Methotrexate and psoriatic arthritis.

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Melanie17
Melanie17 Member Posts: 67
edited 27. Jan 2016, 08:15 in Living with Arthritis archive
Hi there.Would anybody know about the trial which ran at Leeds University Hospital in 2012 that concluded that methotrexate was likely ineffective for psoriatic arthritis?I have been prescribed Methotrexate for psoriatic arthritis,and in the light of the above study,would like to know if this drug has been effective amongst forumites for psoriatic arthritis?I am an overly analytical person who has just received a prescription for Methotrexate and,as I doubt my diagnosis,really am not sure about taking it.Reason-if a trial has concluded that it doesn't work for Psa,is it not the case that we are just being given it at first,as other more drugs such as biologics(anti-TNF),are more costly?Did it work for you,please?
Many thanks
Melanie

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Meth is used for many kinds of auto-immune arthritis (and other conditions) in varying quantities. It is one of the many meds that suppresses the immune system thus leading to a reduction in disease activity. That is its function - it will not stop the disease in its tracks but it can slow its progression and that is the important part. I'm sure you know from your research that PsA affects joints in a different way to RA or AS etc. but it is about suppressing the over-active immune system, to stop our bodies attacking themselves, that meth and its cohorts do. Without them the disease has free-rein - I prefer to rein mine in.

    I think there is some discrepancy amongst patients in their expectations of what one or another med will achieve. Some might say that something hasn't worked because it made little change to their symptoms - I felt that about infliximab (back in my innocent days!) but I now appreciate that it was working, just not as well as I wanted. I understand that my current triple therapy (including injected meth) is working because my blood results are very good - that is the only measure I have because the damage is done and cannot be undone. I also rarely have bouts of P thanks to the sulph and meth. I never read about others' experiences (apart from on here) for two reasons: their experiences are not mine, I know nothing of their attitudes or character, and I do not want to prejudice myself against something that might be of help to me.

    I had three months off everything in 2007 - never again. I was in horrendous pain, stuck in bed etc. so that gave me a proper taste of life without my meds. For me they are about reducing disease activity, slowing joint damage and adding to the quality of life but having been reliant on meds since childhood I guess it's not surprising that I feel this way. I could extend myself the 'luxury' of choosing whether to take them or not but I know I have too much to lose, having already lost a fair bit when I went for five years without diagnosis let alone meds. You are in a very different position, however, these are your early days and, given that you like to analyse and question, it must be harder to accept that you may be in a club that no-one wants to join. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I've checked up on the research you mentioned. It was a very small survey of 221 patients, partly funded by ARUK, which concluded 'We should not forget the thousands of patients that have experienced the benefits of methotrexate. Due to the length of the trial, the numbers involved and the change in the way that methotrexate is prescribed, we feel that more research needs to be done before we advise people to stop taking methotrexate.' http://tinyurl.com/zcgoxgf

    As I recall, you queried your diagnosis of PsA and felt it was given mainly because you were sero-negative. It must be quite daunting to suddenly come to autoimmune arthritis from a formerly healthy position but the sad fact is that we all have overactive immune systems which require suppression. It's true that there are slight variations in which meds work best for which type of arthritis but, believe me, meds v no meds is a no-brainer.

    Whether or not yours is PsA, meth might not be the med that works best for you but, as you were doubtful about the diagnosis of PsA, surely that's all the more reason to 'suck it and see'. It might be that many on DMARDS would be better on anti-tnfs but to put everyone on these, without trying DMARDS first would surely amount to misuse of scarce NHS money as the older DMARDS are literally a fraction of the cost of anti-tnfs but, as they've been in use longer, their potential side effects are much better known, understood and dealt with.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • pilgrimchris
    pilgrimchris Member Posts: 27
    edited 30. Nov -1, 00:00
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    I'm recently diagnosed with PsA (Aug 15). I was put on Sulfasalazine which made me feel terrible (could hardly get out of bed) so I stopped this after 6 weeks. I'm now 6 weeks into Methotrexate and so far am feeling no benefit. Had a blood test late last week and apparently there were problems with my liver so I was told not to take my normal weekly dose of meth on sunday. Am now due a second blood test tomorrow but if its calmed down then i'm pretty sure they want me to continue the meth but at a higher dose (25mg compared to the 15mg i've been taking to date).
    I don't feel its working but from what i've read online i understand you have to try two DMARD's before the NHS will try you on biologics. I've also read a number of stories from other patients where the DMARD's don't really help but the biologics make a massive difference. I maybe wrong but i do agree with you that it feels like you have to spend a lot of time on less efficacious treatments before you get the chance on more effective drugs. And this is time in which my pain, fatigue etc is getting worse and I'm increasingly struggling to get by a work and home.
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
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    Hi Pilgrimchris.Your post is really interesting and I guess that we are in a similar position in that our diagnoses of PsA are recent(mine was on 18 Nov 15).It would appear that those recently diagnosed are in a miserable position-having to take DMARDS,in a trial and error fashion,with a possibility that one will work.This seems to be the same for everyone.Dreamdaisy and Stickywicket made some very relevant comments,and I do accept and understand that we all have to try 2 DMARDS first but it's not a nice process,especially when the suffering goes on.A friend of mine with RA was put on anti-TNF,Humira,which was being trialled at Cannock Hospital under Dr Sheeran.It has changed her life.She can do everything again-ride a bike,play golf.And I do agree that what works for one may not work for another BUT.....I would hope that you would be advised to stop Meth completely if it has altered your liver function.I have started Meth but I have read(I read far too much)that there is quite a large school of thought suggesting it to be ineffective for PSa.Psa is a seronegative form of inflammatory arthritis.RA is a seropositive form.I am sorry that you are so ill-I myself have changed from being a really active person(used to play county tennis)to somebody who stays in her pyjamas all day,whenever possible,because I cannot easily dress myself.
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
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    Just wanted to pass on info which may be useful.If you live in the West Midlands you may consider having a look at the rheumatology department of Cannock Hospital under the auspices of Dr Sheeran.I cannot make a recommendation as I am not one of his patients but I have heard that he is a complete pioneer of biologics which he has trialled with amazing results.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    And there goes another little dagger into my heart: humira is doing what it is rumoured to do but as usual not for me! :lol: From my time on here I can count on the fingers of one hand those who return to 'normal' life thanks to an anti TNF (or in the case of one person, 5mgs of meth per week).

    Some of us have to try, try and sometimes try again before we find the one or combination of meds that helps. For a very few they find the 'silver bullet' immediately and I hope that happens for you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I understand that you and pilgrimchris are fairly new to the wonderfully weird world of arthritis so please forgive me if I'm teaching my grandmother to suck eggs here. It's just that you both seem to be under the impression that DMARDS are always a process of trial and error with unpleasant side effects whereas anti-tnfs work without side effects. It just isn't so.
    In that respect they're both the same except – insofar as I understand from my time on the forum – anti-tnf problems are more likely to be more serious and require permanent withdrawal of the drug.

    I'm delighted that my combo of meth and hydroxy has kept my RA in check for many years, partly because I know there are other meds about if they do fail. I don't want to alarm anyone but we have had the occasional person on here who has run the gamut of anti-tnfs (sometimes they work but only for a year or two). I would personally be in no rush to embrace them.

    Liver problems, both with DMARDS and anti-tnfs do happen. Hence the assiduous blood tests. Sometimes it's a blip and the meds can be resumed. Sometimes it's time to move on.

    The world of autoimmune arthritis can be a scary one, both in the disease(s) and the meds. There is no quick fix. Indeed, there is no slow fix either :roll: though obviously a forum such as this is imbalanced as it is more likely to attract the worried and those who are having difficulties. The aim of all the meds is to dampen down our overactive immune systems in order to hold the disease back as much as possible with the fewest, and least serious, side effects possible. That means starting with DMARDS. Why take a sledgehammer to crack a nut if you don't need to?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Biologics have been around for around ten years, if not a little longer, the pioneering days are long gone. My hospital will now put someone onto them if they fail after six months or so on DMARDs, and gleefully tell me how successful they are. I am on my third and final one because I have exhausted my funding. When the humira/meth combo stop controlling matters (and they will) then that's it. I've had time without meds before so at least I have had some experience of what's coming.

    All drugs come with a comprehensive list of possible side-effects, and they all read pretty much the same. I rarely have them (I always assume I won't but I've been dancing to the docs' various tunes for 44 years) - one that rocked up was the hairy chest, thighs and backs of hands thanks to cyclosporine - most attractive! :lol: What matters is the quality of life we can achieve now and if the meds help that improve then that's the important thing.

    This must be truly shocking for you, the best thing I can say about my life is that I've never known good health thanks to auto-immune troubles since birth. If you have then it's truly a curse when illness strikes because you have nothing to prepare you for the fact that things are no longer as you want them to be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
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    Dreamdaisy thank you for your insightful comments.I am getting a far better overall understanding,or so I feel.Maybe I'm finding it difficult to acknowledge that this disease is hopefully manageable,but also incurable.The health issues I have had in the past have repaired and I have gladly made a full recovery.The concept of arthritis is very different.I am now beginning to think that I am lucky to have started with PsA at 61 because it really could have started many years before,as it has for many other forumites.Thank you for explaining what really happens with DMARDS and biologics-I now think that my dear friend who 'has her life back' due to Humira,is likely very lucky.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Melanie17 wrote:
    Maybe I'm finding it difficult to acknowledge that this disease is hopefully manageable,but also incurable.

    I think that's a good way of looking at it. Arthritis of any kind is in no way a 'glamorous' disease and probably doesn't attract the funding of, say, breast cancer. (I can say that because I've had that too :roll: ) I was told, around 50 years ago, that a cure for RA was 'just around the corner'. Yeah. Right :wink:

    However, in those 50 years they've learned many things. DMARDS do hold back the progress and prevent the deformities that I got. Anti tnfs came later and probably work better but, precisely because they came later, less is known about their long term side effects. Also, they now know that autoimmune arthritis is best treated aggressively asap, which is why, on the forum, we try to convince newbies that they should go for these treatments with the potentially nasty side effects that they read of because the effects of the untreated disease can be every bit as bad if not worse.

    I think your friend was lucky. Some people seem to get worse very quickly whatever they take. Others get worse more slowly whatever they take. Most are somewhere in between but we can tip the scales in our favour by the meds and our lifestyle choices. https://www.arthritiscare.org.uk/managing-arthritis/diet-and-exercise
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    You're more than welcome, this is what the forum is about. It's a difficult concept to understand, to date when you have been poorly you've gone to the GP, maybe had some pills to take and have recovered your health. Now you're skirting around the edges of the world where, despite taking the pills, recovery is not truly possible because there is no cure; it is a matter of management, adjusting, learning to really listen to your body. It's easy for me because I've had years of practice but even so my arthritis was left field - I was expecting diabetes thanks to years of inhaled steroids to control my asthma - I guess there's still time for that to roll up but so far, so good. When I began my asthma inhalers didn't exist - they literally saved my life when I was 12 but there are times when I query if that was such a good thing. It's costing my health authority thousands of pounds per annum to keep me tottering around, managing to do less and less thanks to increasing pain and increasingly limited physical abilities but - and it's a big but - if someone had been quicker off the mark back in 1997 and I'd started something meds-wise before 2002 I might not be in the pickle I now am. Can't change it though, what's done is done.

    I often wonder if the newly diagnosed tend to think of us old hands as a bunch of happy pill swallowers who don't care about what might happen in the future. I don't think we are, experience has taught us otherwise, so we understand that this is what we have to do to minimise future joint damage and to bring a hidden enemy under control. Obviously I would far prefer not to swallow and inject but I know what life can be like when I don't and it's far less fun than when I do. I'm currently off everything thanks to an infection and feeling it in my joints more and more.

    When I started humira my mother was convinced it was the silver bullet, even my rheumatologist promised me I would lose the crutches and not need any more pain relief. Stupid woman to make such a promise but luckily by then my expectations of any med were firmly fixed at zero. I didn't tell my mum that anti-TNF stood for anti 'tumour' etc. because I knew that as soon as she heard the word 'tumour' she'd be thinking all the wrong things and I didn't have the energy to try to correct the erroneous thinking. Neither did I tell her that my risk of contracting some form of cancer would be raised by my taking this drug - my view is they can now cure more and more cancers but not arthritis. Let's face it, arthritis is not as 'glamorous' as cancer whose adverts can move people to tears. We don't attract the funding or research in the same way because millions of people (including children) have some form of the disease, it doesn't kill us, and thanks to the DMARDs no longer causes the deformities which I used to see when I went to rheumatology. I now see people strolling in and out of their appointments with ease, not a stick or wonky finger in sight. I'm the oddity with my crutches or rollator. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • pilgrimchris
    pilgrimchris Member Posts: 27
    edited 30. Nov -1, 00:00
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    thank you everyone for their comments. I'm not in any way criticising the NHS, i understand the way the system has to work. My point was more that as a newly diagnosed patient (aged 43) that it took some time to get to a rheumatology consultant and then i had sulpha (which wiped me out more than the PsA) and now Meth (which has had no impact at all, other than a poor liver reading). At the same time i have read a book and experiences online that do make it sound like people have to go through several DMARD's before they get to Humira type products which really make the difference. I've also read online about a well known US golfer who has the same diagnosis but seems to have been put straight on Humira and says he feels back to normal and amazed how quickly it was resolved.
    I understand the system challenges and will stick with the NHS but as a father of three, who needs to work and function in a high stress role, it does feel a bit like i'm wasting time before i get the right solution (which in a private health system - which i disagree with - i'd get immediately). but then it may well be i'm overstating the benefit of these recent drugs, i really don't know, just working through a lot of conflicting emotions (and a lot of denial and trying to pretend this isn't happening!)
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
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    Thanks again Stickywicket and Dreamdaisy.I think that I am beginning to 'get it' and see the bigger picture.I certainly don't think that veteran sufferers are a bunch of 'pill swallowers'.I think that my views have been due to a lack of experience.Like Pilgrimchris,I believed that Humira was 'the drug',solely due to my dear friend who had all joints,except her hips! affected by RA and found that Humira has brought her FULLY back to normal.Also,Dr Sheeran,at Cannock Hospital really seems to extol this drug as wonderful and puts everyone on it asap.But,I am now beginning to realise that it doesn't work for everyone and we must remember that successes will be extolled,and failures likely not mentioned.We may hear of how a drug/event miraculously 'saved one's life',because folk write about it.But folk rarely bother to go to the trouble of writing about failures,which is where this forum is invaluable.Wouldn't it be lovely to know the TRUE statistics on Humira's efficacy?Pilgrimchris like you,I have been in denial for a while and almost believed that,on the last blood test,that the doctor was going to say,
    'Fuss over.Inflammatory markers all within normal range' instead of which he called me cos both markers for the CRP and ESR test are just unbelievable high and ever increasing.It's only now that I have began to accept that these markers won't decrease without meds
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
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    Sorry.Not finished yet.Pressed wrong button.

    Like you Pilgrimchris,I am very unhappy about my diagnosis and WAS in denial until a few weeks ago.Denial because I don't have typical symptoms,denial because nobody in my family has this disease,denial because I couldn't accept it had happened to me,denial because my only two hobbies are walking and D.I.Y.But,my blood test results aren't in denial,neither is the pain in my joints.Whilst you and I may believe that Humira will be the answer,we can't be sure.I was sure before,but I'm not sure now.For example,it didn't work for DreamDaisy.This forum,or better said,its members are proving invaluable to me.The generosity and time taken by some members is helping me to get a better perspective and I have changed from crying and yelping in private because of the pain and my predicament,to gradually accepting the cards that I have been dealt.By accepting these cards,I now seem more focused on trying to get it all sorted out rather than being sad and angry.
    Hey DreamDaisy-I'm kind of glad that inhalers came around when you were 12 :) but I understand and respect your perspective.And thanks again to you and Stickywicket.You don't know how much you have both helped me
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Melanie17 wrote:
    Wouldn't it be lovely to know the TRUE statistics on Humira's efficacy?

    According to The National Psoriasis Foundation (http://tinyurl.com/j6ww9qp) in clinical trials with humira:

    'For arthritis - “about 36 percent of people taking Humira experienced a 50 percent improvement in the severity of their psoriatic arthritis after 3 months.”

    For psoriasis - “about 70 percent of the individuals taking the recommended dose saw a 75 percent improvement in the severity of their psoriasis after three months. “ '


    As you can see 'an improvement' for only 36% hardly constitutes a universal remedy. We do have to accept both the disease and the limitations of ALL the meds on offer.

    I do feel for all newly diagnosed people who are struggling to find something that works sufficiently to enable them to carry on with their former lives. Yes, there will always be some who find that golden bullet but, for most, the arthritis cannot be circumvented and lives must be modified, however difficult that may be both physically and financially.

    The 'well-known US golfer' is Phil Mickelson. Yes he takes, or did take, humira and it clearly works / worked for him but the above statistics show he's simply been lucky not only in having a world champion's bank account but also in finding the right med for him.

    An autoimmune arthritis feeds on both the stress it creates and any other kind of stress so I do hope you both, eventually, find something that works well for you.

    P.S. How ungracious of me :oops: Thank you for your 'thanks, Melanie :D i think we just try to give what we would like to receive or to have received. It's a difficult and complicated business and, in time, we all learn which sites can be trusted and which can't.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    True statistics? We're dealing with the human body and emotions here and stats can be twisted any way you want so they back your beliefs. I count my triple therapy as 'successful' but my measure of success is pretty low!

    When you're a multi-millionaire golfer you can afford to hit the big guns straight away, none of this faffing-around-tinkering-with-the-edges nonsense because he can afford it. There must be millions of arthritics in the USA who cannot afford their medication so don't have it - my father's brother emigrated to Florida in the late 1970s, and did pretty well for himself, but died a very poor man in 2005 due to healthcare costs which drained his savings: he had PsA but in the Singing Detective way (based on Dennis Potter who also had the disease). Compared to him I'm in very little trouble.

    There is evidence that this dross runs in families, my parents dodged the bullets that hit me so I decided aged 16 that there was no way I could inflict something similar on any child I might have - a life spent taking medication to make it liveable is not fun. A number of my cousins have asthma and eczema but so far not any form of arthritis: we'll see about that! It can also start from nowhere as you are finding out. It's tough. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
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    Thanks to DD And SW and better said,to their kind but factual and honest information,I have now settled down.Have taken the second lot of Meth,will go for a blood test on Tuesday,and we'll go from there.I now realise that there are autoimmune issues in my family.My brother was diagnosed with ulcerative colitis about 10 years ago(didn't know until recently that this was an autoimmune condition) and my poor son has exfoliating cheilitis(they now say that this could be autoimmune).My parents had none of these things.Oh-health care in the U.S.Was talking to a young American who had an emergency appendectomy in the U.S.Clearly,a life threatening condition and a medical emergency which was dealt with properly,without question.After the appendectomy he was sent the bill for the op and hospitalisation amounting to several thousand dollars-think he said 18000 dollars.
    Anyway-thanks again DD and SW and let's hope in time that I will be able to return the favour and assist other newbies in the forum
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    For what it's worth I reckon you are making a good fist of things, it is a lot to take on board let alone understand. People have conditions such eczema, asthma etc. but may not be aware that they are auto-immune in cause.

    You can help people now, you are in the early stages like many who join and your experience is, for them, far more relevant than mine. Sticky, me and others can supply experience, information and some knowledge of living with these conditions but for us it's just more of the same, it's here, it's not going anywhere and we accept that we cannot be 'mended'. Keep in touch, ask any questions as they arise and we will do our best to help. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    It's a big diagnosis to take in and, in this day and age, an odd one ie the meds won't cure you but you'll be on them for life anyway :? .

    I'm sorry to hear of your brother's ulcerative colitis. I was once in hospital with a poor lady who had both – ulcerative colitis and R.A. Horrible.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Melanie17
    Melanie17 Member Posts: 67
    edited 30. Nov -1, 00:00
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    Well,I learn something new every day!Hayfever,asthma,eczema-I didn't know that they were also autoimmune and we all have one or the other here,or a bit of both.I now see that I am more likely a genetically susceptible hostess for PsA.I suppose we are dealt the cards that we are given and I accept that now.Why couldn't I have been dealt the 'genius' card?Surely that's a bit genetic?

    Kind regards,
    Melanie recently AKA Bony M.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I have no idea what my Ma was told about my conditions when I was small / young but I do know that by the time I was sixteen the phrase 'auto-immune' was being casually tossed around my various doctors and that's when I learned it was the root cause of my ill-health: my immune system would fire up and attack me over things that didn't bother anyone else - and it still flaming does! :wink: People were aware that 'things ran in families' but they didn't know why because medical knowledge wasn't as advanced as it is now. We live and learn, yes? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben