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Date: 19.05.2011
From: Charlotte

Subject: RA New & need advice

Hi

I was referred to a Rheumatologist last August because I was getting pain in my hands and feet. I had had several blood tests all negative for RF but all showed high inflamation (or so I was told!).
At my rheumy appointment the Dr examined my hands feet and neck. I had taken photos of my hands when they were swollen from my list of symptoms the Dr said it was highly probable I had RA but because it would come and go he wanted to see my in 6 months and sent me home with Naproxen. They gave me really bad heartburn so I stopped taking them!
My next appointment was February my symptoms were slightly worse so he changed my meds to Plaquenil & Celebrex and told me to take them only when I had a flare up! Within weeks of seeing him I am now taking them both twice a day and nefopam (acupan) twice a day also.
Over the past few weeks I feel the symptoms are getting worse and the meds "seem" to have stopped working aswell and I am not seeing Dr till around August.

Is this a common problem with RA? Confused any advice would be great!

Sorry its so long
Charlotte Xx
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Date: 19.05.2011
From: kirst

Subject: Re: RA New & need advice

Firstly, the Dr should have given u some sort of tablet like renitadine to prevent any problems with your tummy (such as heartburn/reflux), as naproxen definetly irritate the stomach, maby ask the gp about trying them again with some kind of gastric protection (renitadine/omaprazol ect).
Its very common with RA to keep getting flare ups, but you may also find that you have months of not feeling too bad. when i was diagnosed over a year ago i was feeling awful, started meds and then fels even worse. over the summer began to feel almost normal.
With regards to meds, definetly go and see your GP. They will be able to sort you out as there is a lot out there to try but unfortunetly its all trial and error before you find something which will work the best. dont wait for the rhumatologist appointments to speak up, if you feel bad and nothing seems to work, ring the rummy and ask to be seen sooner.
My advice would be stand firm and make the doctors work lol.
I hope you start to feel a bit better soon. x
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Date: 19.05.2011
From: Patricia

Subject: Re: RA New & need advice

Hi Charlotte. Sorry to hear that you are having problems. One thing is for sure, RA is an unpredictable illness. Every day is different!!!

Like you, I take plaquenil and celebrex plus oramorph for pain relief and lansoprazole to protect my stomach. Would just like to mention that you need a regular sight test when taking plaquenil because there is a slight risk to the eyes. I also take prednisolone (steroids) at the moment which is great at acting quickly to quell the inflammation and thus reduce your pain/swelling until they get your medication right. Perhaps this is something you could talk to your Rheumatologist/GP about.

I have been diagnosed for well over a year now, and had symptoms for many years before that, and my meds still aren't right. Unfortunately it is trial and error and it can take a looooooong time for the Rheumy to get it right because we all react differently to the drugs.

August is a long time to wait when you are in pain and I would encourage you to contact your Rheumy nurse if you have one. They are usually the 'go between' for you and your Rheumatologist. If you don't have a nurse then you should contact your GP Charlotte. Please don't suffer.

I hope things get better for you soon....x
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Date: 23.05.2011
From: Paula

Subject: Re: RA New & need advice

Hello

Have I read this right. You only have to take your meds when you are in flare? From what I know about RA the DMARD'S (Plaquenil) needs to be taken all the time, in order to try to get the disease undercontrol and not only when you are flaring.

If I was you I would speak to your specialist nurse just to check that you understood what your consultant said to you. You may also like to give The National Rheumatoid Arthritis Society's help line up 08002907650 and have a chat to them.

Hope this helps. It does get better once you are on the right drugs, honest!!!!
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