Anyone out there with Adult Onset Still's Disease?

Carol79

Hi Gemma! Very quick reply I know but I'm online and it's rare these days so thought I'd just reply here and now. Good to hear from you anyway and glad to hear the metho is doing well. Regards itchy creams, I had a steriodal cream from my GP that helped slightly, but I'm not sure you could use it with the metho. The old fashioned remedies might be worth a go: calamine lotion or E45 itch relief cream, both can be bought in Boots and are external only so shouldn't be a problem with the metho. Alternatively have you asked your rheumo if you could use simple antihistamines? C X

gems907

Hey Carol

Yea i have tried E45 but it was no use. Didn't even think of calomine lotion so il try it. I have been trying a new cream called Eurax for the past week and it hasn't been too bad so far, not as much itching. Due to go back to see my rheumy next month so i'll ask him as well.

Hope you are keeping well?

Thanks

Gemma x

hjayne

Hello

I was diagnosed with AOSD when i was 18 and I was told that I am the worst case they have seen in over 8 years. Its been just over two years now and im finally getting back to myself and getting this disease under control with the medication.

I have only just come across this site now and would like to talk to other people who have the same condition as me to talk about what they have gone through, as you will know you can explain to people whats going on but they have no idea.

Im also going to Australia at christmas time and I plan to climb the Sydney harbour bridge ( i just hope im not having a bad day) to face my fear of heights and feel its a great opportunity to raise money for charity,
is there a charity just for stills disease?? if anybody can help that would be great.

Holly

stickywicket

Hello Holly. Welcome to the forum.

Mine is officially Stills Disease (I was diagnosed at 15 having had a couple of bouts of what, in those days, they put down to 'rheumatic fever' beforehand. So, not Adult Onset but close )

I don't think there are many on here with Stills. I just regard mine as RA these days and there are plenty with that. I did google it, however and found http://www.stillsdisease.org/ which you might find interesting.

You'll have noticed that this is an old thread and I don't remember seeing any of the contributors around recently. Hopefully, this means they are all well and getting on with life.

I wish you well for the Australia venture.

elnafinn

Hi Holly

Good for you for finding this thread on the forum. I am so pleased for you that you are at last starting to get your life back on track with the help of medication dampening down the symptoms. Wow, you sound ambitious taking on that climb in Australia come christmas time.

I believe, there is not a charity in the UK that supports AODS on its own but it does come under the Arthritis Care umbrella. There is one in America though, I believe. You could ask the helplines, number at top of the page if you wished.

I wish you well and that you continue to go from strength to strength.

Elna x

Carol79

Hi Holly, and everyone else, great to hear from you all. No I don't think there is a charity as such, and to be honest I'm not sure the American society still exists - I've tried to contact them on many an occasion and have had no response. So I wouldn't think it a good use of your money, much as I totally applaud what you are doing. Arthritis Care is probably your best bet anyway as they are the guys leading the research in the UK.

My Still's is currently quite manageable. I've had it for four years now but I'm currently breastfeeding my little 4 month old and that seems to keep it in check. I am only contending with a slight rash on most evenings and the stiff joints are manageable with ibuprofen alone. I've been planning a new website for fellow Still's sufferers but tis been somewhat overtaken by my children at the moment. When it comes online I shall be sure to let you know!

All the best of luck with your climb! X

stickywicket

Carol79 wrote:

My Still's is currently quite manageable. I've had it for four years now but I'm currently breastfeeding my little 4 month old and that seems to keep it in check.

That's such good news, Carol. I'd to give up on breast feeding far too early - the younger one virtually only got the colostrum - because I was almost rigid and had to go back on the meds. Well done you!

Carol79

Wow that's interesting - I assumed everyone would have the same response as I do, as this has happened twice now that pregnancy or breastfeeding keeps the symptoms away. I've also been considering whether therefore the birth control pill also helps, as I was much more responsive to the meds when taking that than when I wasn't. So your experiences have me perplexed again - good old Still's eh? Just when you think you've figured it out it goes and changes again!! X

stickywicket

I don't remember the birth control pill helping at all but I'm going back a long way now and they're probably different today. I do remember getting very excited with my first pregnancy and the RA disappearing. We began to calculate how many kids we'd produce if I aimed to remain pregnant for the rest of my childbearing years :shock: Then he was born and it immediately got a lot more complicated. Plus, his brother didn't oblige and I had a tough 9 months. So, just the two I'm glad the breastfeeding's helping you though. How lovely! I really enjoyed it.

Carol79

Hah - yes my doctor also joked that perhaps I should just continue having children since that seems to be the best treatment for me. I seem to recall giving him a withering look and reminding him that he's never been the one being pregnant/looking after children! Sometimes I'd rather have the Still's! (admittedly, not often...). Take care X

heatherbignold

Hi,

Haven't posted for a while, but am after some info...... thanks!

My husband is a sufferer of AOSD and has now tried (unsuccessfully) Embrel, Rituximab and Tocilizumab. He is still injecting methatrexate weekly and is now on 20mg of prednis daily. His consultant has now suggested cyclophosamide and we just wondered if anyone else had tried it and how they had got on.

Many thanks - best wishes to everyone else out there!!

Heather

stickywicket

Hi Heather. I'm sorry I can't help with this. I'm one of the lucky ones that meth works well for on its own.

However, I'd suggest that you start a new thread, maybe entitled simply 'cyclophosamide' as it's a new one on me and I think your post will just get lost on this thread.

I hope you can get some answers.

heatherbignold

thanks - good idea!

gems907

Hi all

Hvent been on here in a while so i hope everyone is keeping well. Methotrexate is doing well for me hvent had any flare ups or joint pains since ive been on it from last september!! In fact i have been doing so well that i am going to Australia in August for a year!! I just thought there is no point in wasting my life wondering if and when im going to have a flare up and not get the chance to follow my dreams!

Stay positive everyone

Gemma xx

Carol79

Well done Gemma, that's fabulous! X

stickywicket

Bumped up for newbie.

em78

Hello Carol/everyone,

I am 33 years old and have had Stills for over a decade. My story is much the same as yours. I was diagnosed immediately following my honeymoon as I was admitted to hospital for 2 weeks.

I have a 4 week old newborn. I am currently breastfeeding.

Since the birth I have been having a mild - moderate flare which gets worse at night, especially yesterday when I forgot to take my meds due to all the hurly burly of having a newborn. Last night my arms hurt so much that I have to prop them up when feeding the baby. I also get sweats when feeding her.

I took Azathioprine and prednisolone throughout pregnancy as I was advised in a joint rheumatology/obstetric clinic. Before getting pregnant I had elevated prolactin levels which seemed to be associated with stills somehow. It took a while to conceive due to this. It makes sense now that I am breastfeeding that I should have a flare. Also, I have a very sensitive inflammation response and I am recovering from a C-section so I was expecting this one.

I live in the UK and am treated under the NHS.



My question is... Were you AND the baby considered together as patients? My baby has been in discomfort for the last few days, is showing signs of reflux and has baby acne. We are taking her to the doctors today. I hope it's not my meds or my inflammation getting through to her.

Thanks for posting your experiences on this forum... Itsbeen really helpful reading about similar experiences.

Hope you are well,

Emily

Carol79

Hi Emily,

Good to hear from you though my heart goes out to you. Dealing with a newborn isn't easy at the best of times so its terribly sad you are struggling with the Stills as well. I hope that beneath it all you are able to enjoy your baby anyway - and well done you for breastfeeding despite it all! You must be a secret superwoman! ;-)

In answer to your question, no, neither of my children have been considered as patients - either because I have had so little by way of symptoms since I started having a family or more likely because I don't think there is any evidence to suggest Still's can be passed on genetically. Of course as a mum you must follow your gut instinct and get your little one checked out if you are worried, but it might help if I tell you that my first baby also had awful infant acne and reflux and it was about 4 weeks in that she showed signs of that. Of course she is absolutely fine now. Most of the babies I know have had some difficulties like that, its very common. But I understand your worries in view of the medication you are taking. I took prednisalone for about 3 months whilst breastfeeding her, just a low dose of 20mg a day was all that was allowed. I didn't enjoy taking the risk and you must of course listen to your doctors, but she is absolutely fine.

Keep in touch - you are going through the most difficult part of motherhood and dealing with Still's as well which is horrendous, so if you ever need to moan just please do! I really genuinely feel for you. It will get easier soon I promise!!

All the best,

Carol

em78

Thanks very much for your encouraging reply. It really helped.

I don't feel like a supermum but it gives me a big massive boost that I have someone dependent on me. It was weird cos I have some kind of remission whilst pregnant and felt great but as soon as I was being wheeled out of theatre from the c section I had the doctors telling me I had a rash. It was that quick! I felt so good when pregnant that i was hoping to reduce the meds for the long term. Funny how stills has a way of reminding you it is still lurking.

I am feeling a lot better now I have got back on track with the meds. Remarkably the baby too seems to be in better spirits.

Sometimes with Stills I need to kick myself up the backside to take control again!

You have done really well with 2 children, must have been hard work. There is not a lot of data in the uk for pregnant/new mums with Stills. I only found 1 study with 9 candidates! I was treated in the general rheumatology area when pregnant and that's very different from Stills!

I hope you got/are getting the support you needed and that the Stills keeps at bay for you.

Thank you again for your reply, I am massively grateful,

Emily

Carol79

Hi Emily,

Good to hear you sounding more positive. Not that there is anything wrong in being a bit down sometimes, we all need a good moan from time to time and, as my little one is only 5 months old, I recall all too vividly what those first few weeks are like. Plus your hormones are all over the place and you are getting no sleep - so forgive yourself for not "taking control" of the still's right now! Weird to hear about your rash reappearing so soon. Mine took a few weeks after both of my children. It's been well behaved this time though, so far only a few evenings of rash and small areas, and so far (touch wood) no joint pain. I am trying not to get my hopes up, we shall see what happens when I give up the breastfeeding. My little boy got his first tooth last week so that may be sooner than planned!

Always here if you need a boost,

Carol

stacy458

i dont know if tis page is still active but i was diagnosed last year but had complications before they gave me the diagnosis i would like to talk if you still here..

dreamdaisy

Hello, judging by the time lapse those who were posting on this thread haven't been around for a while but some of us still are - and one in particular may be able to help. Come and talk to us, stacy458, begin your own thread and hopefully you will garner some replies. DD

Carol79

Hi there,

I'm still here, I get a notification email every time someone posts something on here so it's always worth trying to chat. Also I'm starting up a patients' association for adults with Still's Disease with my rheumatologist (I've been trying to do it for ages but I had a baby a few months ago which has put everything on hold, but the website is in creation!)

What would you like to ask?

All the best,

Carol

em78

I'm still here too.

Carol, let me know if you need help with that.

Hope all is well with everyone x

stacy458

Hi all I'm glad there are still people on this page. Atm I am going away from a flare up but my symptoms don't completely go away. I was just wondering if anyone has experienced trouble focusing anf fatigue for me this is happening.