last London marathon with my best time ever... She say if I am ill from HIV I wouldn't be able run.

Also I have some concern about my HIV doctor.
She talk to me about treatment -

I discussed with her my treatment options and I am a bit confuse.

I read on several web-sides that at this time is for first time treatment mostly recommended single-pill regime as Complera
(Eviplera) ,Atripla or Tivicay in combination or Stribild.

Well because of my depression history my DR. didn't recommended to me Atripla or Complera (Eviplera)

However she give me option... try Complera (???) and see how I get on...
or Viramune with Kivexa or Truvada ...

Well I read horror story in all survey abut nevirapine as Rash (which can be fatal) or serious Liver damage.

In one HIV discussion some physician reply to me,that he not understand why my DR would go that way??? This combination is not recommended as starting treatment.

Well, I did ask my DR about Tivicay (which I am most comfortable to take) and she just put her eyes up and say,that is very expensive and she need to have clinical reason to prescribe that to me. (Apparently she don't have it)
It took me few minutes found out on-line that Tivicay is cost exactly same as Eviplera (????)
Also Stribild is pay in all other countries from public health insurance and is usually prescribe to peoples... (spain,germany,italy,austria,czech,poland,france)
Why NHS dosnt automatically not cover this???

I sad I wouldn't even mind to pay something towards my prescriptions and she say,that it will bankrupt me.

Anyway by 2016 Tivicay should be leading medication in UK>>>>>

My question is.....

How can I get in UK Tivicay?
Should I change clinic???
Is it someone from UK in this forum??

Thank you guys! xx

Offline robsurmer

  • Member
  • Posts: 9
Re: Someone from UK???
« Reply #1 on: May 18, 2014, 12:05:06 PM »
First of all where are you in the UK? From your post I am assuming that English is not your mother tongue and wonder if you are managing to communicate properly with your doctors. Price should not be the main criteria for whatever treatment they put you on at any clinic. If you are anywhere need the major cities such as London, Birmingham or Manchester with sizeable HIV communities you could seek help there. If your particular clinic is not providing the treatment you think you need then you need to go elsewhere. Your statement about Nevirapine is not the case with everyone by any means as I have many friends who have taken it for years without problems. You should in my opinion have a blood test to show how resistant your particular form of the virus is and have a combination compiled from that information. Do not follow what seems to be what everyone else is taking on these forums- it may not suit your particular virus. as a rule if you can control the virus without Protease Inhibitors it is worth going down that road first as they cause major problems even though they are very effective drugs. Above all do not accept being DETECTABLE after 4 months as this should have been dealt with immediately and not left to a bizarre guessing game. You deserve and should expect better treatment from the NHS and if you are recommended to try Complera and see how you go- what is that advice based on?

Offline robsurmer

  • Member
  • Posts: 9
Re: Someone from UK???
« Reply #2 on: May 18, 2014, 12:25:10 PM »
P.S. Forgot to write that Tivicay is in the process of being approved for NHS funding it is not about how expensive it is -that is the system in the NHS -it has to go through an approval process like all drugs and it doesn't matter if it is the same price as another drug or not. Most HIV drugs are very expensive but decisions should not be made on the cost of each drug even if they sometimes are in certain clinics. Your virus should be made undetectable as soon as possible as your CD4 count is very low and you are in danger of opportunistic infections way more dangerous than the skin problems you have encountered this far. Stop shopping around for the best deal and get yourself UNDETECTABLE with whatever is available now to suit your virus following a resistance test. You can switch to Tivicay when it is approved sometime between now and July according to the NHS. All drugs have side effects and you will have them with whatever you take, like all of us you will just have to get used to that and hope you hit upon a drug or drugs that suit you with the least amount of side effects that don't impact too much on your life.

Offline Theyer

  • Member
  • Posts: 2,695
  • Current ambition. Walk the Dog .
Re: Someone from UK???
« Reply #3 on: May 24, 2014, 06:13:57 PM »

The thrush problem as a Marathon runner is not so surprising and is not qualifying as a OI , a HIV related problem , if the thrush was not just on your feet but through out your system feet , mouth, throat windpipe that would be differant.

From your post the Doctor is prescribing to you but not the drug you want for the reasons rob gave you , she cannot as it has not gone through NICE the clinical board that has to evaluate all drugs used by the NHS.

So its your choice to wait until your favour drug is available or take the perfectly good drugs on offer to you now.

A point on bad reactions. When evaluating side effects its worth finding out exactly what they mean. Is it 1 in a 1000 /  10000/ 100000 1m 5m. The Drug company will list it because it does not want to be sued .

As far as I can understand from what you have posted you have been offered perfectly good drugs but not the one you want .As there is no proof you are unable to take nothing but Ticivay the Doctor cannot get the money to pay for it until NICE agrees it . So its up to you to judge , My own feeling is to start meds as soon as pos , I would also be interested in where you are receiving treatment . You can request the use off a translator if this would help clarify the points the Doctor is making . No cost.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline la-hir

  • Member
  • Posts: 35
Re: Someone from UK???
« Reply #4 on: May 25, 2014, 07:40:51 AM »
Hi all,

thank you for advice and help here.  ;)

Feel better. Theyer I am treated in London small clinic.
My dr. is very nice and I like her a lot!
Last week we decide to start medication because my CD4 are up and down (she say is because of running and athletes tense to have lower CD4 anyway)  FEB414,MAR367,APR414,MAY386 even through VL going down from 80K to 50K (is not really different)
Well main reason is my husbands HIV - stat
Commission agree to put my on Stribild and I am glad.
Because is really small clinic  :P I'll be first patient with this drug ... they need to older it for me :)
It is already 10 days and is still not arrive... It make me bit frustrate. How they will supply me later???
We hope for next Tuesday I'll be able start treatment.
Anyway all kidney function are fine so fare.
Is it Stribild good choice??

Theyer- am not English,however my English is good!!! I don't need translator! My husband is American!!  :P :o ;D ;)

Lots of love!! L.


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