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A big hello

korekore Posts: 5
edited 9. Apr 2017, 15:27 in Say Hello Archive
Hi everyone :)

First of all, I don't have Arthritis, but am diagnosed with Adult Onset Still's Disease, which in the end has some similarities. Still, maybe there are people here who have Still's, or have at least heard about it, that I can talk to since I have so many questions that want answers!

As this is not a common condition, I can't really find concrete info on the web so I was hoping to be able to talk with others that know more about it. If however that's not possible, some of my questions concern the usage of MTX to help with the inflammations and other symptoms, so maybe I can talk at least about that aspect with someone? If so, what would be the best thread to post my topic to?

Many thanks in advance for any comment and answer I can get, and wishing all of you best of luck coping with your own troubles :)

Comments

  • dreamdaisydreamdaisy Posts: 31,543 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I'm guessing that you are somewhere on the auto-immune inflammatory spectrum (there are around 300 kinds of such stuff) but, from my experience, I think that as the same meds apply to so many conditions the precise label is immaterial. (For a number of years I was vaguely classed as an auto-immune inflammatory arthritic but, when my skin helpfully obliged with a bout of pustular psoriasis on my palms and soles voila! Suddenly I had psoriatic arthritis (PsA) but the meds didn't change to match my brand new world of label. )

    I have been taking injected meth for some time now and have very little trouble with it: it's used in conjunction with injected humira and both control my PsA very well indeed, which is a good thing. I began on tablet meth which eventually caused a skin rash so, after a break, I was changed to the injections which I do myself. I know that others find it much harder but we're all different in how we react to these things. What would you like to know?

    More people look in on the Living with Arthritis board here so, if you have time, have a read through, you may find some of the past topics to be of interest. I wish you well. DD

    PS I started my troubles aged 37, I'm now 58 so have a few years under my arthritic belt.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • korekore Posts: 5
    edited 30. Nov -1, 00:00
    Hi DreamDaisy, love your name :D and thank you very much for posting here :)

    Yes, Still's disease/syndrome is somewhere on the auto-immune inflammatory spectrum, and affects mostly joints. And yes, I figured that the general usage of MTX does not differ according to the disease it was prescribed for, so that's why I wrote here in the first place. A little about me - I was diagnosed with Still's in October 2015, at the age of 28, and am thankfully doing fine at the moment.

    I'm actually interested in the process of reducing MTX and its affects on the body... partly because I want to try to live my life med-free as much as possible, but mostly because I would like to start a family. I know everyone reacts differently, but there are still some rules of thumb I can follow? Anyway, after being diagnosed with this (after one month lying in a hospital bed, being tested for anything and everything, almost not able to move), I was put on Prednisolone and, when it indeed kicked in, they gave me MTX tablets (15mg weekly) to get of the Pred. Now, I consider myself very lucky in that it didn't cause any problems and I seem to have responded well and fairly quickly to the treatment. My blood test results are improving each month and the hospital Rheumy predicted, with those numbers, I'd be able to get off the meds by Spring 2017.

    I was warned at the beginning of the MTX treatment that I can't allow myself to get pregnant while taking it. At the time I was ok with it - I got married 2 months before the diagnose so we weren't in a hurry to have kids. The prognoses of Spring 2017 as the time to stop with the meds also seemed like a good time to make family plans.

    According to the Rheumy, the dosage of MTX should be reduced from 15 to 10 mg weekly, and then can be completely eliminated. However, after 60 weeks of 15 mg (and once again I repeat, feeling fine, blood results better every month), my "regular" doc still wanted me to continue with 15 mg. His reasoning - why reduce when you're feeling ok and the meds aren't making you sick? After explaining that I wanted to start planning having a family, he went to another extreme - you can stop right now if it's urgent and if you have a flare up, we'll treat it with Prednisolone again. But that's not what I was going for :/ Anyway, after I insisted, he reduced the dosage to 10 mg, and I've been taking it for 5 weeks now. Prednisolone is out of the picture for about half a year.

    I know that sometimes the only method available is to try and see how things go. And I'm now almost 30 years old and would like to have kid(s). But at the same time, it's not an URGENT matter! I want to have a plan, if only to be able to put some dates into my head. What are some "normal" time frames of MTX reduction?
    How long should I wait before completely removing it and, after it's done, how long should I wait before I can try to conceive
    ? These are the questions I need answered to have my peace of mind - that I didn't abruptly stop the treatment but at the same time didn't prolong it more that necessary.

    The only info I find on the web about conceiving after MTX are about people that got MTX shots as a treatment of ectopic pregnancy, and none about precautions and/or consequences after a prolonged period of time taking the MTX. How long does it take for the meds to exit the system after that period? And at what values should I be looking at after my blood tests to know how I'm doing?

    I know that's a lot of questions and I'm thankful for every info I could get. Unfortunately I can't talk to the hospital Rheumy because, for that, I would have to be admitted to hospital again and the health insurance is not ok with it :P. But on the other hand, I wouldn't have insisted on reducing the dosage if it weren't for his predictions, and I feel confident that his knowledge of the disease and the meds is far better than that of my regular doc.

    All in all, my biggest question is about the effect and duration of MTX in my organism. I guess there's no way to know for sure if my "good" state atm is really only a response to the meds, or I can hope that the disease is in remission. Talking with my husband we've decided, if it's the only option, to get off the meds as soon as possible and see how it goes. But I know, if I say that to my doc, he'll only suggest that I do it immediately. And I want to know - is it advisable to do that? Have I taken MTX (10mg) long enough to allow my body to adjust to the lower dosage and still not react badly? Is there any way to tell?

    Apologies for the long post but I wanted to address every side of my story so you have all the info. I underlined the questions I have to make it easy for anyone that has some experience and answers/advice to read through them quicker. Once again, I appreciate every comment I can get on my story. I realize it's your personal time that you're investing in this forum and am very grateful for that :) people like you make life better :)
  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    Hi there and welcome from me too.

    I've always thought of Stills as being part of the dysfunctional arthritis family probably because I was diagnosed with it way back in 1961 when I was 15 and now am regarded as having plain old RA. Mine wasn't Adult Onser. In fact, I think nowadays it would have been regarded as JIA but a rose by any other name :wink:

    Many of us on here take methotrexate. I've been on it for years. Please ask away if you have questions. Living with Arthritis is the best forum for them as more look in there.

    .I'll try to be around myself but right now I'm on my last few days at my son's in California and after that I'll be struggling with jet lag and Easter for a while :lol:
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • korekore Posts: 5
    edited 30. Nov -1, 00:00
    Hi there, stickywicket, and thanks for replying :)

    I'll be sure to check in on the Living with Arthritis board as both of you suggest, maybe I'll find some info and, if not, I'll ask away over there. Only, I'll try to be a bit shorter with my story :P

    I hope you enjoy the rest of the period with your son, and wish you a lovely Easter time! Whenever you check in would be appreciated. I'm currently in the process of moving so I'm also here less than I otherwise would be, but I'm still looking forward to each message, whenever I can get it :)
  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    I apologise. I managed to reply to your first post while being blissfully unaware of your second.

    Please bear in mind that the treatment for AOSD might be completely different to that for RA, PsA etc etc. I say that because, from my time on here, I don't recall people going onto meth then coming off it so quickly. Please don't be disheartened by that. As I said, AOSD might be a completely different kettle of fish and/or yours might have been caught and dealt with very early.

    As for your questions, I'm afraid there's no one size fits all solution. In fact, I saw my rheumatologist recently and asked if I could try reducing my meth again. (I've been on it approximately 17yrs starting at 22.5mgs and now on 10.) He gave it the thumbs up but emphasised just one pill at a time and a very generous interval between reductions as, according to him, everyone 0reacts differently.

    Re children -my arthritis cleared up completely during my first pregnancy but returned with a vengeance once he was born. My second pregnancy was a nightmare and I took a long time to get everything back under control. Now it's common to prescribe pred during pregnancy but it wasn't then. I think (but I'm not sure) 6 months clearance is advised before trying to conceive after giving up meth.

    You really do need to talk to your rheumatologist about this. Having two, with conflicting ideas, will not be helpful but I'd guess that the one who said wait but later suggested you might come off meth now might have been thinking that there's no perfect time. Sometimes we can get our diseases into remission but there's no guarantee they will stay that way whatever we do or don't do.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,543 ✭✭✭
    edited 30. Nov -1, 00:00
    Aren't you lovely and polite? Many never thank us for taking the time to reply so to read your kind words was lovely. Thank you for your appreciation.

    There are many threads on LWA about pregnancy, coming off the meds, flares, resuming the meds etc. so you may find those of interest. Arthritis and children are identical in that neither have an off switch and both can be very hard to live with. :) The following is my personal account of my choice and why I made it.

    I decided aged sixteen not to have children, a decision I have not once regretted. I was born with one auto-immune condition (eczema) developed my second (asthma) aged seven then began the third, the psoriatic arthritis, aged thirty-seven. That in turn has led to osteo arthritis and fibromyalgia. My life, for the past forty-six of my fifty-eight years, has consisted of taking constant and necessary medication to keep me going, and will until I go where the NHS will be of no use whatsoever. For me the risk of passing the dross on to another generation was a responsibility too far - I remember my then GP saying, quite casually, that my children might be OK but my grandchildren probably not. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • korekore Posts: 5
    edited 30. Nov -1, 00:00
    Good day to all of you :)

    Stickywicket - no need to apologize, your post was "published" before mine, probably because of its length - guess it had to go through a moderator or something. So, you didn't ignore it, you just never saw it :P

    Hi Grace, and thanks for the kind words and sharing your experience. It's always good to hear different stories, even though mine could be yet another surprise.

    DreamDaisy - I was raised polite :D but no, really, I know that it's easier to ignore a post (especially long ones like here :lol:) than to take time to patiently read through and answer. Even more so when I guess it's a subject already chewed through so many times - I'll take the time to read through LWA for the answers I'm looking for, as soon as I'm finished with the moving :lol:
    I can understand your decision about not wanting to pass the burden on to the next generation. Those thoughts have crossed my mind on more than one occasion, but the rheumy convinced me that Still's can not be inherited. And except for this "minor setback", I and my ancestors are fairly healthy :P so I guess we'll try our luck.

    Back to the subject - I'm not easily disheartened, and it's always better to say the hard things from the beginning. I'd rather be prepared for the worst-case scenario than be reading stories of how easy it all can be. That said, I guess that AOSD can also be different, and the rheumatologist from the hospital (the one that predicted spring bla bla) is one of the best experts in the region. So I'm inclined to believe him a bit more than the other doc :P

    Tomorrow I'm going for my regular blood check and I'll ask for an appointment to talk to the dr. Hopefully they'll manage to squeeze me in before Easter, so I'll try talking to him once more. If he can't make up his own mind, I'll try to get a contact from the rheumatologist and see if I could pose him the questions that are bothering me.

    I thank you all once again sincerely for your good will and time trying to answer my questions, but I guess the biggest answer is - everyone reacts differently. I'll be sure to keep you posted, (if you want to read on :P) as it is easier to talk to people who've gone through (or are still going through) similar situations. I live with my husband around 1300 km away from our families :| so it really is wonderful to talk to other nice and kind people, like yourselves :D
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