Zika and immunosuppression

[Purpletop]

Hiya, a quick question about travelling to Zika-prone countries.

Have you been to one and if so, did you take any extra precautions about mosquitoes?

Most people associate Zika with pregnant women but it affects the immunosuppressed as well. It can cause Guillain Barre syndrome in people other than pregnant women. And as we are immunosuppressed, I suspect we would be more susceptible.

Just checking if anyone had any experience. Thanks.

[misty14]

Hi Purpletop

I would think its best to steer well clear of Zika prone countries!. Not worth the risk!. I don't have personal experience this is just my own feelings. X

[Purpletop in reply to misty14]

Hey Misty, thanks for this. On the one hand I agree totally but on the other - I'm getting really bored of being scared all the time. If it's not Zika, it's something else. I'm already a recluse with not being able to breathe properly etc, what's left of life for us??

With so much happening to us, no wonder we worry about catching stuff everywhere we go. Grrrr.

[misty14 in reply to Purpletop]

Hi Purpletop

How have you got on getting a POTS diagnosis?. Doesn't sound very good as you've got breathing problems!. Also being in a heightened state of anxiety is not good for this either. Not listening to the news can be helpful as they do focus on the bad things so much!. It's finding a sense of balance, not letting things get to us as much as possible otherwise we will flare!.

TAKE CARE. X

[Purpletop in reply to misty14]

The POTS diagnosis is not confirmed because my blood pressure and heart rate don't fall/increase within the parameters for POTS. The specialist, however, said that I'm somewhere near it, regardless.

But he's sent me to be checked for MCAS (mast cell activation syndrome) and also APS (antiphospholipid syndrome). I've just had the blood taken for the tests, I'll see what they say. Chances are nothing will show up so I'll continue in limbo until the symptoms get bad enough to come up on the blood tests.

How have you been? How low are you with the Prednisolone? I'm down to 1 mg!

[misty14 in reply to Purpletop]

Hi Purpletop

I'm sorry your still in health limbo desperate for an answer in order to be well. Fingers crossed for your bloods, the doctors don't want to give up on you which is good. Well done for getting pred down to 1 mg, such an achievement. Thanks to PMpro's gentler reduction scheme I'm down to 8 mg steroid and find it easier with this. Must get to below 7mg for safety!. Have had to increase Colchicine dose for chest pain as got this fluey cold at the mo. That drug is BRILL, such a shame you couldn't take it. Fingers tightly crossed for your results and being better. Keep us posted. X

[feester]

I went to Cuba which has the Zika virus and had no problems, only thing I had a reaction to was the sun, got a bad rash on my legs. I have MCTD with lung involvement causing pleurisy. I take 150mg immune suppression, 7.5 steroids and 500 mg twice daily anti inflammatory, Cuba is quite low risk for zika and have amazing health service so risk was low, I had an amazing trip and like you didn't want to not go and keep not doing things, hope you have a lovely time. x x

[Purpletop in reply to feester]

Thank you! My husband is now the one who's reluctant to go - he is usually a magnet for mosquitoes, not me. The hotel we were looking to go in St Lucia is spraying every day both outside and inside and my husband hates the idea of being in a mist of toxic insecticide all the time we are there.

I'll see. Thank you.

[Mimsii]

I live in the Caribbean And I was diagnosed with lupus mid last year. I've had both chikungunya and zika virus and luckily no major effects. As far as I can tell the zika virus no longer appears to be prominent in these parts and as such you should be fine. Use a good repellant consistently and avoid the mosquitoes. Resorts are really good at making sure the mosquito population is kept to a minimum. Also the rainy season is coming to an end which means they are breeding less. Of course the pros and cons are personal to you but I hope my response helps in some way...

[1sam]

Hi. Well I guess it depends which country and the season of the year for your travel. In Caribe and Latinamerica mosquitoes are a plague during rain season, but from january to april-may it is fine, they tend to die on cold and dry weather.

I read the news about the Guilliam Barre outbreak in French Polinesia but that is not happening in all the other countries. I think if you travel to Caribe you need to take the standard precautions of wearing repellent for mosquitoes (any pharmacy and convenience store sells them).

I had zika this last October, it was nothing compared to the lupus flare I had until May LOL .... not that I recommend getting infected with zika, but I'm more afraid of bacterial infections than viral.

Anyhow, we miss a lot of life being sick with lupus... should we also forego travelling? Or just do it in a careful way? Best luck!

healthunlocked.com/lupusuk/...