Nice to see this here

[scaryteacher]

Great to see that there is a section for those with auto immune disease; it feels quite lonely having one sometimes.

[HappyFlappy]

Sjogren's Syndrome here!

[HappyFlappy]

[redannie118]

Hi happy flappy hope you're OK:)

[JessicaEccles]

Scleroderma, recently diagnosed with RA, fibromyalgia. Also just spent 3 months on methotraxte - which did FK ALL- now waiting to be considered for biologics. feeling very very old and tired at the moment...

[Booboobedoo]

Pulmonary sarcoidosis, asthma, excsma, crazy neutropenia & low platelet count plus hay fever every summer.

Living the dream.

[redannie118]

JessicaEccles I've been on methotrexate over a year with not much luck. Can I ask if your scleroderma is limited or diffuse? And what biologics is (not one I've heard of) feel free to pm if you prefer:)

[Ollivander84]

Ooh another neutropenic! < waves at Boo >

[JessicaEccles]

redannie

I have diffuse scleroderma- and it does feel like it is everywhere at the moment. My lovely consultant is looking at possibly Rituximab- or Humira (?sp) if my heart/ lung results are ok.

Methotreaxte was very annoying- I just had bad diarrhea, and no other reduction in symptoms. I am also on Plaquenil- but the only things that really work are steroids- which make me fat and grumpy

[Cockadoodle]

Hey! Looks like I've found my people!

Hi exWife - I have PSa or RA my rhuemy can't make his mind up. Im 42 and I've been taking Methotrexate for a few months now. Its great. I don't really have any side effects (sometimes a little sicky). I AM feeling better. I no longer need to wake up 1/2 an hour to an hour before getting up to take more pain killers (co-codamol 30/500 and diclofenac) and can get up, dressed and downstairs before I need it. I was also regularly taking an "extra" fourth dose of diclofenac but have mostly managed to stop that too. I'm not doing cartwheels but am mostly walking a lot better. I'm seeing my rhematologist in a fortnight and hoping he'll put my dose up. Also my rhuemy nurse wants me to start on the injections. I'm advised that this is like having another dose up still. So its not as scary as I was anticipating but I'm getting there and feeling better slowly.

Good to see this section - I frequently want to touch base with others in the same boat! :)

[redannie118]

Thank Jessica I have limited , I have heard of rituximab , I'm going to see my Rheumatologist next week so will mention it to her. Hope it works for you :)

[exWifebeginsat40]

i'm starting the methotrexate in a week or so. i'm going to call it meth for the looks on people's faces.

i've had 5 or 6 knee surgeries and need a new one but they're making me wait. apparently i've been 'double jointed' my whole life but parents didn't care about illness or anything so i never had it checked.

so far, apart from my knees, i have erosion in my neck, ankles and back. my hands are full of inflamma and lit up like Blackpool on the ultrasound. what larks!

[exWifebeginsat40]

inflammation, i mean..

[Okite]

Hello! Glad we have this topic now. I have PA and palindromic rheumatism. I saw a mention of hypermobility upthread, I hadn't actually realised that was an autoimmune thing, my DD has that. 😒

[Launderetta]

Morning all,
Lovely to be here with such special people!
I'm enjoying Hypopituitarism with a side order of CFS & Fibro plus a tasty amuse bouche of perimenopause. Makes for something to get my teeth into!

[Roystonv]

Just psoriasis here, ds too so sending good wishes to all you brave, battling people. Mine started at about 32, ds at 19 - his confidence plummeted, no family history. Would love to know what turns the 'switch' on out of the blue in these illnesses.

[Launderetta]

PS Forgot about Hashimotos & secondary Addison's. Dont they sound better with a proper Doctor's name?!

[scaryteacher]

I have immune thrombocytopenia purpurae (ITP) which means I have a low platelet count. Have managed 21 years without meds for which I am very grateful, but I do get very tired, bruised and get a lovely rash up my legs when my platelets are low.

[Ekphrasis]

Ooh finally! I asked a few times for this!

[Coffeethrowtrampbitch]

Great to have this topic, hello everyone!

I've got something which looks like neurological sarcoidosis but wasn't confirmed by biopsy.

I've had methotrexate too, it didn't have any side effects even at a high dose but unfortunately it didn't work for me. Hope it works for you exwife.

I'm on Infliximab and a low dose of steroids now, but finding myself very anxious and low on energy as a side effect. Is anyone else taking Infliximab, and how does it make you feel?

[exWifebeginsat40]

my alternative at this point is the sulfur based one that makes you cry poisoned yellow tears. i don't feel ready for that, yet..

[HappyFlappy]

the sulfur based one that makes you cry poisoned yellow tears

WOW!

That sounds impressive (and diabolic!)

I'm currently in the throes of a chest infection and shingles (again!). I have awful recurrent shingles and wondered if I was just unlucky or whether it is linked in some way to the Sjogren's? I know my skin has become very dry and I look like a lizard in mid-slough most of the time.

Obviously when I'm unwell in any way, shape or form my resistance is lowered so I suspect that all the resident nasties come creeping out, blinking at the light once again.

I do have emergency weapons-grade antibiotics for the shingles because I get it on my face and in additional to being bloody painful and hideously disfiguring ( - as though dogs don't attack me in the streets even on a good day if I'm out without make-up!) if it gets into my eyes or ears it could affect my sight or hearing. TBH the bit I find most upsetting is that I can't take my moustache off when I have a shingles flare-up. Usually by the time it is under control I look like a wolf-woman .

[AuldHeathen]

HappyFlappy, you have my sympathy. I had shingles on my face and couldn't get my moustache threaded. I had shingles before too, while I was on steroids. It was very mild and on my elbow . All I have now is some tingling on the face/eye area when tired. I hope it never develops again.

[HappyFlappy]

Thank you Heathen

I wouldn't wish it on anyone, but it's good not to be alone with the skin of an exemic komodo dragon and the facial hair of Brian Blessed .

[Cockadoodle]

Exwife. It's odd I was really nervous about starting methotrexate but wasn't at all with sulphasalizine. I was allergic to it so that knocked that one on the head.....

Happy - you poor thing a chest infection AND shingles... ghastly. Hope you feel better soon

[zen1]

Popping in to say hi! I am on my third AI disease, having had Graves in my 20s (which burnt itself out), I now have hypothyroidism and pernicious anaemia. Also get loads of random pains as well, which I'm not sure whether they're autoimmune related or not.