Malaria tablets

[June9961]

We are hoping to go on holiday to Vietnam and Cambodia at the beginning of May. Has anyone with PBC ever been on malaria tablets? If so what worked for you? My GPs are not sure and I'm still waiting for the consultants office to phone me back. We havent booked anything yet because we wont go if I am not allowed to have the pills.

[Hidden]

Hello June9961.

Now I cannot answer your question due to the fact I've not been abroad but I was thinking, have you checked the contradictions and/or side-effects regarding malaria tablets?

Might be that like I seem to find with a lot of medications they often go on about 'use with caution...' or 'not to be used....' with various conditions, liver being one but then they are prescribed anyway. Antibiotics are one thing that are not good for the liver but they seem to be routinely prescribed in patients with PBC.

Reading info on PBC Foundation GP leaflet and also the binder I did notice that it stated that medications are 'well tolerated' and added if PBC is not in the very advanced stages.

Hopefully someone else contributes to your question as I have in the past read about malaria tablets on here.

[June9961]

Thanks Peridot. I forgot about the Foundations binder. I will take a look. Hope you are keeping well.

[Hidden in reply to June9961]

Hello June9961.

If you haven't the binder to hand, go on the PBC Foundation website and log in as a member and the binder is on there as a pdf. My daughter 'borrowed' the binder I got sent as she wanted to read it. I had read through it when I got it but doubt I would again as I discovered it was online in the very same format.

[GrittyReads]

I would actually contact the PBC F direct, and get info from them asap. I don't remember the folder having info on this (could be wrong) but I'm sure PBC F will have a bank of info-providers and could point you in the right direction. Also, contact some of the drug manufacturers direct??

If you don't mind me asking, who do you use for travel insurance? I don't really have PBC (test +ve for AMAs, but Consultant 'named' PBC in my diagnosis, so I have to declare it to TI companies) but I've found most TI people are difficult about even Europe cover. I do have a bee in my bonnet about this, but as I will need to go to the States for research in the next year, and I'm finding that more and more good companies won't let you opt out of cover for individual conditions, I'm getting increasingly worried/irritated. With my GP we are going to challenge the diagnosis, but all info is good.

I hope you get the malaria tablets sorted and have a great time. Some friends have just returned and had an amazing experience.

[June9961 in reply to GrittyReads]

Thanks GrittyReads. I use the post office travel insurance. They know i have PBC and wont cover me for this but tbh I have been holidaying overseas for all 15 years of being diagnosed. I do suffer from severe fatigue and joint and muscular pain (which sometimes feel better when we are away) but have never fallen ill through PBC. So long as the insurance company is informed they will cover me for everything else. My consultant says the risk is minimal. Hope this helps.

[Hidden in reply to GrittyReads]

Hiya GrittyReads.

If you check out the Liver North website and click on Publications and then scroll down to Spring 2014, the new newsletter that is now online, on the back page there is a current list of insurers who are willing to insure. The list isn't a 100% guarantee as insurance companies chop and change things but it can be pretty up-to-date.

Liver North are apparently putting together their own booklet according to the newsletter of insurance companies who are willing to insure.

As for life insurance of which mine ran out last September (and they refused to re-cover me when I informed them I had PBC after diagnosis), I am currently un-insured. First time ever for me since I was 18 (I am 49). So what I propose to do is take one of those 50+ insurances out when I am 50 next month. I find life insurance so bizarre as a quote I did get months before mine ran out last yr., I was quoted £75 per month premiums of which I cannot afford, a lot different to paying just £10 per month.

I think it doesn't make sense with life insurance due to the fact that an insurance company can pay far more out for building insurance than it would to pay for a basic funeral and given I am currently paying £22.10 per month for my buildings and contents insurance with quite an astronomical cover which was apparently the minimum it just does not add up. But hey, that is life and how daft things really are.

[Hidden in reply to GrittyReads]

Hello again GrittyReads especially for picking my brains....

...I noted that you mentioned you hadn't seen a mention of medications in the PBC Foundation folder and I knew I had seen it somewhere. I had a quick look on the PDF on the Foundation site and found I couldn't see anything and for some reason noticed that the 'page numbers' don't seem to tally with the Index.

I then got out the spare PBC for GP leaflet the Foundation sent me a few of last year and noticed that on the final paragraph of the back of the leaflet under the heading, "Prescribing for patients with PBC" this is what it states:-

"In general, liver function is well preserved until late (cirrhotic stage where evidence of portal hypertension) in its clinical course. This means that most medications may be given in a normal fashion. Because PBC is a cholestatic disorder, sex hormones should not be given without a strong indication. Paracetamol containing medications are not recommended in late disease (certainly not more than 4 grams in any twenty-four hours)."

[GrittyReads]

Thanks for that. I used to be with PO until the PBC (mis-)diagnosis, but since then I've always felt unsure. I've never been able to get beyond the incredibly laidback and young-sounding telephone men (I guess I'm being ageist and sexist?) to talk to an actual medicine person. Maybe I'll give them another try.

Do post on here once you get the malaria tablet info - I'd like to think I'll need it myself again some day, and good luck.

[nomorepies]

June, this really does need to be assessed by your consultant, who should be able to give guidance to your GP.

[flora]

hi im on malaria tablets plaquinel for sjogrens syndrome. they are ok to take with pbc but you will need an eye test before starting them

[June9961]

Thanks Flora. Funnily enough I had an appointment at the Opticians yesterday and apart from needing new glasses and being told my eyes are very dry everything else is ok. My consultant also phoned back and said there was no problem with taking them so Vietnam here I come.

[Hidden in reply to June9961]

Have a great time on your forthcoming holiday June9961. As I do these days, enjoy life whilst you can, that is my philosophy as we never know these days what is round the corner.

[June9961 in reply to Hidden]

I totally agree with you Peridot. Life is for the the living. I have lost so many of my close family in the past two years that I am determined to enjoy myself while I can. Bloods are awful, pains and fatigue are excrutiating just now but my determination is high lol.

[Hidden in reply to June9961]

Thanks for the reply June. My life has been filled with more downs than ups over my adult years. I never took life for granted as my parents had just seen their youngest child start his working life and they had plans for being a couple once more and then suddenly my mother died aged 43. I was married at the time but then 7yrs later my husband died and I was left to raise 2 young children. All before I was 30.

I had been writing to my current husband for over a decade when we finally met up end 2008, got married May 2009 and before we had been married a year I started itching and by the end of 2010 I was diagnosed with PBC. How twisted life can be. I just hope I can get through many more years despite having this damn itch every night and we both make the most of any holidays we manage to have and do certain new things, go new places. I have thought of the phrase for many years, "A life without risk is no life at all" and if you feel you have to go for something, then do so.

[GrittyReads in reply to June9961]

Great news, have a wonderful time.

NB I have soft contact lenses (Acuvue, Oasys) which are amazingly comfy - they seem to suck moisture from the air, better than glasses, and much better than other soft lenses - I trialled several types before jumping for these.

[roseter]

With regards to the travel insurance, you can get it through your bank when you pay monthly for your account. It won't cover you for pbc but that's okay for me.

[GrittyReads in reply to roseter]

Thanks Roseter, I'll try to find out more, but I've got a couple of other conditions I have to declare that I would want to be covered for, so I would need to be convinced before paying monthly for my account, which currently I don't. Since the PBC verdict I've become obsessive about checking TI policies, and so many have hidden catches. Also a friend had to pay thousands because something was deemed related to his non-covered condition, and that made me very wary

[cazzi]

I have mild lupus as well as PBC. I have been taken anti malaria tabs for a while as my medication for Lupus. Plaquenil ( Hydroxychloroquinine sulphate) This is a treatment that has been found to be of benefit to rheumatoid athritis patients as well as lupus . I have had no problems. Both my gastroenterologist and rheumatologist are apparently quite hapy with my medications for both lupus and PBC.

[kristieerhodes]

I take the Plaquenil ( Hydroxychloroquinine sulphate) for Sjogren's. When I started taking it on 2006 my doctor told me what it was originally made for, Maleria prevention. It does not interfere with my Urso nor cause any issues with my PBC.

[June9961]

Thanks to everyone for the advice. Plaquenil is one of the malaria tablets recommended for where we are going. Xx

[chedoty]

I was diagnosed with PBC in 2005. Have been on Urso

since and have done well with normal labs. I travel frequently in developing countries due to my job. Have taken anti maleria medication numerous times with no problem. The medication I take is called Malarone in the U.S. Good luck and happy travels!

[Hotshot]

I took Malaria tablets, two one day a week for seven weeks, I was fine, there are different sorts for different county's, we went to Dom Republic so out tablets you could buy from the chemist there may be stronger ones for your destination. Have a great holiday

[JennerLayne]

I do mission work in Haiti each year and rather than taking Chloroqine which many friends say causes a headache, I typically take a prescription of Doxycycline for one week prior to leaving, all through the course of my trip and for approximately 10 days to 2 weeks upon return. It is a form of antibiotic which could help should you get an infection during your travel, and since I have rosacea, it also helps to clear my skin for about 2 months. I take mine with a little food and try to take it the same time each day. Your holiday sounds lovely and I wish you the best! drugs.com/cdi/doxycycline-h...

[June9961]

Thanks JennerLayne,, the problem I have is i am also allergic to certain antibiotics and penicillin which restricts me somewhat. I have an appointment with my consultant in April,which would be too late if I was to start treatment early. I have made an appointment with my GP so hopefully now i have the info he will prescribe a suitable one to me. Thanks everyone for your replies, you have been most helpful xx