Anyone out there with Adult Onset Still's Disease?

Carol79

Hi everyone,

I am 31 years old and was diagnosed with Adult Onset Stills Disease two years ago, just before I got married. I don't think I have as hard a time as other people with AOSD in terms of the stiff joints, but I do feel pain in my arms and shoulders a lot, which is hard as I had a baby 10 months ago and some days I can't pick her up as it hurts too much. But we get through somehow, I think she understands even at her early age that mummy isn't that capable some days and she just has to entertain herself. My main issue is that I get a rash all over my body every evening which is incredibly ugly, so no matter how warm it is, I'm completely covered up as I just can't cope with the stares. I feel like a vampire ! My skin is also very itchy throughout the day, I permanently feel like ants are biting me. I don't take medication as prednisalone had no effect on the rash and the joints are bearable with ibuprofen. I'm trying for a second child so I don't want to take the other options available yet.

I'd really like to connect with other people with AOSD, there are so few of us and I do feel like an outcast with it. It's hard when even the closest people to you can't understand. The lack of central information about this disease is so frustrating, so it would be great to hear about other people's experiences.

So if anyone out there can relate to that, please get in touch!

elnafinn

Hi again Carol

I am so sorry that you have had no replies to your thread. I do understand that AOSD is pretty rare. I would give a call to the helplines (0808 800 4050) and I would think they have some information they could send to you and may even give you some pointers of where else to look.

I did a google for discussion forums for you, although there are some there was not much feedback. I did find an american AOSD forum that was fairly active but perhaps that would not help you too much.

I know there have been people on this forum with Stills disease but they have been few and far inbetween.

I am sorry I could not be more helpful but the helplines will be as supportive as they are able to be.

Elna x

Carol79

Hi Elna,

Honestly don't worry about me not getting any replies. I wasn't expecting much and certainly not so quickly in any case. Maybe someone will find me on here eventually.

I probably will call the helpline, but to be honest even my rheumatologists know so little about AOSD that I have little faith so far in being able to get any meaningful information from anywhere. Only one doctor, a Dr Bernstein in Manchester, has been able to give me any information - he was the one who originally diagnosed me. And whilst that is frustrating, what I am really looking for is other patients who I can connect with and share experiences with. I've found the american forum too, but like you say it's not very helpful - it's also predominantly kept active by young people with Still's rather than adults with AOSD, which is a bit different.

But thank you anyway for being so proactive in responding to me. You do such a good job for very little thanks and you should know that people like you really do make a positive difference.

All the best,

Carol

elnafinn

Aw Carol, thank you but it was no trouble at all, it is bad enough with these diseases but when it is a rare one, which AOSD is, and so not much support for those that are suffering with it, you must sometimes feel very alone with it all and I truly sympathise. It must be very difficult for you to look after your little girl sometimes, but children are worth their weight in gold and I see you are going to try for another one too. I do wish you well in every way. You so deserve it. Do keep looking in from time to time and I shall endeavour to remember your username and contact you by PM if someone else calls in with AOSD . I would try the helplines you never know they just may be able to help you.

It has been lovely to chat to you and please pm me anytime.

Elna x

elnafinn

Hi Carol, it is me again! :roll:

I just used the Search button at the top of the page and typed in AOSD and clicked on Living with Arthitis forum and two usernames came up, colinm posted in May 2010 and emmaholl posted in April 2008.

Elna x

jg1966

Hi Carol

Yes there is, I got my diagnosis in July 2010. Came out of the blue I just thought it was general aches and pains, started with a sore shoulder then my neck. My Gp fobbed me off at first and told me to excercise wouldn't mind am not over weight eat healthly etc. Few days later a rash appeared side of my neck and down left arm and on fingers., by this time I felt awful was in a lot more pain couldn't move my neck.
My partner took me to walk in centre, I got straight admission and spent two weeks in hospital, 1st week they hadn't a clue and were testing me for just about everything my temps were shooting up at night then fine during the day. I'd told them family history my mum suffered with lupus and thought that may have has something to go with it - rheumatology specialist came to see me, looked at my charts, examined me then got diaognosis.
I was on steriods initially to control things, now on methotraxate 20mg weekly which seems to help. I still get hot and cold flushes, rashes every now and again. some soreness of wrists, shoulders etc. last time consultant gave steriod injection in both wrist & shoulder which was a relief.
You'll have good days and bad days, knowing when to rest is a key. easy said when done though with a full time job and family, thankfully both have been very supportive

Carol79

So good to hear from you jg1966, though of course sorry that you also have this condition. Glad to hear that the methotraxate controls it to a certain extent though, that's the one my doctors are hoping to put me on as soon as I've finished having kids.

Your story sounds very similar to mine to a point. One day I had a sore knee at lunch, by the end of the day I couldn't walk and this rash was covering my legs. I was taken to A&E in Edinburgh as I was up there for the day, but discharged the same night because although my blood test results were (quote) "very bizarre", they had no idea what was wrong and thought it was a virus. I went into another A&E in London the following night and this time was kept in for 8 days, but they still couldn't find what was wrong with me. I was on Diclofenac and Tramadol every day but wasn't really showing signs of improvement, but they discharged me anyway as they just couldn't work it and thought I'd eventually get over it. Four days later the drugs stopped working altogether and I was taken to yet another A&E (this time in Manchester!). I finally got to meet a brilliant Dr Bernstein at this point and within 5 minutes he told me I had Still's. So I went straight onto prednisalone while they spent a few more days testing for everything else to rule them out, and then 3 weeks later I was allowed home. After four months I came off the pred, was totally back to normal, bar the occasional sore joint, and we all thought I was cured. Then I got pregnant, had no symptoms at all throughout - good days - and then literally as soon as I gave birth, the rash started all over again and that's where I am now. Its a funny one isn't it?!

You are so right about knowing when to rest, though like you say, life doesn't always give you the choice. But likewise my family have been amazing, it was pretty tough when I thought my wedding wouldn't take place (I got married four months after I got Still's so I was only just back on my feet in time). But as I say, what I have found really hard is knowing that no matter how hard they try, my family can't truly understand the emotional rollercoaster. It's a very isolating disease and so unlike anything that most people have ever experienced so they just can't empathise.

Anyway, god please forgive my verbal diarrhoea! Its just so good to finally make contact with someone else!! Please do let me know how you get on with the methatraxate, it turns out I'm actually pregnant again (though sadly this time it doesn't appear to be stopping the symptoms which is somewhat worrying) so hopefully if all goes well I can start thinking about trying these drugs. Also if you like I can give you the details of Dr Bernstein. He's a private consultant but it was worth all the money we had to get to see him and he's also pretty nice about doing Q&A with me via letter without charging me. He's the only one I've ever met who seems to know anything about it all.

Best of luck!

Carol

elnafinn

Hi Carol

Just popped by to say hi to you and am so relieved that you got a reply from someone in the same/similar boat as you. Do please, keep calling in, hopefully if you can keep your thread fairly high up, on the page, new people who join, will see it.

Congratulations to you on expecting again.

Look after yourself,

Luv
Elna x

heatherbignold

Hi Carol,

My husband Roger was diagnosed with AOSD about 4 to 5 years ago having suffered from a gradual build up in symptoms. He was initially diagnosed as having Rheumatoid arthritis, but continued to be unwell and losing weight until he took in a photo of his rash which only appeared in the evenings so the doctors never saw it!

To cut a long story short he is now taking steroids daily, injects methotrexate once a week and was also injecting Enbrel until he had a spell in hospital because of fluid around his lung. We are still waiting to hear whether or not he should start using it again.

As you so rightly say, it is so hard having so little information to go on, and even the specialists seem to find it hard to know quite which way to go.

The symptoms seem to vary on a daily basis, which keeps us guessing! Apart from this last spell, he has never been hospitalised though getting about can be difficult. It seems at times that just a minor hurt can lead to a spell of immobility.

I am reading this to him as I go, and he is interested to know what your blood test results are like. He has very high levels of inflammation, and very low levels of iron which does make him pretty tired at times. We are quite lucky in that our children are much older: it must be so difficult for you with a young baby!

Take care and look after yourself,

best wishes,

Heather (& Roger resting in the other room!)

Carol79

Hi Heather & Roger,

Really good to hear from you both. It sounds like Roger has a far worse time of it than me, which I have suspected before, as I don't tend to suffer from stiff joints anymore, just the rash. It's so weird that it's just in the evenings isn't it?! My Dr Bernstein told me that's why Dr Still was the first to diagnose the disease because he was the house officer on in the evenings and was the only doctor therefore ever to see the rash. I often wonder what would happen if I took a holiday in Australia - would it appear just in the morning???

Because I don't tend to get stiff joints you won't be surprised to learn that my blood tests tend to be quite normal for inflammation levels, though I too can have a slight iron deficiency and Vitamin D is also often low. However strangely, when my bloods were tested immediately after giving birth, my inflammation level was through the roof and certainly when I first got AOSD it was around 250 for a few months. Thankfully it does appear to have normalised now, though I only get tested in the mornings and I'd be intrigued to know if it changes in the evening. If it helps, I will keep you posted on my blood tests as I suspect I will have them more regularly now to make sure my pregnancy is ok.

Would you mind telling me which steroids you use daily? I was under the impression that prednisalone couldn't be used on a long term basis, so am intrigued what other steroids are a possibility. I hadn't heard of Enbrel before, I do hope you feel better after the fluid in your lungs, that can't have been pleasant.

All the best,

Carol

heatherbignold

Hello again,

Roger is on prednisolone. He had steroid injections for a few months but found that it took a while for the steroid to get into his system, then he would perk up, and then he would gradually run down again until the next injection, but daily tabs keep the levels steady.

He also has to take a weekly tablet for his bones because of the steroids. We know they aren't ideal but they do make such a difference to him that the doctor felt that in his case the risks with the steroids was worth it. And maybe as he is already in his 50s that makes a difference too.

I hope you carry on relatively ok- are you on any permanent medication now?

There are so few sufferers it makes a ral difference to chat online! So, thanks for that,

keep in touch,
Heather

Carol79

I totally agree! I think it's also hard for people who live around those with AOSD, like yourself, as it must be very distressing to see your husband go through such trauma. I know my husband really struggled at first, though he was such a support, and he still feels very useless when I get upset about it.

Very interesting indeed about the prednisalone. I must admit I was very disappointed that it didn't work half as well the second time around as it had the first. When I first went on it, it started to work immediately but when I took it when my symptoms came back after giving birth it had no effect at all. Admittedly though I was breastfeeding so I couldn't take a high dose. I was on it for some time, probably about 3 months, and they did x-ray me for any signs of osteo, but nothing so far. I'm not taking any medications at present because I'm pregnant, but once that finishes (!) I'll be the next guinea pig for whatever is out there. Quite a vulnerable feeling to be honest, knowing I can't even take ibuprofen if I get a stiff joints episode, but my last pregnancy kept my symptoms at bay so hopefully eventually this one will do the same.

Such an odd condition. Everyone seems to have different variations of it, with slightly different symptoms and different reactions to medications. Guess we just have bide our time till somebody does a darn good study on it and gets it fixed!

Carol

Carol79

Hi to everyone who has posted on this forum so far, hope you are all doing ok.

Just thought you'd be interested in this. Through Arthritis Care I recently got a private message from Laura, who is 29 and has had Still's for 10 years already. She is setting up a new blog about her experiences and is also thinking about starting up a UK version of the Still's Disease Foundation in the States. I've really enjoyed talking to her so far, she has been through so many different types of treatments and has a great wealth of experience. On top of that she is a good writer, and her blog is very very interesting indeed. I found out more about my condition in the ten minutes it took to read her recent posts than I've managed to learn in 3 years from hospitals.

So I asked her permission to share it with you and she's happy to do so: http://stillslife.wordpress.com/

Highly recommend you check it out if you are looking for info on Still's, I think she'd also appreciate the support.

All the best,

Carol

Rebekah

Hi Carol,

My name is Rebekah, I am 21 years old and have been diagnosed this summer with AOSD. I have been looking through the internet for people with the disease, as like you I have found that none of my doctors really know about it. I was in hospital for a week in May, whilst they ran hundreds of tests and I was told I had X Y and Z, until finally a lovely Rheumatologist was called in, took one look at me and went Stills disease.

I have been on Steroids and Metharexate for a couple of months now, but have not really found it has made much difference.

Like you I do not appear to be suffering as badly as some people on here, but it has had a significant impact on my studies. I am currently a Law Student, and was studying to become a barrister but I am unsure how the disease will effect me in the long term so that's going on the back burner for now!

I have found the american forum, but I have found that a lot of it is irrelevant to us in the UK and as there aren't that many UK users on there its hard to get information about Doctors who know what they are talking about!

Anyway, I must get back to my revision, these exams wont sit themselves (unfortunately) but its been lovely finding someone else in the UK as rare as I am!

Rebekah x

frogmorton

Rebekah

l do not have stills disease, but just wanted to welcome you to our forum. A lot of the issues are very similar so l hope you will stay and become part of our lovely group of people.

Love

Toni xx

Carol79

Hi Rebekah!

It's wonderful to hear from you, though I'm dismayed to see how young you are and having to cope with this - such a shame. But you have to believe me, it's not the end!!! You will find a way through. I recall very vividly my feelings when I was first diagnosed, and three years on I can say it's not as bad as I expected back then. Life is different for sure and there are times when I am jealous of everyone else being normal, but I think you find a "new normal" which eventually becomes life as normal, and eventually you learn to make the most of it and even enjoy it again. I do hope that you find it useful talking to me and other people on here, as I've certainly felt a lot less isolated since making contact with other patients. Everyone has a bit of a different story, such is the way with Still's, but in a way that's good as it gives you the real spectrum of knowledge.

It would be good you taking a look at Laura's blog, which I've referred to in earlier posts. She is excellent at making detailed notes about the different medications she has tried and the effects they've had. As I say, everyone is different of course, just as prednisalone seemed to work for me but not for her, or you by the sounds of things, but at least next time you see your Rheumatologist you can be armed with a little more knowledge and more direct questions.

Do feel free to drop me a line anytime, even if it's just to have a chat. I found it really hard that none of my mates could fully understand the psychological effects of having the ground ripped from underneath you, much as they tried. Laura and I particularly have become rather good mates and it's always to good to hear from her. We both had the same experience as you of the american foundation, just not for us, and in fact she's talking about setting up a UK version so she'd be delighted to hear from you I'm sure.

All the best - and keep going with the exams!! Honestly, I know it's easier said than done but there will come a time when you'll beat this damn thing (at least into some sort of submission anyway!) and you'll need those qualifications!! So don't stop now. Take care X

gems907

Hi

My name is Gemma and i am 21 yrs old and was diagnosed with AOSD in April. I live in Northern Ireland and am so glad to know that there is other people in the UK who have this rare condition.

It came as a relief, but also a shock as i had been having high fevers, aches and pains, stiffness, rash and sore throats on and off for 6 months.

At first my doctor just told me that it was a viral infection and told me just to take things easy. It did help as i thought i had 'recovered', however i took ill again only worse and finally i got admitted into hospital. I was in one hospital for 1 week and then got referred to another hospital for also 1 week in which i was then told i had AOSD.

I was put on prednisolone and diclofenic sodium which helped greatly. I have now been off the prednisolone for about 3 months and only on the diclofenic.

Again i am so happy to have found this forum

Gemma x

Rebekah

Hey Gemma,

It is really nice to know there are other people out there with the same thing! It was such a shock being told I had stills, and then when I asked my doctors what it was I was told they didn't really know! I have been looking through the internet for advice but nothing seems very positive!

Like you I was ill for about 6 months being told it was everything from tonsillitis to cystitis! I was like its not that!! I found it really hard to get doctors to listen to all of my symptoms they would just go, oh a rash lets get you some piriton.... Finally my dad stepped in and told them I was not leaving hospital until they had diagnosed me! (this involved a trip from uni in Newcastle back to Kent!)

I might speak to my doc about this dicofenic sodium, does it have any side effects, the Methatrexate is making me pretty sick, and I have started loosing my hair!

Rebekah x

Rebekah

Hey Carol,

I am so happy to hear that it is not the end! I found a facebook group for Stills disease and was absolutely terrified by the responses on there. Everyone seemed to think it was best to keep it to yourself and I found that really strange. All my uni friends are aware of my condition now and have been absolutely fantastic about the whole thing.

It’s really nice to find people with the same thing! My sister refers to it as my “fake disease” as when she came home from university I had somewhat recovered from how bad I was, and was able to do a pretty normal day, even though I was going to bed at 9pm!

I have had a look at Laura’s blog, I have found out quite a lot! I am pretty interested in trying a different medication as the methatrexate is giving me some horrible side effects, mainly losing my hair which is quite upsetting! I am about to see a new Rheumatologist when my uni GP sorts it out for me, since I was diagnosed back in Kent. It was a bit of a shock when I was at home and my dad kind of took over with dealing with questions back there so I am hoping in seeing a new Rheumatologist I can fire away with my questions and what I would like to know, rather than what my dad thought I needed to know.

Thanks everso much my friends are being fantastic but I am terrified of letting them know just how much of an impact it is going to have. I think it’s the facebook group that has scared me more as a lot of them have said they have lost friends to the disease because they got bored of having to deal with it on a day to day basis. I have found Laura on twitter so I shall tweet her soon!

Thanks, I think judging on how well the last one went I am going to be needing all the luck in the world! Hope all is well with you x

gems907

I know Rebekah it was really frustrating with the doctor telling me one thing and i was like NO it's something else!! I was told i had an allergic reaction, viral infection and then hepatitis! I just knew it was something more serious!

Im glad now that i have a rheumatologist and on my last visit he said that he might put me on methatrexate but he wants to see how i can cope on just the diclofenic. Now the diclofenic is not a steriod it is an anit-inflammatory. It has been working well until a few weeks ago, the rash has started to come back and is getting worse day by day. I am just waiting now to hear back from my rheumatologist to see whats going to happen next.

I am a bit worried about the methatrexate. So sorry to hear that your hair is starting to fall out.

Gemma x

Also there is no side effects with the diclofenic not that i am aware off.

Rebekah

When I was in hospital I had a different diagnosis every day! [My little brother absolutely loved this, as I would ring home tell him what it was he would pop on to NHS direct, come to visit me in the evening with the print out see my consultant and tell them that they were wrong and should try again! I had everything from Chrones to Lupus!] One on my consultants suggested I see a dermatologist because I was clearly alergic to something! Me and my housemates thought at one point we had cracked it with body wash that had the same colourant in it as a bubble bath I was allergic to at three.

I was told it was hepititus at one point, and then it just got worse and worse my bloods came back clear. I was also told it was glandular fever, but tests came back negative, only to then be told that that didn't mean anything and I could still have it!

At one point I had fevers of 42 and was hullcianting like a crazy person. I was seeing seven of my dad and when he told me he needed to go and pick my brother up from cricket I remember asking why all 7 of him needed to go, couldn't he leave one of them here with me. At that point I was taken straight back to hospital!

I found that taking piriton did help with the rash even if it didn't with the joint pain. Sorry to hear that the rash is back! The Methatrexate has started getting better, and other than the hair loss it has been ok. It has taken about 8 weeks to settle down, the first time I took it I was out for the next few days completely out of it. I reccomend starting it on a friday so at least if you are out its the weekend you loose initially. Other than that its not too bad, the hair loss thing seems to be very much dependant on the person. I have gotten used to the idea of being bald now. I have decided its all about rocking out a turban with some funky broaches! My friends have also made me a group on facebook for ideas of what to do with my bald head! So far they are smoothing me in vasaline sprinkling glitter over it and making me into a disco ball!

Rebekah x

Carol79

Hello!

Gemma its great to meet you, albeit virtually. I'm so pleased that this forum is bringing a bit of emotional help to us lot, its clearly good to be able to talk about it. I didn't know there was a Facebook page!! Going to check it out. If its rubbish, knowing me, I'll probably try to set up a competitive forum! I can see why friends can't cope with it sometimes but on the other that surely means they aren't much good at being friends in the first place. My mates have been very supportive thank god, but I know I've found it frustrating that they can't fully understand. Still, it helped when I was pregnant and didn't want to tell anyone the real reason why I wasn't drinking -I just blamed it on Still's!

Just had a couple of thoughts about the diclofenac - I was put on it when they didn't know what was wrong with me, and I used it successfully for about a week until it basicaly stopped working. I think it is perhaps good as a support act if you have a really bad day with the stiff joints (like you said Gemma its just an anti-inflamatory, like a very strong ibuprofen), but I doubt it will help tremendously in the long term. Methotraxate is the one my doctors want me to try once I've had my baby, but I'm not hearing very positive things about it. It's also worth bearing in mind that metho can really mess up your cycle - hence why I couldn't try it before as I was trying for a baby - so you may struggle with your periods on it.

The one I'm going to push for is Anakinra. I know Laura hasn't had much luck with it but my first rheumatologist (who by the way is fantastic and is based in manchester Rebekah so not as far as Kent, perhaps he'd be a god one to try? He's private so not cheap but he's very interested and has been happy to be answering my questions by phone or by mail at no charge so far - I'll pass on his details when I find them) said he'd heard very positive things about the first trials of it.

The other thing to try on the rash is... good old calamine lotion! When I first had Still's it was the only thing that got it under control. I did have to literally bathe in it for a week but it worked. Such an old fashioned idea but who knew!! I've not had a major outbreak of it since, but then I'm a bit of a weird case as I've basically been either pregnant or breastfeeding since having Still's so I think my body is not a good judge of anything.

Anyway let's all keep in touch, I think this is great and its wonderful to have contact with you all. XXX

Rebekah

Hello!

It might be quite good if you are accustomed to the disease but I found it quite daunting, everyone was moaning about having a bad day, and I realise we all have them and with this disease a bad day will be a terrible day, but it just scared me! I see your point, realistically I don’t think I can see them abandoning me because I am ill, but it was just a huge shock to see people suggesting that it would happen! Mine seem to have this belief that I will recover fully and be back to normal, and really don’t like being told that that is unlikely, which is a little frustrating.

I might speak to my doctors about it anyway as pain killers seem to have lost their effect. Methotrexate is a pretty horrible drug, plus there is all the bloodtests along side it, (which for me have been weekly as my Alk Phos is so screwed up!) there is the folic acid you need to take, and frankly my nails have never been in such good condition! So silver lining! One of the big selling points to me was that it might stop periods, having being taken off the pill because of my Alk Phos levels it was really annoying to going back to having them, no such luck. I was a bit worried with methotrexate as there is the potential for infertility, although apparently its rare – but then again so are all of us!

I was watching a video about a guy that uses Kineret, though thats in America, I have had a google but have no idea if it is lisenced in the UK. Oh that would be fantastic I would love the details when you get a chance! I feel quite weird being treated by people that have only seen one or two cases of stills, which I guess is the nature of the disease, but I often feel that I probably know more now through googling than those treating me!

I second the calamine lotion! You can get it in a bubble bath which I found pretty helpful, I got it in the big boots in town, also aqueanous (can’t spell that) cream is what they gave me in hospital for it, and it was really soothing!

xx

gems907

Hi

Same Carol it's great to meet you. My family and friends have been great even though they dont fully understand. My brother and sisters joke from time to time that im not really ill and that im putting it on!! At first it used to annoy me now its an ongoing joke between us and keeps me in good spirits! Also my work colleagues have been fantastic, knowing that some days i just wont be able to do much.

Im due to see my rheumatologist in the next month so im gonna say to him about the Anakinra and also talk more about the methatrexate.

Keep well

Gemma xx

Colin1

What a great site, glad you met up with a fellow sufferer
but sorry your ill.
Colin

Carol79

Rebekah - great tip about the bubble bath calamine lotion! Will get my hands on some for sure. And don't be disheartened about you never recovering - from what I understand, most Still's sufferers do beat it in the end, it just can vary greatly how long it takes. I was told about 20% of sufferers literally have it once, get it under control and then it never comes back - now I don't wish to get your hopes up as I know most of us on here are sadly not in that 20% but the outlook is not bleak, it's just going to take us longer. And in the meantime, the way I see it, there is always wine!!

Will try to find out more about Anakinra when I next see my rheumatologist, which isn't for another few months. I'm expected to give birth in early December and we are all waiting to see what the Still's will do then before making any decision about drugs to try. Certainly though my doc had told me originally when I got it that I should push for it. I believe it is extremely expensive however and in which case the NHS will only pay for it if you have tried everything else - good case for going private if you can afford it. X