(IRIS) Immune reconstitution inflammatory syndrome.

[yperoxos]

How much of a problem is Immune reconstitution inflammatory syndrome for someone like me who is starting treatment (tomorrow) with a cd4 below 200 and vl around 100000? Please share your experiences. What to expect?

[Danoherbaculture]

hello. I had IRIS.

My initial thoughts are that yes starting the medication is big thing. Everyone reacts differently but a lot of people don't have any side effects. Try focus on the mundane things like cook a meal you like, have friend over, play some music. I felt stoned the first time I took my two pills, but if im honest i had build it up as a huge issue, waiting for things to go wrong with me. Basically don't worry yourself into getting ill.

As For IRIS, I would like to know more. I recently went on some training with a community organisation called UKCAB. A consultant spoke to us so I asked about IRIS. I thought it was the effect of the the body which had been fighting the HIV suddenly having no HIV to fight as the meds kicked it., so in an autoimmune way it turned on itself. The Consultant said that it was more an issue of the inflammatory effects of HIV.

A sign for me was red dots on my shins and this was ITP - low platelets. Im sure there are several other things that can go wrong. When you start medicines you are under the care of the clinic and they will want to see you after 1 month, 3 months and perhaps in between. If you have any side effects, you need to talk to them. Ask which is the best way of reporting issues you may have. I had an email of the nurse. IT wasnt instant that IRIS took place it took 2 weeks for the red dots and then another 6weeks before they were concerned.

It may be wise to not plan too many important work and life things in a these first few months. You have to deal with everything and if recently diagnosed, it takes a while.

All the best dude.

[yperoxos in reply to Danoherbaculture]

Thank you so much my friend, you were very informative! I doubt I could call anyone home or meet a friend anytime soon though. I believe my immune system is weak for taking any risks. I don't even go to the supermarket anymore...and I miss my gym a lot

[pauldecle Partner ForumLink in reply to yperoxos]

Working up to going back to the Gym is something that would do you the world of good.

Exercise has been proven in many clinical trials to be a major factor in improving outcomes for people living with HIV.

It is also good for us all to have goals that we would like to achieve.

One of mine is to take up Boxing. My husband is in the middle of his last set of exams to become a barrister (I'm sure it is just for the wig)

All the best,

Paul.

[yperoxos in reply to pauldecle]

Thank you Paul. I didn't have the time to talk (extensively) with a doctor yet. I was only given the drugs today, most probably next week I'll be able to learn more but I have the feeling that gym is something I should do with maybe more than 200 cd4s...(?)

[Danoherbaculture]

do what you feel write. I loved swimming and felt not up to it for almost two years. It was motivation and energy but also a wallowing in my problems. I think its really important to hunker up and hibernate a little, giving yourself time and space to come to terms with things. But really, there is no reason why cd4 of under 200 means you cant do things. Anyway, who says you have to do much at the gym? just turning up and having a shower is a start? all the best mate. Write down how you feel and look at in a year, who will have moved on so much by next year, promise.