RA and rhesus disease ...: Well, I don't really... - NRAS

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RA and rhesus disease ...

Rosie_rabbit profile image
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Well, I don't really understand very well all of this auto immune stuff, but I do a bit. My blood group is rhesus negative and after having my first baby I had the obligatory anti d injection to stop my body developing rhesus antibodies. When I fell pregnant with my second and had my first set of bloods I was told I had developed rhesus anti bodies and that I would need to be closely monitored through my pregnancy and that my body might try to attack the baby. This happened with all of my subsequent babies and became worse with each of them the more I was exposed to their blood which is quite common. What isn't common is for the anti d injection, if given correctly, not to work.

Less than 10 years on and I have RA. Now I realise the 2 aren't directly connected but just wondered if it may show a hyper sensitive autoimmune system or perhaps I've really got the wrong end of the stick on how this works. Anyway I just wondered if anyone else who has RA and rhesus pos blood also had this problem when having their children as maybe there is a link. Interesting topic following on from the bee stings and I'd be really interesting on your thoughts. Thanks, Rosie x

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allanah profile image
allanah

Gosh Rosie I hope someone has a PhDs in this! I don't know but as a pure guess only different antibodies react to different antigens, I think, so wouldn't necessarily follow as antibodies to resus would be different to antibodies to RA? But not a clue , hope there are some scientists put there! Xx

Rosie_rabbit profile image
Rosie_rabbit in reply to allanah

Lol Allanah!! Yes I think you're right they do have different antigens and are not directly linked. Just wondered if there might be tendencies to develop this sort of response. I know people have posted before about having RA and having an anaphylactic shock. Perhaps we are all very sensitive little souls and our body's are temples!! Rx

SoapDragon profile image
SoapDragon

Are you sure you are rhesus positive? Anti D is usually only given to rhesus negative mothers x

Rosie_rabbit profile image
Rosie_rabbit in reply to SoapDragon

You are absolutely right soapdragon, I am rhesus negative I'll edit my original thread, thanks for that. Rx

hi I am rhesus neg and have gone through the same thing after having my children I was told I also have a rare blood group and at one time I carried a sos card I am new to ra not responding well to treatment its got very aggressive in a short time form its great to talk and find out more about it all as it difficult to live with.its a good point you have made

Rosie_rabbit profile image
Rosie_rabbit in reply to

Hi Lucinda, it is very interesting and I do wonder if there could be some sort of link. Developing rhesus antibodies I'm told is really quite rare these days. So it would be interesting to know how many women on this site with RA and rhesus neg blood group have had children and if they have or haven't experienced any problems.

How are your children now, I know it was quite a scary time for me having the children with this going on. With my last I had to go up to kings hosp in London every week for a scan. Gladly mine survived it unscathed though they were pretty poorly when they were born. It's good to talk and share these things Rx

hatshepsut profile image
hatshepsut

Hi, I am rhesus hegative too. Food for thought!

Rosie_rabbit profile image
Rosie_rabbit in reply to hatshepsut

It certainly is. Have you had children or any antibody problems?? Rx

hatshepsut profile image
hatshepsut in reply to Rosie_rabbit

Have 3 children, had the injection after births, but no problems. Do however have an autoimmune blood condition, anticardiolipin antibody plus lupus inhibitor. Means I have to have heparin if I fly longhaul, or have an op.

Rosie_rabbit profile image
Rosie_rabbit in reply to hatshepsut

That's really interesting. I also have blood clotting problems, although it's not been put down to an autoimmune problem. I had a pulmonary embolism (blood clot in the lung) after having my gall bladder removed. This meant that through all my pregnancies I had to inject heparin and I also need to be careful about any periods of incapacitation like long haul flights or breaking a limb etc. I think there's some strange coincidences I must say. Thanks for replying Rx

RA

With psoriasis and RA the immunes system, begins to attack and speed up the reproduction of cells. As the body produces to many of them This is why our immune system needs to be suppressed with DMARDS and Biologics . In this way damage is reduced when these medications are taken..Many medications are used too suppress cancer cells at possible higher doses as cancer is a problem that is caused by the production of cancer cells

BOB

in reply to

Hi Bob- am trying really hard to work out how this answers the question originally asked-- can you explain for me please

in reply to

Sorry Sal

oo

I was generally talking about immune system problems associated with RA type problems. I knew someone who was very worried after taking MTX medications before birth. She seemed to have been fortunate, and the child is still ok.

I too am rhesus negative, and it did cause me problems with my pregnancy.

Rosie_rabbit profile image
Rosie_rabbit in reply to

Mmmm the plot thickens ... only 25% of the population has rhesus neg blood group so that's quite a small number of us, and then to experience problems like this is even rarer, so that's a few of us already that have all of this and RA too!!!!

hatshepsut profile image
hatshepsut

My rheumatologist did say when I was diagnosed that there were indicatins that RA and my blood condition were linked, but the fact that I was rh neg never came up. Wonder if there is a link?

Curiouser and curiouser!! M x

Rosie_rabbit profile image
Rosie_rabbit in reply to hatshepsut

Mmmm i see my rheumy of Thursday I might ask him ... I'll let you all know Rx

that is interesting! I have RA and I also have rhesus negative blood and had anti D injections with both pregnancies as started bleeding at 12 wks with second child (although had Anti D after first child) It is interesting - our bodies want to reject the babies we carry as it sees them as a foreign object - and RA makes our bodies attack ourselves again! who is going to do a survey regarding who many of us Mums who have RA also have Rhesus Negative Blood??

Rosie_rabbit profile image
Rosie_rabbit in reply to Elphabafromcornwall

That is a very good question and something I've been thinking all day is something that someone should do. I may get onto it tomorrow thanks for replying Rx

I am rhesus negative also and ra . I have two children and had no problems. Its a long time since mine were born 44yrs and 49

. The only thing I remember was I had to carry a card while pregnant. My ra was diagnosed about ten year ago. I don't remember getting any injections. Maybe they didn't do it then.

My children were perfectly healthy. They both are rhesus neg so I hope there is no connection to ra.

Rosie_rabbit profile image
Rosie_rabbit in reply to

Hi jacksnana, thanks for replying. I don't think the link is necessarily the blood group it's the sensitivity of our immune system and how it responds to things. As both of your babies were rhesus neg too, then there would have been nothing for your body to fight and they would have been perfectly fine. If they had been rhesus pos then your blood may have built up antibodies to this after the birth of your first (it's at birth you may be exposed to your babies blood) and then started to attack subsequent babies. I think they called it blue baby syndrome years ago.

I think it's all really interesting and hoping we get lots of info about this so thank you again for replying. Rx

helixhelix profile image
helixhelix

What an interesting question! I'm rhesus neg too. I've done a bit of googling and seems you are spot on..

To quote "from the study of the blood groups of patients with various articular diseases, Cohen et al. 1 concluded that there was a significant correlation between the absence of the Rh antigen D and rheumatic disease. There also seemed to be a correlation with the absence of antigen N, while no correlation was found with the ABO blood group system. Their series consisted of 99 patients, 31 of whom suffered from rheumatoid arthritis, 31 from rheumatoid spondylitis, 15 from gout, 9 from disseminated lupus erythematosus, 6 from familial Mediterranean fever, and 7 from various other diseases. As the statistical analyses did not demonstrate any significant heterogeneity among the results obtained for the different diseases, the data were pooled"

Which I understand to mean that proportions of actual blood group (ie A, B or O) is the same in RA people as others, but yes we are more likely to be Rh negative. And that same goes for the other similar diseases.

I might carry on looking for info about whether there's similarity in the development of both.

Rosie_rabbit profile image
Rosie_rabbit in reply to helixhelix

Way to go, you are definitely the one on here with the PhD!!! That is amazing, I think, I'm still rereading it to completely understand it. Please let me know how you get on.

I've a bit of time on my hands too right now and really want to find out more and I'll let you know how I get on. I'm also going to ask my consultant about it on Thursday when I see him. Thank you Rx

hatshepsut profile image
hatshepsut in reply to helixhelix

I'd be really interested in further info. I wonder if it might be an avenue to explore further. M x

in reply to helixhelix

Thx Helix, sorry i started my answer yesterday - I have to split up writing my replies when they are long :( ... this is certainly interesting so hopefully there will be more studies done on it. Do you have the link to this study? You have spurred me on to keep looking :)

Rosie_rabbit profile image
Rosie_rabbit in reply to helixhelix

Helix, Tilda and I have been talking a bit at the bottom of this thread, well all thru it actually ... can you have a read and maybe join the team for ideas??

fastball profile image
fastball

i have PsA and Rhues neg blood, but only had one injection after birth of first child dont remember any more after the others and i had total of four..

Chris

Me too have RA and rh neg , had anti d after each pregnancy and miscarriages , spent whole time in hospital carrying my son and daughter due to bleeding probs , don't know what blood groups they are , very interesting though .

in reply to

Can u remember having Anti D after the baby's were born because they only give it once they have tested the baby's group and its pos. If they are neg then there is no need to give it.

Sorry you had so many problems :(

I was specifically asked if I had had miscarriages ....had five before my daughter however not rhesus negative

in reply to

They might have been thinking of Hughes Syndrome perhaps?

flosie profile image
flosie

Hi Rosie

I am also Rhesus neg and had the anti d injection after the birth of my daughter 44yrs ago,I have always put my R A down to hormones as mine showed it self when I started puberty with not being able to open my mouth properly first thing in the morning,but wasn't diagnosed,then it came back again with avengance after my daughter was born. Thankfully now with the advance of the medications that are available to us it is being kept on an even keel. Good luck with your research Flossie x

Rosie_rabbit profile image
Rosie_rabbit in reply to flosie

Thanks Flossie, there do seem to be lots of interesting factors here Rx

Hi I'm not Rhesus negative but I wonder if the fact that so many (relative to the amount of people who are Rhesus neg in the population as a whole) would also be similarly high if you asked about RA showing up during times of fluctuating hormones such as adolescence, post natal and menopausal stages? For example I do remember someone asking a long time ago on here about how many people had Hypothyroidism - and a lot of people came forward indicating that it was disproportionately high compared to the normal population. And then same thing cropped up in relation to menopause too.

What I'm trying to say is that anything that fundamentally alters our immune system makes it more likely that we are susceptible to diseases such as RA, PsA, Lupus etc maybe? So a proportionately larger amount of Rhesus Negative would be more likely to develop RA but the same thing would maybe apply to those with a history of any long term medical condition because these are all potential triggers for dodgy immune responses I'm guessing? Tx

in reply to

Ps sorry for such a waffling comment Rosie but it's well past my bed time. I just wanted to say that I love these kind of questions!

Rosie_rabbit profile image
Rosie_rabbit in reply to

Yes I love these too Tilda and it looks like I've really got people thinking which is great ... Would be good to research further xx

in reply to Rosie_rabbit

Keep going Rosie - research is what I do too (Australian Labradoodles inc!) but then I'm fairly obsessive once I get the bit between my teeth! It drives my family nuts but

keeps me sane (or a little saner I should say!).

This is a really interesting question you've asked too. Seeing as our disease activity is measured in part by blood markers - then blood types and rhesus status should be very relevant as to a diagnosis of RA surely? But then I am just an artist who dumped the sciences at the first opportunity while at school so what would I know?! X

Ps well its not phd material but we can play at amateur sleuthing to our hearts content and you never know - it may turn out to be invaluable research to someone eventually?!

Rosie_rabbit profile image
Rosie_rabbit in reply to

Ha ha you keep going Tilda there's some really interesting information on here, I can hardly keep track of it all. I'm wondering if we can do some sort of poll asking people for simple details like blood group? Rx

in reply to Rosie_rabbit

We'll here's an admission Rosie - I don't even know mine?! I did used to but its long since been forgotten. I was asked the other day because there's a diet that some woman claims has got rid of her brother's Crohn's that is all done by blood group? I may phone the scary receptionist at the surgery and say I need to know for a medical form or something! X

Rosie_rabbit profile image
Rosie_rabbit in reply to

That is a very good point, I bet that a lot of people don't know their blood group. Bet most only know cos they're rh neg and found out when they were pregnant!! X

Rosie_rabbit profile image
Rosie_rabbit in reply to

Tilda I added a bit more to this thread at the end of it that you might want to add to your research, about how bloods don't always show what they should!

These two things both work in different ways. I am not an authority by any means but I worked in the blood bank section of our hospital pathology for a few yrs and this is my interpretation of it - sorry its long but I will try to explain how I see it....

What group we are depends on whether we have that antigen on the red cell or not ie people with the A antigen are classed as 'A' and people, people with the B antigen are classed as 'B' and people who don't have either are classed as 'O'. Also for the basic grouping, people with D are classed as 'positive' and people without are 'negative'.

There are lots of antigens in our systems which make up our blood grouping profile, many more than just the ABO and Rhesus pos/neg but they are the most common ones to cause problems by developing antibodies so that's why we use O negative blood for emergency transfusion if we haven't done a cross-match, its less likely there would be a reaction.

If the mother is Rh neg and the baby is Rh pos and there is a hemorrhage in utero between the two, then the mother's immune system sees the D as foreign and will develop its own Anti-D. The Anti-D gobbles up the D (that came from bub) so it wont hurt the mum but the Anti-D can cross back again over the placenta and go back into the baby's system which would then attack the baby's red cells causing them to hemolyse (break up). This hemolysis produces high quantities of bilirubin (jaundice) which is when bub needs to go under the lights in the nicu. Some babies can also develop anemia or even die if the problem is very severe.

However, when you pre-inject mum with IgG Anti-D, it supresses the making of natural Anti-D and because it is already there to gobble up the baby's D before mum has a chance to produce her own Anti D. That's why every neg mum is given IgG Anti D. Unfortunately in about 1-2% of people it doesn't work and the baby has problems anyway which is why they still periodically check the amount of antibodies in the mother. If the titre (amount of Anti-D) is rising then in most cases it means the baby will be affected when its born.

This immunity is called Allo-immune whereas RA is Auto-immune.

In Rheumatoid Arthritis there is no outside influence, it follows a different path - we dont have 'RA antigens' coming from another source but our bodies for unknown reasons attacks itself. Sometimes in response to the attack, it decides to produce RA factor and Anti-CCP but not everyone has them in enough quantities to detect. They are trying to find the reasons the body attacks itself saying it could be allergen or it could be post viral or even what we eat but really there is too much inconclusive evidence to point the finger at any one thing. This is the case with most auto-immune diseases, we simply dont have all the answers yet.

Yes there could be a link between the two, like some Rhesus neg people might be more prone to developing auto-immune diseases. Now if that were the case then the number patients with auto-immune diseases that are Rh neg should be proportionately a lot higher than those that are Rh pos and Im not sure if that has been proved or even studied. If it has I didnt see it but if anyone has links, it could be very interesting.

helixhelix profile image
helixhelix in reply to

See my comment above...I found one small study that showed that there is correlation between our sorts of auto-immune disease and being Rh negative, and confirming that no correlation with ABO antigens. Now looking for more.

in reply to helixhelix

I replied on the comment above :) Maybe we should ask everyone here what their group is... mine is D positive (but my phenotype is R0r so I am D pos but C and E neg - almost there) ... ;)

Rosie_rabbit profile image
Rosie_rabbit in reply to

Hi netbuddy thanks for your input and for explaining so clearly the issues with rhesus disease. Very helpful having someone on here who works in a blood bank!!

My baby story briefly is baby 1, Edward, born was o pos and I had the anti d injection. Sadly Edward died the day after he was born because of meconium aspiration.

Booked with baby 2 and bloods showed I had developed rhesus antibodies. They phenotyped my husband and he is double positive so all our babies would be positive. Titre levels checked throughout pregnancy. Baby 2 born and slightly jaundiced.

Baby 3 booked, antibody titre level slightly higher, but not much. Recommended delivery at 35 weeks cos of the the rhesus issues and regular checks on titre levels. She was severely jaundiced, anaemic needing a blood transfusion when born even hogue there was no increase in my titre levels through the pregnancy. She's all good now though.

Baby 4 (yes I'm a complete glutton for punishment!!) titre level hadn't raised much since baby 3 but again blood check 2 weekly to check titre levels. From 20 weeks scans every week at kings to check the baby for anaemia. At 34 weeks he showed signs of anaemia and was delivered, again anaemic and jaundiced, needed a blood transfusion. He's fine now too.

Sorry a bit of a ramble but you seem quite interested in all this stuff. I think the most interesting part is that my titre levels were always quite low and yet my last 2 babies had significant rhesus disease. My rheumatoid factor is also only mildly positive and my crp and esr has never been particularly high even when I'm flaring badly.

I think we've certainly got a lot of people thinking and this is all really interesting, even if I feel I haven't quite grasped the slightly more complex sides of it!!! Rx

Rosie_rabbit profile image
Rosie_rabbit in reply to

Netbuddy, Tilda and I have been talking a bit at the bottom of this thread, well all thru it actually ... can you have a read and maybe join the team for ideas??

Gosh you have been through it with your babies Rosie - poor you. This has at least prompted me to find out my blood group tomorrow (if I'm brave enough - one of the receptionists is scary lady!).

My own area of amateur sleuthing is with autoimmunity and eczema/ asthma - because I suffered from eczema and alopecia for most of my childhood and adult life until a few years ago when it all but disappeared - to be replaced by RA. My first pregnancy was spent in and out of hospital because my eczema became so severe that they wanted to keep me as an inpatient on the dermatology ward but I refused. I was fine with the other two although I bled very heavily throughout both. My eldest son now has very severe eczema himself and both his dermatologist and my youngest son's have said that there's research going on at present linking eczema with autoimmune conditions. However I wrote to the Eczema Society and asked them and they didn't seem to know anything about this?

Are you going to start a new thread for people to add their blood groups to perhaps - since this one has become very long (because it's so interesting of course!)? Tx

Rosie_rabbit profile image
Rosie_rabbit in reply to

Thanks Tilda and you sound like you've been through it a bit too.

Yes I definitely think a new thread might be a good idea in the form of some sort of poll. However, I'm a little concerned that the only people that will know their blood groups are those with rhesus negative and we won't necessarily get a true representative group. I'm happy to organise some sort of poll but only if it might be truly representative, I'd welcome any ideas on how to manage this??

You're right this post is getting a little unwieldy I'm going to have another good read through it later.

I'm seeing my consultant tomorrow and I will ask him if he knows of any research being carried out, maybe nras might know too?

Let's stay in touch, I'll be Watson to your Sherlock!!! Rx

No no you are Sherlock to my Watson for this particular case Rosie! It can be the other way round for the exzema one if I ever get sufficiently motivated. You might be right about getting skewed results regarding the blood groups though but surely it's quite a useful thing for people to find out anyway in the event of accidents or needing transfusions etc? However it's not something I've ever been asked to put on a form now I think about it. Hmmmm.

You maybe need to get advice from a real scientific research person? I don't know how you'd fine one of these though. Perhaps Helxhelix and Netbuddy would be better able to advise you on how to go about this?

Rosie_rabbit profile image
Rosie_rabbit in reply to

Of course, we have someone on here working in a blood bank how perfect!! Also the everso resourceful and well informed helix, good thinking Watson

in reply to Rosie_rabbit

:-)

Rosie_rabbit profile image
Rosie_rabbit

Well thanks everyone for all your input. This post has raised an awful lot of interest and I think there's more research etc into this subject needed. So anyone has any ideas on how to progress this, wanting to help with any research or who has any information to share would be fantastic

Thanks Rosie xx

Hi Guys, Ive been doing some reading and I think you would find this site very interesting ...

rhnegativeregistry.com/Join...

Rosie... I am sorry to read about your problems having your children, it must have been a struggle for all of you especially with your first-born when he aspirated his muconium. So Sad. Good to here the others are doing well now. I believe its the amount of Anti-D that crosses the placenta that is the problem so if you have a large Feto-Maternal Hemorrhage or quite a few bleeds, you will allow more antibodies to cross over. So although you had a lowish titre, the amount of Anti-D was enough to effect the babies badly in the same way that someone with a high titre can affect the babies with a smaller FMH. Its also how the baby's body reacts... some will cause a lot of haemolysis and become very anaemic and jaundice, and others will be only slightly sick. There is a lot more to it but far too much for here. I'm just glad your bubs got through.

Tilda... I am very surprised with the reply form the eczema association. I would expect them to know that eczema has been linked in studies to asthma which as you know has an auto-immune component to it. Its no wonder the researchers are seeing if it has other A.I. links too when families like yours are showing it could all be connected.

Btw probably the reason you havent been asked for your group is because they NEVER take a persons word (or even a blood bank card) as proof of group and antibody status. Pathology ALWAYS do their own group on the blood vial for 'cross-match' or 'group and antibody screen' because it only takes 30 secs to do a group and it can be deadly if the information given to them is wrong, especially for Rh neg mothers and babies where you don't have the incompatibility of a cross-match. They might compare it for confirmation especially if you have a rare antibody but that's all.

I'm sure we cant do a professional study as you have to move mountains and jump hoops to comply with regulations to do one so we should leave that to the experts - they are fitter than we are :) I guess what was suggested, we could do a poll. Being an Aussie im not a NRAS member (plus I will be disappearing next week to have another spinal fusion) but someone who is could ask them. Probably just asking if people are rh pos or neg... and since we have a diverse group on here then checking if they have a doctors diagnosis of an auto-immune disease (any would be a link).

I would luv to see some results when I get back on.

in reply to

Thank you for this link, I found it very interesting.

Rosie_rabbit profile image
Rosie_rabbit in reply to

Hi net buddy, sorry I didn't reply to this great post sooner, had a consultant appt yesterday and it left me exhausted.

Yes it was a hard time, but I have 3 beautiful children and I'm really very lucky so I just try to look forward and enjoy every minute before they're all grown up!!

You've come up with some really interesting info, thank you. I had reason to call the nras helpline earlier about a different matter and I've asked them to look at this thread and also to see if there has been any research carried out already, maybe to look at the validity of carrying out some sort of poll. Anyway, I shall await to hear what they say. Keep looking ... news I had at my appt yesterday has somewhat distracted me, but I will come back to it.

Thanks again so much for all your replies. Rx

I hope the consult was of use to you, it sounds like it might not have been what you expected... make sure you look after yourself first, dont worry about this till you feel like doing it. :)

Rosie_rabbit profile image
Rosie_rabbit in reply to

Thank you you're really kind. No the consultation wasn't at all what I expected, I have finally posted on it, now I'm getting my head around it. It's more interesting stuff though. Have a good evening Rx

Rosie I quite agree with Netbuddy - you have enough going on just now so probably best to let it hang in the air as a potentially interesting area to research when you are ready to. Dr Watson's orders!

Netbuddy - thanks - yes I was really surprised at this response from the Eczema Society too? But I'm going to see a dermatologist sometime within the next few months about my hives - which my GP believes are chronic autoimmune urticaria - so I will see whether they are aware of any research. Perhaps it's only in it's infancy but the person from the ES who wrote to me was adamant that any connection between Asthma & Eczema with autoimmune diseases was tenuous. Will let you know what the Dermatologist says.

in reply to

Thats interesting T ... let me know what happens. My son has been hospitalized a few times with A.I. urticaria. He is ANA pos, same as my daughter who has urticaria from lupus but his was not hard to diagnose as most of his lesions lasted much more than 48hrs (abt 17-20 days). I know there is a test for it by injecting the patients own serum into them but I dont know if he had that or not. Even though I have asthma, thankfully neither of them has that.

I thought you might be interested in this paper because I know you have sjorgrens and raynauds too ...

tsim.org.tw/journal/jour21-...

ps... re the paper: I have a tiny thyroid from well advanced Hashimotos Thyroiditis and my daughter has been told to have her thyroid functions repeated because the last lot showed she could also be hypo... sounds like its all linked to me! :)

Rosie_rabbit profile image
Rosie_rabbit in reply to

Hi nb and T, gosh how interesting but you two do have such a lot to cope with.

Nb what you said about your son and hives is interesting. When my eldest daughter was 5 she had what we thought was an anaphylactic shock. Lips mothe eyes blistered and swelled. Took her to the the hosp where she was given steroid and adrenalin and she came home later. For about 6 days she had severe crops of hives all over her body. She had some allergy testing which were clear except for hay fever and bloods and they said her ANA was mildly positive but they didn't seem overly worried about it. They tested again some months later tho and it was still the same. 18 months later she had another bout of hives for a day or 2 and since then she's not had any reoccurrence, she's 10 now.

Isn't it all very weird and way too much to all be a coincidence?? Rx

Gosh you really have been through it NB. My eldest son has severe eczema as I had at his age too - but he's been hospitalised once with blood poisoning from it. His dermatologist was very interested in my RA following years of eczema and said that there was a known connection apparently. I think the autoimmune hives and hypothyroidism have a clearly recognised connection with Lupus and RA. Luckily for me, so far, I appear to have all these things quite mildly with a negative ANA although they don't feel mild when flaring of course!

Asthma must be awful - I had post gestational asthma and that was quite scary enough. Xx

Ps I've just looked your link NB and am very grateful for it. For 18 months I blamed methotrexate for these hives but it became clear that this wasn't the cause when I came off it. I now wonder if the MTX was actually holding it at bay by suppressing my immune system because it has properly flared only since I came off it. I think its the negative ANA that's holding my rheumy back from making a diagnosis of mixed connective tissue disease. But my thyroid antibodies clearly show that I have autoimmune thyroid disease so reading this study makes things fall into place more. Many thanks. Tx

HI guys... anything we can do to widen our knowledge and put the jigsaw together is a plus! I'm glad you got something from it.

Rosie, unless something else makes you suspicious she has an autoimmune problem, you should have your daughter tested again at about 18. I know from working in pathology that sometimes children grow out of being positive for ANA especially at low or moderate titres. If she has another bout you could have her tested for C1 INH (or C1 esterase). My daughters titre was down.

This might be helpful to read for both of you... I have only half read it but it looked interesting and I will read the rest tomorrow.

aacijournal.com/content/7/S...

T I had to look hard to find that one as I read it a while back and thought of it when you posted. I think I agree, the MTX was probably suppressing the response. You mentioned the steroids doing the same thing which could be indicating it to be AI urticaria.

I know you are like me and have a long history so it may pay to write it all down before you go - I always just add to my list as things develop because my memory has a habit of timely forgetting everything when I get to the docs office :(

PS: I thought I should add that being super sleuths in researching things for ourselves has definite advantages but when it all comes down to it, I'd rather have a good doc that isn't afraid of researching things for himself. I guess one way to find if they are putting time into keeping up is to find a new research paper and ask "did you read that article on blah" ..... haha!

shirleyfl40 profile image
shirleyfl40

I have RA and Fibro. I also have RH Negative blood. I also have Scoliosis in my spine and stenosis. I have had surgery to repair a severed Achilles tendon and foot re -construction on the foot opposite the Acl tendon. I am 73 and had been in terrible pain in feet and legs for over 10 years before I was finally diagnosed. I guess either they thought I just had Fibro or as they always comented that I was depressed. Hell yes, anyone that was in pain like I was and I felt like I was going crazy. I had to cry and beg for 5 years before I finally told 2 of my docs that I was going to have to find a drug dealer!, I now go to a pain specalist doc. I now take Methadone. I take 2 10 milligrams per day and never have increased the dose, even though I still have lots of pain. I have been on Methotrexate and Remicade infusion for 10 years. I told by a foundationmy rheumatologist it was time to try a new drug. I have been on Enbrel for 3 months and I use the shot that is preloaded and never had anyone show me.. I just followed the directions. IT HAS NEED HELPED ME MUCH AT ALL. My doc says he wants to give it another month or two. We have had unusally cold and wet winter here in Louisiana USA. Maybe that is why I have been in several flares since switching to Enbrel, btw if you do not have insurance here Enbrel costs $3,000.00 per 4 injections....

Thank goodness I have been helped by a charitable foundation for the time being. THIS IS MY FIRST time posting on this site. Thanks

Rosie_rabbit profile image
Rosie_rabbit in reply to shirleyfl40

Hi Shirley, well I'm really pleased that you've felt able to post on this site. You certainly sound like you've been through it. Like you, here in the uk it has been a really wet winter and I think that has caused lots of us to experience a bad winter with our RA.

I hope you manage to get your meds right and please do continue to post on here, everyone is so welcoming and supportive. It's nice to be able to share experiences with others who know what you're going through.

Take care and I hope that weather picks up for you.

Rx

clairelouised profile image
clairelouised

hi i am also rhesus neg o i have 3 children and had obstetric cholestasis with all 3 during my pregnancy's it was only after having my two little ones that i stared having problems being in pain feeling tired and just aching 6 yrs later ive finally just been diagnosed with rheumatoid arthritis but i have it head to toe im only 31 yrs old and i was also wondering if my obstetric cholestasis had something to do with why i now have the RA because of obsteric after my last child i had to be steroilised as my alt levels hit 400 an i was told it was to dangerous to have anymore children it was traumatising enough going threw that and now the RA has any research been done into this ?

Annupsetfemale profile image
Annupsetfemale

@rosie rabbit. I am African and based in westafrica. I am AB- and have had two TOP's in 2011 and 2012 after which i received rhogam shots. Just recently, In February 2016, I was diagnosed with lupus. I found this forum because like you i am suspecting that suppressing one auto immune reaction ie. The anti-D antibodies may indeed trigger another autoimmune reaction, the lupus or in your case RA. I don't know if you are a researcher but If you are interested in pooling people for a study, i am in. Willing to travel if needed.

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