Hi Sarah - really sorry that you've got so much on your plate, but you sound as if you've been coping brilliantly, with health issues, work and a new baby - that can't be easy. First thing to say is that the NHS are getting very good at treating rheumy patients, but it is still patchy. I live in Devon, and Torbay hospital is so good that I wouldn't bother with private. I did have one private appointment as I wanted to clear up if I was eligible for a lump sum payout, but my joint problems are not bad enough, and hopefully never will be as my RA is now under good control. You might want to check your policy as there some chronic diseases that have special cover, and RA is sometimes one of those.

I am on methatrexate and hydroxychloroquin, but there are several here who are on sulfasalazine so may have more relevant advice.

The one thing we all have to learn very fast is how to be an assertive patient - it is essential that you know what the various treatment options are. The current NHS guidelines for RA propose an aggressive drugs regime to get the inflammation fully under control, with DMARDS, pain killers and possibly steroids, backed up by multidisciplinary care including the occupational therapist (who looks at hands, splints, exercises), physiotherapist (very keen on hydrotherapy at quite a few hospitals) and the podiatrist (feet, insoles, etc). As I said, it is a bit patchy, but the best hospitals are really very good.

I am 55 and was diagnosed with RA in May 2012 - I was quite disabled at that point, but have responded well to treatment and am now in clinical remission and back at work and feeling very good with virtually no pain and little fatigue. But even so, I have my monthly blood tests at the GP, with weekly hydrotherapy and regular checkups with the OT, podiatrist and specialist nurses. There is a help line which gives me immediate access to the specialist nurse who is able to manage my drugs, including changing the doses etc. In the early days I really needed that support, but now I manage myself with advice as needed from the kind people who visit this forum.

My limited experience of using private care includes seeing the surgeon about knee problems - he didn't realise that I had RA and simply gave me steroid jabs n the knees. It took several months before I could persuade my GP that I needed to see the rheumatologist, and there seemed to be virtually no linkup between the private consultants - at least on the NHS there are increasing guidelines to involve the MDT team and that means care is more joined up. I love your analogy about herding cats - it really is like that at times! The most important advice is to get copies of everything - chase it up and talk to the consultant's secretary - they sometimes have differen secy for private and NHS work to make life even more complex! You're obviously getting to grips with the jargon and drug names, but you also need to keep track of your blood test results. Most of us here have little booklets that get filled in after each result and we can then keep an eye on when the values go up or down suddenly, which may mean that drugs need tweaking. You need to be a well informed patient to get the best care, and that's where this forum is so good. We have lots of regulars plus 2 or 3 new members every month, so there's always somethng to discuss. Do keep dropping in and let us know how youo're getting on.

Best wishes - Sylvia xx

Oh dear swhitch, One illness seems to lead to another one.Catch 22 when you go on different treatments make sure you can take them along with your medications for the illness you have already got.Me i have Bronchiectasis,have oesophagus problem with swallowing (have to go in thearte to have rods down then a balloon inflated) also R/A.All my medications (lots of them) have to be discussed among all my consultants first.So do be aware of this.Good luck Valerie-R

Hi Sarah - that's brilliant about the dosage! Having to explain drugs to the rheumy - wow that's a new one!

My father-in-law has had crohns disease for many years (he's 81 bless him!) - but I'm delighted that his symptoms have been under control for most of that time, and I think he now keeps it at bay with diet alone. I imagine like RA it can vary with the individual but let's hope that you can get yours under control in 2013. Hope and positive thinking are both important tools in managing day-to-day with a chronic illness, and I look forward to hearing how you get on.

Best wishes = Sylvia xx

Hi Sarah

Welcome to the forum. Sorry you have been diagnosed with RA but you have found the right site for support, information, experience and hopefully a bit of a laugh along the way.

Goodness you have been given a lot to deal with Chrohns and RA. It must be difficult trying to juggle two conditions and different Consultants.

Following years of undiagnosed illness, my immune system finally went haywire about three and half years ago and after a visit to my GP where I thought I must be going through the menopause, my GP picked up that I might possibly have RA. I have private medical insurance through work and I was immediately referred to a RA Consultant. A week and half later I had the diagnosis of RA which was the biggest shock of my life, but oh so welcome. I had been so ill for so long and was beginning to wonder if I was going mental and imagining the symptoms.

Following my diagnosis I moved over to the NHS for regular care. For the first year the RA department was in our local hospital and the care I had was not brilliant. I almost felt abandoned and turned to this site and was able to find so much emotional support that it got me through the difficult dark days. I did go back to the Private Consultant a couple of times and he wrote to the NHS RA team and told them how I should be treated and they followed his advice.

After the first twelve months, a brand new RA unit was built away from the hospital and about five minutes from where I work. We now have a wonderful RA team (Telford and Wrekin). The RA Nurse always rings back when I need her, she fits me in for an appointment if I have a flare and I get to see the Consultant every six months but earlier if needed.

Two years ago next week I had a full knee replacement using my medical insurance. Brilliant care and accommodation but the after care was not brilliant and the physio was very basic. When I have my next knee done, I am seriously considering going NHS as I have seen other people's recovery and physio has been brilliant.

So really, in answer to your question, I dip in and out of my medical insurance for whatever I can get cover for. I always make sure that the private Consultants write to the NHS Consultants with a copy to me so that I can keep an eye on who knows what.

Keep posting and take care

Jackie
xx