Rheumatoid Arthritis

**polkadotgirl** · 23-05-2006, 07:26pm

Bit of a long shot really, but does anybody on Damsels have rheumatoid arthritis? I've had it since I was 11 and although it went into remission during my 20s it now seems to be getting a lot worse, particularly since I had my son. It's centred in my knees, but effects most of my joints and I'm getting worried about my mobility. In the past I've had to use a crutches/ a wheelchair for short periods during the height of flare-ups but now I seem to constantly have huge swollen knees and it's getting harder to keep up with my son and do the basics.

Just wondered if anybody has similar problems or can recommend a good rheumatologist in the South East. Mine isn't very helpful.

xxx

**Inks** · 26-05-2006, 10:32am

Polkadotgirl, sorry no advice for you as I don't have RA but I used to work with a guy who suffered with this and was sometimes in constant pain. Unfortunately I'm not in contact with him any more but good luck with your search for a rheumatologist and wishing you less flare ups

Inks

**polkadotgirl** · 29-05-2006, 10:54pm

Thanks lots Inks

Think I'll have to find a nice, friendly RA forum to try and get a recommendation for a decent rheumatologist.

xxx

**Katoid** · 30-05-2006, 12:00pm

Hi there! I have it, have done on and off since i was 17.. at the moment it seems to be ok touch wood, but i dread the flare ups.. it is so incredibly painful.. What meds are you on? Have you seen the rheumatologist since you had your son?

xxx

**polkadotgirl** · 01-06-2006, 11:14pm

Hi Katoid. Glad you're ok at the moment. Flare-ups suck don't they. Which of your joints are most effected? Are you on medication for it?

So far, meds-wise, other than NSAIDs along with co-codamol I've only tried sulfasalazine. I want to try for another baby before I go on methotrexate. Sulfasalazine wasn't very helpful, so I'm currently waiting to have having ultrasound aspiration on both my knees and cortisone injections again. Problem is that my rheumatologist is reluctant to use this as a temporary form of treatment, but won't really explain why. I've seen him once since I've had my son, but my most recent appt was rescheduled (for September!) I want to see a different rheumatologist just to try and get a second opinion on the best way of treating it now bearing in mind that I'd like another baby and to talk about a long-term approach. Anyway, thanks lots for your reply and hope you stay free of flare-ups.

xxx

**bouncingtigger** · 06-03-2007, 06:36pm

Hi ya...

Sorry for dragging this up from the depths of beyond but didn't want to start a new thread...

Just wanted to say hi and I have juvenile idiopathic arthritis which I was born with... and although I live in Midlands, I used to live in South East and still see the same rheumy (altho I'm hoping you've found a decent one after all this time!)

My arthritis has been in remission since 1987 and over the years I've been on nsaids, steroids (inc gold), sulphasalazine and methotrexate.... I am now off all my medication as I want to try for a baby and so far arthurs behaving himself...

Anyway, hope some of you are around and hope to natter with you soon...

**polkadotgirl** · 06-03-2007, 11:50pm

Hi BT. Thanks for replying especially after all this time. My son is in hospital at the moment, and looks like he'll be in until the weekend at least, so I haven't got much time to write, but as soon as we're both home properly again can I pm you about your rheumy?

Glad your arthritis is behaving itself. Mine is under control at the mo thanks to getting my knees drained and steroid shots back in August, but I don't think it's fully in remission.

I've just started ttc again. My arthritis completely disappeared during pregnancy, so I can thoroughly recommend it! When can you start ttc? are the meds out of your system yet?

OK, better scoot because I really need to get some sleep, but would be good to chat to you once my LO is home safe and sound.

x

**bouncingtigger** · 07-03-2007, 08:26am

Hi Polka

Yeah feel free to pm me... Sorry to hear about LO, hope its not too serious and you have him home soon

We started ttc in January... I saw my rheumy last November and she recommended coming off meds... I'd already come off steroids and methotrexate some years ago so I was just on anti-inflammatories. I came off them gradually over the 2 months and to be honest, apart from a little bit more stiffness every now and then, there's not a huge difference...

Chat to you soon...

**Chickpea** · 07-03-2007, 03:14pm

Hi!

I have psoriatic arthritis, so not quite the same but v.similar in many respects. I've struggled with VERY badly swollen knees for years. I've had them drained (once without anaesthetic - which was

I can tell you!) and injected with cortisone more times that I can remember. I've been taking prescription anti inflammatories solidly for about 6 yrs now.

I started taking Humira in the summer of 2004 and it was a miracle, I got my life back effectively, barely any aches and pains. I went on honeymoon to Malaysia and we BACKPACKED - I'd never have been able to do that before, it was totally amazing!

I then fell pregnant spring 2005 (conceived on humira, which was a little worrying).

I stopped taking my anti inflammatories (and of course the humira) in my first trimester and seemed ok, but then suffered with terrible flare ups in my second trimester, and was advised that it'd be more beneficial all round if I carried on taking the anti inflammatories, I was then scanned every two weeks to check on the baby - all was fine. After my daughter was born, I had the most horrendous flare up ever - pretty much ever joint was affected (and alot of soft tissue in between) I pretty much ached from head to toe, and some days could barely move.

They put me back on humira, but it was discovered that I had built up an immunity to it, so it no longer worked. In June 2006 I started to take Enbrel and once again, haven't looked back. I have a few probs occasionally with my hands and one ankle, and have been put on sulphasalazine to try and help that (I've never had any luck with it on it's own but it's supposed to be very good in conjunction with certain drugs). I also refused Methotrexate until I knew I wasn't going to have any more babies.

Re: a good Rheumatologist, I was referred to Bruce Kirkham at Guys Hospital. He and his team have been FANTASTIC (I even featured with him on City Hospital last year for a couple of mins

), and I would thoroughly recommend them. Get your doctor to write to him for a referral. You may not get to see him, but all the docs that work with him are also v.good. They do ALOT of work with RA, and they also do lots of drug trials too (I trialled for humira, was put on a placebo at first, but then got the real thing which enabled me to go on it long term alot quicker than I would have done without being involved in a trial.

I hope you get some help with this and are in remission soon, it's a grim condition to live with

cpx