Hiv medication

Hello. I wanted to say hello to everyone who has experienced ITP. I got it after starting Hiv medication and platelets went down to 1. I was fine, the haematologist said I would be fine as there are other ways to stop bleeding. I did have a lot of anxiety waiting 2 weeks to see the consultant. Still not 'normal' with platelets at 65 after a year but slowly improving wih time. Had some bruising and lots of steroids initially, thankfully I'm off them now. If I can help I'm happy to. X dano

10 Replies

  • To be fair, I was told it was the body continuing to fight the HIV even though the medication worked super quick and suppressed the HIV. So don't mean to put anyone off taking medication. Its far better know you are undetectable - which means the virus is kept in check.

  • Hi Dano,

    Hello to you too. In many ways I'm lucky as I only have ITP, many people have another condition alongside, that's either preceded ITP or they've developed it since. I've recently started Romiplostin, as the steroids won't keep my platelets up and the Mycophenolate I was given following them didn't work. I was diagnosed in May and the lowest count I've had on the days tested is 13, so high compared to yours. It is great to be off the steroids ( I took them from May to January in the end) and I'm still feeling their effects.

    Good luck!


  • Thanks for the message Sandra. It s a bit odd isn't it knowing one little bit of you isn't working right. I hope you get sorted out and if it's any help the attitude of the haematology consultant put me totally at ease saying even with a platelet of 1 there are still other ways the body keeps it all in check.



  • 2/10/2016

    Dear Dano:

    I'd be interested in getting feedback from you based on your experience. I have been coping with platelets at 15 - 50 for 4 yrs now. I have taken no meds to address it intentionally, because I am taking lifestyle, diet, and alternative therapies. I am feeling fine, with virtually no symptoms, but could benefit from what you have learned.

    Warm Regards,


  • Hi Kevin

    It is also interesting for me to hear your experinces. I was told under 20 is a danger and worthy of steroids. I was also told that even a platelet count of 1 is not overly dangerous for some as we have other ways of coping with blood clotting.

    So You are in a similar position to me. I take nothing and am about 65 now. Slowly rising but maybe plateaued now. I take good quality omega 3 and vit c for general health and also to combat inflammation which I think is the problem behind the auto immune ITP. I am a medical herbalist but decided not to go overboard and just try and live well. I know I could do more but dont like the idea of getting too fanatical.

    Good luck and keep in touch


  • I believe we are frightened into western treatments. Look up nocebol effect.

    I have been hiv pos for 40 years and do not take western meds. ...only alternatives.



  • Interesting . The opposite of the placebo. I cant think of many people that are happy to take pharmaceuticals. If you have been not on hiv medication for 40 years I reckon you're not gonna want to start any time soon. Would I be right in thinking you haven't been on deaths door with illnesses associated with AIDS? It may be a pharma conceit but these days lots of people are taking HIV medicines without side effects so common in earlier years. Its almost like most patients newly diagnosed know there is medication and just take it. New guidelines are suggesting to start medication whatever your CD4 count. All the best Kevin, It would be interesting to hear more from you. I will never forget that a lot of people died/ are dying. xxx

  • I have not taken any meds regularly in 30 years. 40 yrs was a typo.

    Not even over the counter meds

    I took hiv meds about 12 - 15 years ago, but for about 9 months....hated it and how it made me feel

    I never say never but have no immediate plans to get on meds

    Nocebol Effect is a proven theory that states if a doctor gives you a negative progmosis and if you believe it, it will manifest biologically

    I don't accept eminent health breakdown with HIV....Never did. The state of mind has an incredible effect, if on meds are not. I am on none and take no immunizations. I am rately sick.

    But I do many things, as directed by my own independent research, Spiritual practice, hired nutritionists, naturopaths, chinese doctors, yoga, juicing, nature, prayer/meditation, volunteerism, and creative expression. I take a few supplements.

    My approach is challenging but works well for me, without toxicity or side effects. I am not an 'Grade A HIV Student' according to viral load or cd4 labs, but amazingly my numbers have remained about the same for the past 15 yrs, and I do not develop opportunistic illnesses. And most of all, I feel 100%.

    I am shunned by western doctors, others with HIV, and HIV agencies and groups but keep on trucking. Thier loss, not mine.

    No one can explain to me why I am vibrant, active, and health, instead of dead, without ARVs for so long.

    My philosophy conflicts with taking ITP and HIV meds. I avoid toxicity. They will resolve issues initially, but will screw up your liver, bones, digestive biology, mind, and DNA in the end.

    Most people I know who have been on HIV meds as long as I have not, are on many other meds, often geriatric-type meds. Also they have hearing aids, require eye surgery, hip replacement, canes, and are heavily on psych meds. The virus hides in the brain among other places in the body.

    I am not judgemental to others who take ARV meds. We must all make the choices in which we believe. I respect that.

    Besides, most things I follow are also complimentary to HIV meds too. ....especially not viewing any illness as 'a big monster', therefore it never becomes one. If allowed, our therapy approaches can coexist.



    Ps. Forgive any typos. ....done in a rush

  • Kevin, I love youre attitude and may you continue to encourage folk. From my recent studies and chats with other folk who have been living a long time with HIV there are no 'correct' ways of doing anything and although I think HIV meds are really on the way to giving us a boring chronic illness without much to talk about there are plenty of people that can cope with the virus on their own and be undetectable. My grump is with the millions who are dying because of pharmaceutical greed. Saw the film 'Fire in the Blood' the other day and still angry. Apparently in parts of America you are lucky to survive 5 years with HIV as poorer demographics can't gets meds, housing, food etc and that is America!

  • Just wanted to share that my platelets are now 91. Very pleased as they had been plateauing at around 70 for a year. Shows there is hope. xxx

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