Familial auto immune disease: This may have got through... - NRAS

NRAS

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Familial auto immune disease

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This may have got through twice to yourself and if it does I apologise.

As I said thank you for accepting me and I look forward to getting to know you all. The post I wrote earlier I will repeat in case I did something wrong.

I am currently doing my Masters in Nursing and in particular I am looking at familial auto immune disease. There is no evidence of genetic autoimmune disease but there is strong eveidence of it running in families and I wonders if anyone has found the same. I know my dad had ankylosis game spondylitis, my brother has ra and my daughter has PA and I have RA. I would be interested if anyone would like to share their knowledge and I understand if you choose not to.

I am also not allowed to travel to India due to the meds I am on and wondered if anyone knows of any other country I won’t be able to travel to as I am an avid traveller. I can ask my ra team but just wondered if you knew of any in particular. My husband was sent to India with business and wanted to take me but I was strongly adviced not to go.

Thank you so much for any input and I look forward to getting to know you all

M x

53 Replies

There is clear evidence of auto immune conditions both in close and distant relations.

I have had genome mapping done and there are many associated genes but as yet, not well defined.

I am curious as to why there are so few statistical analysis done on RA. It seems the most promising area of discovery , to me at least.

Hidden
Hidden in reply to Damaged

I think it comes down to two things money and they see different classes of medicine as having a higher priority. Such as breast cancer etc however they are making huge in roads into Ra and hopefully in the next ten years ( I know that sounds a lot but it’s not really in the world of medicine) we will see more information etc re RA.

Thank you for your reply

My mother developed RA in her 30s. I was lucky because I didn’t get it until much later. I still think that it was triggered by a particularly stressful time and if that hadn’t happened I wouldn’t have it at all! What drugs are you on which mean you are unable to travel to India! I wasn’t aware there was any particular problem provided you are able to keep injections cool if you are on a biologic.

Hidden
Hidden in reply to Downtime

Enbril and mxt. To travel to India you have to come off for a few months before. I guess there’s a high risk of infection in some countries. Anyway they won’t let me go unless well prepared etc and it’s not worth it x

Downtime
Downtime in reply to Hidden

Oh I see. What a pity you’ll miss out on the trip but it’s not worth coming off the drugs..

No one else in my family has RD, but several of us are atopic...my daughter has severe asthma and psoriasis, my other daughter hayfever. Before RD , and still now, I was/am sensitive to lots of smellies like perfume, household cleaning products which can make me quite unwell. I also come out on rashes for no known reasons, and have had pityriasis rosea. So something is going on with our immune systems !

Hidden
Hidden in reply to Mmrr

Thanks. There is definitely something going on. It’s crazy and horrible. My daughter had the pityriasis roses when she was 16 then a few months later was diagnosed with psoriatic arthritis.

I have a strong family link, I have uctd, my sister,first cousin and daughter all have hypothyroidism.

Hidden
Hidden in reply to suky6

Thank you it certainly is very prevelant amongst families and I would like to know why. Hope they find a cure one day

crazylady57
crazylady57 in reply to Hidden

Morning all. Don't know if this post is still ongoing but only just read it. My sister had RA, my grandson has Psoriatic arthritis and I have RA. Interestingly enough, they all came out after very stressful occasions.

I would think the problem travelling to India would be the vaccinations you would need. Find out what jabs you can't have....Yellow Fever is usually one.....then when you know where you want to go check what jabs you need & if you can have them. Basically with RA any live vaccine is out.

Hidden
Hidden in reply to AgedCrone

Yep that’s a huge issue. Not worth even considering. Lots of the world I can still see I guess.

AgedCrone
AgedCrone in reply to Hidden

Yes YF is mostly central & west Africa + some parts of South America. I've been to quite a few of them & I would gladly pay never to go again. Most are really not nice. I had YF vaccines over a period of 25 years before I was diagnosed.....my Rheumy isn't worried about that.

You would also need to avoid MMR....in the news lately, Chickenpox Vaccine. (which you are tested for before being prescribed some Dmards) plus. BCG for TB, I'm sure there are probably others.

But I'm sure being a nurse you would make sure which vaccines you can have before the needle comes anywhere near you!

Curious about your comment of "no evidence of genetic disease, but strong evidence of it running in families". How can anything run in families if there is no genetic linkage - even if a very weak one? Or are you suggesting that there could be common environmemtal triggers within families? I had understood that things like the Norfolk Arthritis register and studies on Pima Indians had shown a small genetic link?

We have little family history pre-war, so can only tell you about current family. Neither of my parents, nor my half brothers, have any AI diseases. However my two sisters and I each have a different AI disease.

As for travel....there are a few countries where yellow fever vaccination is mandatory, which are places like Angola that you are unlikely to want to go to. And then countries like UAE where it seems that methotrexate is illegal. But that still leaves most of the world accessible to you.

It all depends on what you want to do, as huge difference between backpacking in rural areas eating from local sources and staying in upmarket urban districts in western style hotels. Is your husband's business likely to take you to very rural districts with poor sanitary conditions and high incidence of TB? After all, there are loads of people with RA in India, including some on this forum, who take biologics and live perfectly well.

So with some pre-planning about drugs, and being sensible about hygiene and travel methods (no overcrowded local buses with people coughing over you), and lots and lots of hand gel you can go most places.

Hidden
Hidden in reply to helixhelix

Things can run in families without a genetic link. So it looks like RA could be hereditary but not genetic, the two are not synonymous. It’s quite complicated but no genetic link has been found as yet to RA etc.

helixhelix
helixhelix in reply to Hidden

Hmmm. Still puzzles me. Sure some things are hereditary without being genetic, like the language I speak, or a love of pickled cabbage (thanks mum!). But RA? Sure the genes have not been completely identified, but to me it seems as if a weak genetic linkage exists. Be interesting to see what you come up with.

Hidden
Hidden in reply to helixhelix

Yes that correct there has been no gene identified that’s why it’s classed as an idiopathic disease however it runs in families eg hereditary. If we could find the gene it would be so much easier to discover why it happens.

Hidden
Hidden in reply to helixhelix

I have been adviced by my ra team not to go whilst on Enbril so I have to take there advice. Advice over the country varies. My brother is in a different part and his team are very very strict. He is not allowed to eat shellfish, blue cheese or pate for example where as my team have said I can but be careful of the source. I can’t eat shellfish anyway so that rules that problem out but the other two I love. I can only go on what my nurse and consultant advice me.

Downtime
Downtime in reply to Hidden

Wow all those restrictions! I can’t remember being told anything like that . Just to try and stay healthy and if you can, keep away from sick infectious people which is hard anyway. At the moment I’ve got a heavy chesty cold courtesy of my son! I must say since on biologic I’ve eaten all those things. I would be careful with unpasteurized cheeses in France maybe but I’m not worried about anything else.

Hidden
Hidden in reply to Downtime

I am the same. I eat it all but they actually visited my brother at his house and were extremely scary about it.

Hidden
Hidden in reply to helixhelix

I should have said their advice and not there. Typo sorry. It’s crazy the difference in advice

helixhelix
helixhelix in reply to Hidden

The variations in advice drives me nuts. Why can't we be treated as adults, so the risks are clearly set out and evidence based, and we can make our own choice about what risks to accept, and which ones we don't want to? A frequent problem is with nurses (sorry!) who tell you that x is a fact, when it it's merely an opinion - like recently somone was told she couldn't take Humira to the US.

The reading I've done says that people on biologics have an increased incidence of 10% of serious infections from listeria and salmonella. And of course some foods are more prone than others. So to me it's my choice whether I wish to take that risk or not.

However, we each have to work with our own medical teams..

Hidden
Hidden in reply to helixhelix

I agree with you 100 % and I agree we should be able to have the choice. My consultant is all pro bloods so if you go in with a swollen joint or joints and in agony but your bloods are fine she says there nothing wrong with you yet my other friends with different consultants are treated because they go on symptoms. Medicine should be exact and not an opinion, totally agree

Hidden
Hidden in reply to Hidden

That drives me mad too, only things that swell are my hands sometimes but less painful, bloods normal. My shoulders so painful this week could barely move arms but no swelling. They always seem to want visible manifestation as marker. It’s not that simple.

Hidden
Hidden in reply to Hidden

Exactly. I want to ask them if they have ever had an auto immune disease. My nurse and the registrar take a very different view, they treat symptoms but my consultant is hell bent on blood alone.

Hidden
Hidden in reply to Hidden

Same here, had couple of v good registrars lately, see, even in same hospital, conflicting advice. agree they shld ask patients, evidence based then not preconceived idea of what it should be. Fatigue’s actually recognised as a symptom now due to patients’ concerns, wasn’t always. Some in mine refer to it just as ‘arthritis’ still, it’s just one symptom 😬 ps sorry rant over, totally digressed from your original post 😀

Hidden
Hidden in reply to Hidden

Not at all, I hate it being called arthritis and I am so glad that tiredness is recognised because that is one of my biggest problems and I know you will agree, it’s not just going to bed and having a sleep, it’s like walking in quick sand all the time. X

Hisue
Hisue in reply to Hidden

Uncles with AS, gran with RA.

Yes, the fatigue is awful & the conflicting RA advice maddening- right down to whether to take folic acid on mtx day or not.

I have only had 1 RA dr who did both a thorough clinical exam w/DAS & bldwork & he got disgusted with computer requirements by gov & retired. The young drs just looked at my hands; (come on)& type & send electronic Rxs. Out in 10 min.

In the US it is still RA, not RD. We are bombarded constantly w/drug ads on TV, internet, magazines. The ads do not tell the price & always say to ask your doctor about this new medical miracle! POTUS tried to pass a law requiring big pharma to include prices in the ads,

but was overruled. Biologics retail at $5000/$10,000/mth.

KittyJ
KittyJ in reply to Hisue

Hisue this post is a year old and the poster is no longer on the site so they can’t respond.

Downtime
Downtime in reply to Hidden

It’s amazing the differences in the rheumatology depts. I’m seronegative so nothing has ever shown in the bloods. No swelling either but he was happy to put me on Humira after 3 years of Mxt failed to control pain and fatigue.

Hidden
Hidden in reply to Downtime

Isn’t it? Drives me nuts. From what I read on here seronegative sounds just as bad. Hope it’s working x

Hello. Welcome. I'm new on here too. I have RA, my sister had RA and my grandson has the skin complaint arthritis. Can't think of the name of it now. MTX didn't agree with him. He's on Humira now and it's been life changing for him. Hope you stay well

Hidden
Hidden in reply to Feduptotheeyeballs57

The skin complaint one is called psoriatic arthritis and my daughter has that too. Thanks so much for your reply. Much appreciated

Hi. My daughter and neice have unidentified AI. They were diagnosed about 10 years before me with RD

Hidden
Hidden in reply to Ruth12345

Thanks so much for your reply

Hidden
Hidden

My gran also had RA (like me) but unsure about other relatives.

Hidden
Hidden in reply to Hidden

Thanks so much for info.

marie66
marie66 in reply to Hidden

Me too! My granny and me! M x

Hidden
Hidden in reply to marie66

Thanks so much x

My Mum had Antiphospholipid Syndrome, I have PsA without psoriasis ( diagnosed after more than 20 years of painful joints and back and neck problems), I had Pityriasis Rosea when I was 18 and have Hashimoto’s and also Adrenal Insufficiency. My middle son has severe psoriasis, my youngest son has asthma and hay fever and has allergies to wheat, grass and tree pollen.

Clemmie

Hello Mount

I am new to the group so this is my first post.

On the subject of travelling I have been on methotrexate for 15+.years and I travelled to India last year, no mention of stopping methotrexate was mentioned by my rheumatologist I had whichever inoculations I needed and I was fine.

Hidden
Hidden in reply to Joolsg61

I could have gone if I was just on methotrexate butnits because I’m on it and Enbril x

Joolsg61
Joolsg61 in reply to Hidden

I’m actually on a few different NSAIDs but none apparently that would stop me travelling, such a shame you couldn’t go it’s wonderful. Maybe one day eh x

Hidden
Hidden in reply to Joolsg61

Yeah NSAIDs won’t make a difference to travel but the biologics do and that why I can’t go. My immunity is compramised and the injections you get, some of them are live so I would have to come off the Enbril etc never mind there are plenty of other places to visit xx

My mother has RA, as did her aunt, and I have RA. It looks like I have a second auto immune but have not been diagnosed as of yet (MS and Lupus are the two that are narrowed down too but I believe MS is also an auto immune?).

Hidden
Hidden in reply to cheshcat

MS is auto immune. Thanks so much for your input

Hidden
Hidden

Aw what a shame you missed India; all I know is not anywhere that requires live vaccines: must be a list somewhere.

I’m going to throw a spanner in works: there is no-one in my family with RD or other auto immune disease, just me n I’m pretty good on family history so that goes way back, go figure eh? 😀

Hidden
Hidden in reply to Hidden

No spanner in the works at all 😀 the more information the better thank you so much x

HappykindaGal
HappykindaGal in reply to Hidden

The only live vaccine is yellow fever and it's not required for India HepA and typhoid for India. One of my clients is the Vaccination Group 😀

Hidden
Hidden in reply to HappykindaGal

Yep but I would have to come off my Enbril xx

HappykindaGal
HappykindaGal in reply to Hidden

I probably wouldn't go without those vaccs. Such a shame

Just a thought, typhoid is available in tablet form that's innactive.

One of the best things about this place is the loss of isolation and feeling so alone in my struggles.

Hearing about you all allows me to connect my lifelong health probs with ra!

After neck, back, elbow and gut surgeries and constant pain and depression, it all adds up. Even the fibromyalgia.

I’m really grateful!!!!

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