Hello all
Ronnie I hope you read this and are improving, hows the arava going now, it doesnt bother my tummy at all tou should try some meditation if you keep focused and try to think positively and try not to let it affect you then chances and it wont. Im more than likely going to have to go into hospital over the coming days my bowel is bleeding the wreckon its vasculitis too since ive been diagnosed with the small cell vasculitis, Im on 60mg of deltracortil once a day and Ive started on a high protein diet to help with healing the ulcers and keepin myself built up.
Does anyone else with PSA suffer from other autoimmune diseases?? I am very interested in hearing if ye do or if ye have found any treatments particularly good as Im very annoyed although since Im off the MTX(methotrexate) and on the Arava Ive less swelling and morning stiffness.

Hope to hear from ye soon
Chell

Hi everyone

Hi Chell, yes better now leflunomide settling. Joints seem to be easing, thanks for your comments. Does anyone have hair loss on arava (leflunomide)? Does anyone with Psoriatic Arthritis have problems with swelling knuckles and being able to pick things up and grip things? Has anyone been on steroids and leflunomide have you put on weight? I have got swollen and put on one stone, if the steroids wear off will I lose the weight?

Chell, hope you get on ok at hospital, you deserve a break, you have had a lot of problems. Good luck.

Ronnie:wave:

Im on both steroids and arava but since I started the arava and when I was on low dose of steroids 10mgs of deltracortil I had very small appetite and im now on big dose of steroids(60mgs of deltracortil a day) and I'm not really eating although some of that is to do with the pain I'm in as my tummy and bowel are bleeding, Ive been booked in for another colonoscopy and gastroscopy (OGD) for asap and if the bleeding gets much worse ill just have to go to A&E,
I did put on weight when I was on steroids without any DMARDs and also when i was on methotrexate and the steroids now the higher doses make my face moon shaped but thats all im eating less than ever, but the advice i got when I was on steroids and when i felt hungry on them to eat plenty of protein and not binge on junk food and it definately helped to keep at the same weight.

My knuckles are constantly hot and swollen I think its just something arthritis sufferers have to put up with, I did get a special bottle and jar opener from the OT dept and it helps with most things if I dont have someone at home to help.Do you just go on steroids some of the time or have you been on them constantly, Ive been on them constantly since may and I cant seem to get off them and since I was diagnosed with small vessel vasculitis I have to stay on them and anti inflammatory's

Hope to hear from fellow sufferers and you too Ronnie soon
Take care
Chell:)

Has anybody developed other inflammatory diseases as well as their RA or PsA ive small cell vasculitis and i have ulcers all over ive 27 at the moment and I hate them the way they feel look and smell, My bowel surgeon and rheumy also think my bleeding bowel is in some way linked that i may have chrons disease or and ulcerative condition related to the small cell vasculitis(not ulcertive colitis a diff thhing)
Im so fed up with it all I would love to hear from anyone any suggestions or anyone who may be in a similar situation
Bye Bye
Chell xxxxxx

Hi Chell,

Hope you get lots of replies from your question on vasculitis. Sorry to hear you are feeling so fed up. I had a scare last week. Doc put me on Stomach tablets and I slowly went downhill. Last Sunday had a blood clot scare in lung and leg and had hospital on phone as well. Amazingly, stopped the stomach tablets, halved another tablet I was taking and doubled up on the Leflunomide and this week beginning to feel a little more human. Joints painful and swollen and chest still painful, but they feel I have arthritis in my breastbone and my neck which is giving me extra pains. Anyway, I cannot help with your vasculitis, hopefully others will write in, just wanted to say keep your chin up, and get well as soon as possible.

Love Ronnie xx

Hey

My arthritis is flared up I have to get help even just to get dressed ive only one hand i can use im still on antibiotics althouigh the pneumonia is only in my left lung now im still on nebulisers and oxygen as I need them Im on new inhalers they're just out on the market much easier to use. I had my last chest xray thursday and da previous week i had ones done and Id a lung scan to be sure it wasnt my immune system attacking my lung also but good news its just bacterial pneumonia All my doctors trying to get me admitted this week to do a overhaul of treatments etc etc and hopefully get my bowel surgery done if I fail to get a bed and a date for bowel op (sooner than april) then im going to a totally private hospital which will be awkward as my notes are in the other hosps
but my rhuemy and pain docs will b the same i just need a general/bowel surgeon faster than the current one Im seeing as Ive severe abdo pain and there is a lump on my right side which my doctors can feel and Im still having bleeding from my bowel but the surgeon I see is also oncology surgeon so has lots more important ops to do but meanwhile I cant wait until April.
Anyway the reason for telling you all that is they think that my bowel prob the PsA and the ulcers on my skin from the small vessel/cell vasculitis may all be linked, Im not finding any the DMARDs very successful in treating me so it looks like I may be starting biologics soon(Humira) that ill inject every second week and hopefully it may settle everything down.
Have you ever discussed the use of biologics/anti tnf drugs as a treatment option?

Hope to hear from people soon
Let me know what ye have tried esp in regards to the biologics
Chell xxxx

loads of ye guys are reading theses posts please can ye leave comments esp if you have and of the same or similar probs id love to know how yen cope and get a b few tips off people.
Ronnie thanks you always comment hope tour ok
Hope to hear from more people soon

Im off to be admitted to hospital Im after plenty fentanyl (stronger dan morphine)so I am only a bt uncomfortablew now I was in agony since 4am then saw my gp and shes sorting out an admission will let post as soon as I can
they think my arthritis has flared up due to appedicitis so they'll decide later whether im getting my appendics removed.

Take Care guys
chell xxxxxxxxx