Adult onset disease.(AOSD)

[parkie]

AOSD is a vey rare RA, I have been on Methotrexate twice, but had to come off it as kidneys were making too much Creatine. I am now trying Encrel (Etanercept) injections once a week, along with sulfasalazine and Hydroxychloroquine. I get very breathless, tired. Some days,not that often,the pains easier but then iI do too much and pay for it later.

[magglen]

I don't have your form of RA but have been on Etanercept for several years now and it has transformed my life. I do hope it does the same for you

[Victoria-NRAS Partner Moderator NRAS]

Dear Parkie

Not sure if you've seen the article on our website. As this is quite a rare form we don't have a lot of information, but we do have an article that may be of interest along with a patients story:

nras.org.uk/about_rheumatoi...

Hope that helps

Victoria

(NRAS Helpline & Information Coordinator)

[Ee70s]

Hello

I too have Onset stills Disease and have had for 7yrs now.If you would like to chat that would be great as i have never met anyone with this disease,

Take care

E x

[parkie in reply to Ee70s]

Hi Ee70s, I also haven't met anyone els either. I have had AOSD for nearly 3yrs, I also Addisons Disease which is making the medication hard to be compatable with both diseases. Is under control with the disease? Do you have any advice for a new comer like me? Speak again, take care and thankyou Parkie x

[Tiddles]

Hi Parkie and Ee70s,

Wow I was diagnosed 16yrs ago with severe AOSD and have longed to find another to share experiences and help each other through the roller coaster that comes with the Stills dragon as I call it. I have asked to be put in touch with another AOSD patient for years and when I asked again last month my brilliant Specialist Nurse suggested I try here and just like that you are both here, I can't tell you how happy I am to know I am not alone. It would be really great if we could chat about our experiences and help each other, if I can help you in any way I will as I know it can be a very lonely condition. I don't really know where to start. I have had many treatments over the years from Sulphasalzine to Entanercept and more in between but the Stills always seems to find away around them until touch wood now, I am currently on Methatrexate injections weekly, Kineret injections daily then the usual steroids, pain killers etc. With the flareups over the years I have systemic damage with fused joints etc and yes it has been a struggle sometimes however my medical team now are fantastic and enable me so have learnt to enjoy each day as it comes. I would love it if we could support each other and even become friends as there really isn't many of us going living with this. I know with Stills we can all have good days and bad so I will sign off and hope to hear from you both. Sending you both a huge thank you, its amazing how much it has lifted my spirits knowing you are there. Txx

[parkie]

Hi Tiddles, its great to hear from you,like you I don't know where to start,so here I go. I'm 59, and female, live in Kent. My consultant has had trouble with the medication as I also Addisons Disease, and the medication can react against each other!!! I find that I don't plan too much in advance as I just don't know how I'll be one the day. I want to go to day classes, for the social side as well as learning something and brain stimulation, but feel that it could be a waste of time and expence if I don't feel well enough to go. Like you I do take each day as it comes but sometimes they seem not to be that often then Imay have a few good days and waiting for the bang to happen. One thing is I have 2 wonderful daughters who at times must hate seeing me as I may cry and moan, but they are always there for me regardless.It has made me feel so good that there is another person out there with AOSD, and will love to keep in touch, we need to share our experiences to possibly help each other. Speak soon take care Parkiexx

[Tiddles]

Afternoon Parkie, How lovely to hear back from you, hopefully we can swap notes and support each other as I can relate to all you say especially the frustration at not being able to do what we want when and all the planning ahead. I am going on holiday for 2 weeks this week which will be the first time in about 10 yrs and the preplanning is exhausting and frustrating. Simple things that no one else would think about like has the hotel got a fridge for me to store my medication, getting a doctors letter to take the drugs onto the plane (secretly worrying if I take a flare when I'm away from home will the medical folk know what to do with me with the language barrier) but on the plus side at least I feel well enough to have the holiday. To let you know a bit about me I'm 42, female and live in Scotland. I was diagnosed 16yrs ago after 2 long years of unexplained sudden issues resulting in trips to A&E such as waking up unable to walk or chronic pain in my side which would cripple me but leave after a few hours or huge temp rises at night from about 10pm where I felt my brain was being microwaved and it would stop again by 2-3am - I was told by a house doctor in London at one point that he thought it was 'psychosymatic' which made me question if I was in fact going mad! Before that I was a picture of health, never unwell or at the Doc's and I loved sports. I have 2 sisters (one a twin) who I would be lost without and are healthy (thank goodness). My parents are great and 'get it' but my partner too but he struggles sometimes as he has to live with me (which isn't easy somedays) after all this time I think he is a 'fixer' and can't get his head round how they can't just fix me. My Consultant said to me last month after another period of flares and then a sudden remission "I have no idea what's going on with you, in 50yrs time we will know but for now its a mystery". Unfortunately I don't have any children, the Stills started before I had the chance to start a family and I was so ill that even if I could have had a successful pregnancy I wouldn't have been well enough to look after a baby for long periods at a time, but my sisters have 5 between them so they let me indulge as Auntie. The kids are great, if I am struggling to walk or upset with the pain they come and give me a cuddle and ask me if its the 'bugs' in my joints and if the Doc's can't kill them - which makes me smile the idea of little bugs in my joints! I am sure your daughters never think you moan Parkie, I know the struggle that every day brings with this from the moment we wake up and if your anything like me simply getting out of bed and getting my bra on is excrutiating some mornings (its not uncommon for me to be sitting on the edge of my bed in tears just doing that task as my shoulders and wrists are so damaged now). I know what you have to cope with and your a real hero in my eyes so don't beat yourself up thinking you moan. If all else fails we now have each other to 'moan' to. When I was young everyone had Pen Pals, just think how 'lucky' we are now we can have our own little Stills Pal club at least we can laugh at ourselves. Ok I better stop or I will be boring you, I know I said it before but thank you Parkie it sounds daft but you really have lifted my spirit, it has been a very lonely and scary 16 yrs living with AOSD, I know my family are there but you are actually living with it too so we can help each other, I am so very happy. If we don't speak before I go on my holiday take care and I will give you an update when I get back. Take care Txx

[Tiddles]

Hi Parkie

I have just googled 'Addisons' Disease as I hadn't come across it before, talk about a double whammie that really is bad luck. Let me know how they came across those two, was it Stills first and then Addison or did they both come at the same time and how the heck do they treat you for both? I see President Kennedy had Addisons but they seemed to keep that a secret during his time. Your keep well Tx

[Ee70s]

Well Good morning my Stills club pals lol

Its so nice to have read your stories and see that we all 3 have so much in common.Well here goes...Im 41yrs this year,Used to work for the airlines traviling the world and looking after my 5yr old,Then "BANG" ....I have had stills for almost 8yrs,i had a very bad "flu like"cold for 3wks could hardly walk and life was a real effort,would feel inside freezing cold teeth chatting/shaking wrapping up with jumpers/hat/winter coat in the summer yet boiling hot to touch,kept on going to the Drs they took bloods/urine samples etc etc you have "REAL FLU" was there answer then after 3wks,I woke in the night with terrible pains in my leg and body i just could not move at all,i called out to my daughter and asked her to call my brother,who came round straight away.He had to carry me to the bathroom,he then called for an ambulance.When i arrived at hospital i was put in a room on my own,Which was very scarey as it was only the 2nd time in hospital in my life(very different now)The reason behind a room on my own was the RASH as you both most properly know,they thought it was meningitis.I was poked and proded my arms looked horrific with brusies and holes/tubes everywhere.I was not alloweed to see my family or friends for a wk it was a very scarey horrible time.I had to have my cloths and bed changed 4xs a day as my sweats where terrible.Then on my 3rd day an American Dr came in to examine me he did some test and within 5hrs he came back to me and said you have Adult onset stils disease,Then that was the end off my fun/exciting/carefree do what i like when i like life,Hello to the life of Stills...

Sorry Parkie/Tiddles will have to continue later as have bad wrist shakes,

Take care

E x

.

[parkie]

Hi Tiddles and Ee70s, hope you are both well!! I've not been too good as started Enbrel, got rash, started to reduce steroids, felt dreadful, had emergency bloods done, they came back greatly improved.......best news for months...my body's having withdrawel from being on the high dosage of steroids for 2years, but I'm sticking with it as they ( AOSD and Addisons) aren't going to beat me.....I hope. How was your holiday, Tiddles. Where did you go? E you would laugh at me as on my laptop I have both 'mouse' and 'touch pad', so when I get the shakes I can continue a little longer with the other. Ihave to laugh at myself sometimes when I've got the shakes, my family say I ration then on tea and coffee as I 1/2 fill then cups, have to use a spoon otherwise everyone gets to share my food, 1 of the worst things is not being able to do sudoku, crosswords etc, knitting, croucheting, anything were I've got to use my hands......grrrrrr. Do you both have decent Rheumys? Speak again later, take care Ann xx (Parkie)

[Ee70s]

Hello Parkie and Tiddles

Hope you are both feeling as well as can be exspected,i have to say im now really getting fed up with this wet weather :-(( I have a liitle cheeky bichon frise boy,he will be 4yrs this october and every time i go out the heavens open,this is ment to be shorts and tan time haha.I dont know what medi"s you are both on...Im on Alendronic acid saturdays,Methotrexate Sundays also everyday i take Prednisolone,omeprazde,adcal-d3,thiamine,sulfasalazine,folic acid,i also going to hospital for treatment once amonth to have Tocilizumba by intravenous infusions.Have either of you heard of Tocilizumba?My Rheumy specialist is really good,He found out about Tocilizumba and suggested to try it as he thought it maybe a very goog treatment for Stills.Iam now in my 8th month,i have to say that i dont really feel any different but after just 1 treatment my CRP went from 29-2,ESR 28-3 which was amazing he said.They have been CRP 122,ESR 73,when im having a flare up.

Do you both have very aggressive flare-ups?If so how oftern do you have them and do you have a warning when they are coming?

Its so lovely to chat to you both on here,i do hope we can help eachother out.

Take care for now x

Elaine (Ee70s)

[parkie]

Hi Ee70s nice to heaqr from you. Hope you're well !!! I'm on Ibandronic Acid, Sulfasalazine, Hydrocortisone, Fludrocortisone, Plaquenil, thyroxine, Statins, Furosemide, Lansoprazole,Spironolactone,Enbrel, ( Metotexate had to come of it as it was making my kidnets worse.Prednisolone was too harsh for my stomach, but hope to back on it when my steroids are at a manageble level) plus painkillers. I do have flare up's but they don't seem to have a pattern, my last blood test ( last week) was briiliant (FOR ME !!) CRP 2,ESR 7. I don't get a warning but if I overdo it then I know its possible to have a flare up. Im going to try 2tbsp of organic cider vinegar in a glass of warm water once a day, as the alkaline helps to break down the acidity in the joints, reducing the pain, can only but try, otherwise it means upping the painkillers. Have you tried it? At the moment I hate the fact that no 2 days are the same, so planning anything is almost out of the question. I'm house sitting for my daughter from 9/7 till 21/7 so I won't be on line during that time. Are you able to have a break at all this year? Lovely chatting to you. Take care Ann xx

[Ee70s]

Hey Parkie,No ive not tryed the vinegar,i dont know if i would want to as i thought vinegar dryed your blood..Maybe some old wifes tale haha.Well that will be a nice break for you house sitting for your daughter,shes very lucky.I guess by looking at your meds you take that they are really different then mine,most proberly because you have addisions disease aswell,you are a very stronge Lady,Stills is bad enough on its own with out something else

Apparently "honey" is very good aswell,i did try for a week but i found the taste so strong little like TSP.As for planning i realised 6months in "Stills" i really had to take a day at a time.Last year was the first time in 7yrs that myself and daughter where able to go on holiday,we went to Majorca had a great time.week of sun sea and laughter,just what the doctor orderd.This year we hope to go up into the Andalucian mountains,hire a villa and just RELAX.

Take care of yourself and i will talk to you on your return,

Elaine x

[parkie]

Hi Elaine I've never been to Majorca, I understand its very nice. I'm hoping to go away with my daughters next year for my 60th birthday,(its also my youngests 40th) but I doubt that it will be abroad, as I haven't any faith in there medical system. What job did/do you do? I only worked in retail, but it was very active, putting stock out, doing moves, seeing to customers, training new people, now the just the thought of it knocks me out, I've forgotten what its like to be active and the amount of weight I've gained is alot, was 81/2-9st now 12st13lb, was 14st Jan 2011, was size 10, now 16-18,but I'm alive and can grow old with my girls. Thats enough about me, please tell me a little more about yourself. What part of the country do you live? I'm in Dartford Kent. Take care speak soon Ann x

[parkie]

Hi Elaine and Tiddles, how are you both? I haven't been tooooo great, was glad to get home from my daughters although it was a change and they had a lovely holiday. Have the hospital tomorrow (friday) to see my Rhuemy consultant. I've been on Enbrel for almost 6mths but I feel that it's not done anything, sorry for moaning Speak soon Ann x

[Ee70s in reply to parkie]

Hello Parkie,ive just spent the last hr writting to you on here and sent it,but can see its not on here,not sure whats going on x

[Ee70s in reply to parkie]

Hello Parkie,here goes no:2

Sorry to see you havent had a great time at your daughters because of Stills x.How did youre visit go at the Rhuemy?Ive not been on Endrel so can not speak from experience(sorry)And dont be silly your not moaning you have friends here and people who have Stills so we maybe can help eachother xx.Instead of the people we all talk to who have had this and that and try and tell US how to deal with this But cannot.Weight wise ive been really lucky as ive stayed give or take the same weight(so far)Did get the moon face ,loss loads of hair for the first 2yrs,but that seemed to die down.Now people look as if to say "Shes not ill.She looks fine"She should be working....Well if i could i sure as hell would...Live my life for a day and see what you think then...Im down in Sussex Ann,so not that far from you.Have you been enjoying the Olympics?Im quite addictive too it ahaha

Take care

E xx

[parkie]

Hello E

Nice to hear from you, my visit to the Rhuemy wsa encouraging to a degree, that my bloods becoming 'normal', for me, but the Enbrel only has helped with the reducing of the swelling, nothing else, so he asked me to try it for another 3mths and if theres no change then he will have to give me something else....Have you heard anything from Tiddles?Hope she's ok!!! It would be lovely to be free of 'Stills' and pills for a week!!! The olmpics this year is the first time i've taken an interest, Icouldn't watch all of iy but found the cycling, in particular, exciting. Bernie and Tracy went to 4 events, Hand ball,Basket ball,Equestrian and Diving. In the Equestrian they saw Team GB get the Silver medal.... Sussex isn't far, my brother takes me to Hastings 2-3 times a year, he's a black cab driver, and the cab is so much easier for me to get in and out of, comfy too.. Sorry you spent all that time on a blog for me and then lost it, its the sort of thing i'd do..hee hee...Hope you're well, take care and speak soon Ann xx

[Tiddles]

Hi Ann & Elaine

Sorry I have been out of action. I had a bad patch then I think I lost my memory (thats age not Stills) as I couldn't remember how to log back on which may have been the Stills pain driving me a little bit bonkers. It all came back to me tonight, I think I am writing in reverse though as I had sent a reply to a message about an hour ago and its not here. Sorry I have been missing your messages so playing catchup, had steroid injections into shoulder joints last week and feeling more like me today although eating an alarming amount which I must stop. Hope your both ok. On the weight discussion my weight has yoyo'd since diagnosis from a pretty stable 9.5st to 13.5 at the worst time, size 12-18, BIG moon face too so I don't like photos being taken anymore sounds silly but I just find it upsetting, struggling with weight this year again but managed to drop down to 10.10 without sawing a leg off or super glueing up my mouth so thats always a plus point. I know the steroids are great for getting a bad flare back under control but on 60mg doses I think they turn all sane people into some kind of unstoppable dustybin so long may your weight stay the same E. The weight gains no good for the joints either so its all a horrible catch22 really. Funny you mentioning loss of hair E, I said for about 2-3yrs that my hair was falling out in alarming quantities when I washed/brushed/woke up in morning on pillow and I was told it was my imagination but I know it wasn't, like you it has settled down now thank goodness. Its a good job we can laugh at this, at my worst with the steroids the hair all over my body fell out (which no one warned me about) and much to my horror it grew all over the sides of my face and on the back of my hands really dark (which they also forgot to mention might happen) yikes - the plus point is when I dropped the steroids down the hairy face/hands look disappeared so thats was a particularly good few months with Stills not :-). Between the weight gain, the moon face and the hair gain/loss alone I think we could set up our own empathy helpline. Hope you are both well tonight and will sign off now for a cup of tea before an early night. We Stills Angels know how to party, PJ's and bed by 10pm, or is that just me? Nite nite Tracy xx

[Tiddles]

Oh I meant to ask about Tocilizumba beefore i got distracted remembering about the hideous hair issues. I think this is what my Specialist has written off for in anticipation of my Kineret/Methotrexate failing. Do you have any info on it that might just scare the Stills out of me? Sleep well. Tx

[AOSD]

Hi Parkie, Please see my new post 'AOSD - Read what it did to my wife'. My wife's recovery from AOSD is thanks to Prednisolone, Hydroxychloroquine, Fexofenadine, and the Magic that comes from daily injections of Kineret/Anakinra. Oh and now Keppra which is for her seizures as a result of her strokes caused by AOSD.