RA and Addisons

[Hawkeye52]

Not been on for a while, along with RA have now been diagnosed with Addison's, am just getting my head around that, am now on Filtgonib (trial drug) which works well for joints, however I now have to take high doses of Hydrocortisone because my body is only producing tiny amounts of natural steroid, the punches keep coming but refuse to go down (unless I get a basic infection which means ages in hospital)

addisonsdisease.org.uk

Very useful website

Colin

[Sparrowtracks]

Were you on steroids before Addisons?

[Hawkeye52 in reply to Sparrowtracks]

Good question, the answer is yes, however my levels were all untraceable following the ACT test so they are saying that means it could be primary Addisons, am waiting to see Endro so will be interested to see what she thinks.

Thanks for your message

Colin

[Gnarli]

You seem to be in a rotten situation at the moment and I'm sorry for it. I truly hope that the filtgonib helps your joints and that some effective treatment for the Addison's can be found. Wishing you well

[Hawkeye52 in reply to Gnarli]

Thanks so much for your message, I am fighting hard and I am sure you understand that more than most, as to is I will get on top of the Addisons in the same way I did my RA I am less confident, it seems like a slippery problem.

Thanks for your support

Colin

[Barrister]

There are several of us on here with Adrenal Insufficiency and take Hydrocortisone throughout the day. I was diagnosed 18 months ago after going into crisis and feeling like I was going to die. I still have more bad days than good but I’m alive and that’s got to be a plus.

Clemmie

[Hawkeye52]

Clemmie, sorry to hear that and more than most I absolutely understand your issues, for me its been a long road just to get diagnosed as most of the symptoms were attributed to RA, I had two admissions early this year with complications following what I now understand to be an adrenal crisis and like you was expecting a visit from the grim reaper at any point, Even though I am on the Hydrocortisone I am left with constantly feeling feint and exhaustion, my expectations were that these symptoms would ease but no such luck, in terms of work I am hanging by a thread with my brain feeling like its full of cotton wool. I hope for improvement once I get an appointment with my Endro.

Thanks for your message, it means a lot

Colin

[nomoreheels]

Hiya Colin. It is an unfortunate thing but once we have one autoimmune condition we are more likely to collect others, Addison's being one. There are some members here who also have both so like Clemmie maybe they'll be along to share their experiences.

Coincidentally I was reading about Filgotinib yesterday, a new JAK inhibitor. I think it's at phase 2b or 3 of trialling, does seem to have issues regarding therapeutic dose v side effects in RD volunteers though, don't know if you've found that? There's another possible concern only found in males too. Good news that another oral med may not be that far away for those who haven't managed their disease with DMARDs though.

[Hawkeye52]

Hi there, yes like collectors of fine wines and paintings we collect diseases, Addison's is a strange one, kept getting extreme salt cravings and dizziness on getting up and walking upstairs, its a change not to have pain but like RA the exhaustion and fatigue is what gets you.

Yes it has a strange name but so far has been really good for me, have been on the trial for nearly 2 years and have failed on all the anti TNF drugs that the CCG will fund, so this was very much last chance saloon for me and being oral medicine is a winner, however here is the rub, I have a limit of steroid medication which threatens the my place on the trial so its a difficult balance.

What treatment are you on, if you don't mind me asking?

Col