Advice on Anakinra injection please

[enaid]

Hi daughter now taking Anakinra injections daily and methatrexate 25mg injection once per week..when do you think she will come off steroids? Been on. THem since November and has a lot of weight gain which gets her down at 19! Also big red wheals at injection site for anakinra..any one else been on this with this side effect?

[Hidden]

dont know your location,?? I ASSUME NOT uk? it isnt routinely used in UK as it hasnt got "NICE" APPROVAL for RA

[enaid]

Daughter has adult stills which falls between RA and lupus .very rare 1 in 100000 get it ...has acute flare since July 2012 and was very unwell. I am in England and this is off licence for her as it has had some good results with the extremely small studies that have been done.

She has systemic illness affecting heart and lungs and the inflammatory side which affects her joints as in RA.

She has actually improved on Anakinra and is coping much better now...heading on holiday with boyfriend which we couldn't have seen in the last few months

Only downside is it stings and has red wheals which we are now taking anti histamine.

Advised by specialist nurse to use this site for support as no other adults around with condition ....some adults have had Jia but this is sadly different

Hope I'm not as clear as mud and you don't mind us using this site as she hasn't got "true" Ra .life can be lonely with such rare disorder and you all help each other so much xx

[earthwitch]

If she has been on steroids for a while, then she will need to come off them very slowly to avoid possible adrenal problems. Defiinitely ask the specialist nurse or rheumatologist some strong questions about when she can start decreasing, and how slowly it will need to be done. It should be OK to start decreasing as soon as its clear that the other meds are starting to have a positive effect, but it needs to be done slowly enough that she doesn't notice a bad rebound of symptoms.

Does she ice the injection site before doing it? Not had experience myself, but I believe that can help, as does making sure the injection is taken out of the fridge enough in advance that it comes closer to room temperature before injection - the injections only really need to be kept in the fridge for long term storage - I'm sure that bringing it to room temperature just before using isn't going to affect it negatively, but you can check that with the manufacturer if you need to . They usually have an email for that kind of question.

[enaid in reply to earthwitch]

thankyou so much fo your advice.we take it out of the fridge 30 minutes before injecting and this brings it up to body temp . applying a cold pad just before and possibly after may help with the red weals so my daughter will give this a go . my daughter feels the Anakinra stings a lot more than the methatrexate she injects once per week.the rotten thing about Anakinra is it is daily so stings each day -the leveler to this is it is better than the condition in a flare as you all know so well.

will have the conversation when we are next at hospital in a weeks time x

[ramb]

Hi

My son is also 19 years old and was diagnosed with stills disease/JIA 3 years ago. His symptoms started around his 16th Birthday. He was very poorly initially though is doing quite well on methotrexate. He was on 25mg and then went down to 10mg but is back up to 20mg. His blood tests are normal though he had an MRI scan which showed mild inflammation in some joints.

He was initially injecting methotrexate but developed a bit of a needle phobia so now has methotrexate orally. I do sympathise as it must be unpleasant for your daughter having daily injections that sting.

[enaid]

Hi ramb

Thankyou for posting .it is nice to talk to another mum as friends with healthy kids don't understand how her life has changed.D was diagnosed last nov at age 18. I tried to get her in transitional care as feel a teenager has different difficulties t Han fully fledged adults.however JIA is diagnosed up to age16 and D was 18 therefore went through infectious diseases while. Initially unwell and finally got to rheumatology hence diagnosis in november of Adult Stills.difficulty we are having is she isn't one thing or another and watching her is quite distressing!brighter note to end with she has improved with Anakinra but is on such a cocktail I worry about her long term condition.

Your son sounds as if he is now getting this under control...is he enjoying a normal teenage life and how does he cope with alcohol restriction,?xxxx

[ramb in reply to enaid]

Hi, My son took his Gcses only a matter of weeks after his hospitalisation while on large doses of steroids and was very disappointed with his results (though we were just worried about him becoming well!!. He put on over 2 stone in weight, and then slowly isolated himself from friends. To start with I think this was because he struggled to do the things that his friends were doing due to pain and discomfort, and then seemed to lose confidence. I think initially we had better care due to the age he became unwell. He is luckily that the methotrexate is working quite well. If you saw him he looks like a strong healthy young man, and is now very slim as is no longer on steroids. As for alcohol, that is a constant worry to me. For the main part he had not been drinking any, other than intermittently, but now has left home for the Summer. The hospital have been very liberal about this and just say do not binge drink and stick to the amount of units encouraged for alllhealthy men, and that the blood tests he has will pick up a problem. The problem here is that he thinks the hospital do not think alcohol drinking is a problem. As a mother I think 2 monthly blood tests are not going to save his liver if he has develops a problem, and I would prefer him not to drink alcohol at all!

I like you worry about the long term especially as the hospital just say that his current joint discomfort is mechanical-yet when we had the Mri it showed inflammation. I guess I have read that with Stills some people get joint destruction even with normal blood results.

He is very happy at the moment and is very active. Hope your daughter enjoys her holiday. I would love to keep in touch as like you say it is difficult to find someone of a similar age with the same type of illness. Is there a way of keeping in touch by email on this site.

[enaid in reply to ramb]

Hi it would be great to email directly as I am conscious I am discussing daughter.I am not sure how we go about this...perhaps someone who is used to the site will point us in the right direction.

You seem to have the same issues as us ..the weight gain with steroids really get her own and trying to limit alcohol without her feeling she can't socialise is hard.She has a fab boyfriend who is full of fun and his helps.

D has just finished 1st year of uni and had to defer some exams and this is hard..I hope your son has a great summer as he deserves it!

Hope email you when I discover how..thanks for coming forward it really does help x