NRAS Logo
Logged in as: pedro-pmc Search | Moderate | Active Topics | My Profile | Members | Logout

2 Pages <12
New Topic Post Reply
hello everyone Options
FIONA752
#21 Posted : Saturday, February 05, 2011 7:16:28 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 312
Hi Sally,
I'm Fiona, 53 and diagnosed with R.A at 38.
I take Hydroxychloriquine.
You will find many friends here who will
understand what you are going through.
Best wishes,
FionaSmile
jenni_b
#22 Posted : Sunday, February 06, 2011 6:09:58 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
hi and welcome from me too sally!

I am Jenni, 35 married with 3 children ranging from 15-3yrs.

Got severe RA, I had the cimzia last summer. It really did tackle the RA well, couldnt take it long term in the end due to side effects. Pleased you are on an even keel now.

Looking forward to reading more posts from youSmile
how to be a velvet bulldoser
sally-T
#23 Posted : Sunday, February 06, 2011 9:22:08 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 2/2/2011
Posts: 31
hi Fiona & Jenni

Jenni, do you mind if I ask what side effects you got with Cimzia? What are you taking now?

I've only just started Cimzia and felt serious fatigue for two days after my first injection. Don't know if that is coincidence. I'm taking prednisilone as well and tried to drop that down this week but couldn't manage. I cooked dinner for friends last night for the first time in ages and was shocked at how much pain I was in and how exhausting I found it. They were great though, and helped with everything including the washing up and it was lovely to have people around again. How on earth do all of you with children manage? It must be hard.
xx

jenni_b
#24 Posted : Wednesday, February 09, 2011 1:54:16 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
hi my guess is that the lower dose of pred is the problem.

you have to be ever so careful reducing the level of steroid, it has to be done slowly (VERY slowly).

The cimzia can take a while to work- for me, the anti-tnfs are almost always instant in their effect, within a couple of days I feel much better.

Everyone is different with this disease. I have severe, sero positive, anti ccp positive systemic disease. I have complex immune disorder (fibro, costo, scleroderma etc etc) to go with it but in reality it is all the immune system going wrong and eating different bits of me! Plus the damage of the steroids on the endocrine system

I MUST BE TASTY!Tongue

lolBigGrin

for me I felt very hung over for a day or so, slept a lot.
Otherwise so so much brighter.

within a month, the neurological problems started, I started with the neuro probs following another drug reaction to another drug (retuximab) but all of a sudden the neuro things escalated and I had facial drop, couldnt feel largening areas of skin etc. I wont bore you with more.... I had an MRI or 2 and and LP. Upshot no more cimzia.

No more drug options really, they have signed me up for abatacept- having vowed I wouldnt risk any more drugs I have reluctantly decided to give it a chance. The risks are high for me. but not doing anything when crippled in agony is no way ahead either, 3 children, a husband and being 35 sharpens your mind somewhat on these things.

That decision was made in sept. no funding or forward progress with the abatacept. no treatment currently.

Ah the joys of RA....

Jenni xx


how to be a velvet bulldoser
LynW
#25 Posted : Wednesday, February 09, 2011 7:52:24 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Sally

I'm not on Cimzia, I'm on Enbrel but also take prednisolone. As Jenni says the likely problem is the prednisolone. It really does have to be reduced extremely slowly!

I'm on a maintenance dose of 3mg and I can't get below that, my body goes into immediate freefall and a flare follows right behind. I have been on high doses in the past but reduction has to be very gradual indeed. Also, at the start of the anti tnf treatment the body has to adjust and it seems quite common for people to feel fatigue after the first few doses. Your body does adapt though and you will start to improve. I would be inclined to stick with your regular dose of prednisolone until the Cimzia fully kicks in and the rheumatologist gives the go ahead.

As for kids, I had three within 16 months making four under six and severe uncontrolled RA (except when I was pregnant)!! You just get on with things as best you are able ... I read to them a lot, played lots of games, slept when they did, and basically coped. You just do :)

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Users browsing this topic
2 Pages <12
New Topic Post Reply
Forum Jump  
You can post new topics in this forum.
You can reply to topics in this forum.
You cannot delete your posts in this forum.
You can edit your posts in this forum.
You cannot create polls in this forum.
You cannot vote in polls in this forum.

SoClean Theme By Jaben Cargman (Tiny Gecko)
Powered by YAF 1.9.3 | YAF © 2003-2009, Yet Another Forum.NET
This page was generated in 0.122 seconds.