What now?

[Bailybiscuit]

I saw a rheumatologist yesterday , my appointment had been brought forward as I have been having increased pain while on Benepali and steroids. It seems each time I reduce to 15mg pred pain starts coming back. I got down to 13mg and was in so much pain and could barely move that I rang the Biologic nurse and she said to put my steroids up to 20mg. This helped a bit then I had an appointment a week later. The Dr I saw yesterday said that my hip was totally shot, his words and I need a new hip. I knew that bit. Then he said he thought I don't have RA and it is all OA. The worst bit is that he told me to stop Benepali and lower my steroids to 10mg. I told him I would be unable to move on that dose. He just said that I can't stay on them and then said to take what I need to function. I feel so let down and abandoned. I never had positive blood results and no real swelling of my joints, only swelling of fluid. My knees are huge around the joint but no fluid in it, but I did have steroid injections in December so that might be why. What I get besides pain in my shoulders, knuckles and hip is aching in my arms, hands and knees plus icy cold feelings in my knees. The aching is like bad toothache. Now my next appointment will be 6 months away and I know I have a lot of painful days ahead of me.

[popsmith1874]

I can sympathise with you about being in pain with Benepali because I've been on it since June alongside 20mgs of mtx and although I felt slight relief for 2 months but it has stopped working for me now to the point I can hardly use my left hand as it is so sore and swollen , plus I've got torn ligaments in my left ankle after a fall at my leasure centre

[Bailybiscuit in reply to popsmith1874]

I started it in August and wasn't sure it was working until about December, except it probably wasn't unless it needs to work with about 15mg steroids, then that defeats the reason for using it. my hands were never swollen but my wrists would give way at times and become weak.. I don't know how I could be assessed for a biologic and have my sore painful joints counted and now be told I don't have RA. To me it shows something was working and that's why I didn't have sore joints yesterday. I was told to put my steroids up so I had a week at a higher dose as I wasn't expecting to see anyone so soon.

When do you see anyone to find out what you must do if it isn't working? I hope your torn ligament recovers fast.

[popsmith1874 in reply to Bailybiscuit]

I seen the specialist nurse in December and she wanted to give it a few more months but I have my doubts I'll need a deposit injection in my hand shortly but I'm starting to get sore all over again so I'll give it a few weeks them I'm going to phone them up because my next appointments not until June

[Bailybiscuit in reply to popsmith1874]

I thought they mostly add something else to the Benepali like with you. I'm sorry it's not working for you either. My doctor has suggested her and I complain about the way I have been treated once she gets the hospital letter.

[Phoo2]

Oh my goodness!!! This is dreadful.....poor you!!!!! It is totally unacceptable for them to leave you in a state of limbo for the next 6 months with the situation not resolved.

Have they stopped the prescription for benepali then? Have you been given results of blood tests displaying it's not ra but oa.........and if that is true they can't leave you on steroids for 6 months.....side effects are terrible.......have to have a long term solution......and if the blood tests were negative why did they start you on a biologic??? It's crazy!!

I am not surprised you feel completely let down....... But don't give up.... Get some answers and some long term solutions.........

Don't stop sharing....maybe we can help......pain is awful I really feel for u..

[Bailybiscuit in reply to Phoo2]

I was told to stop the Benepali so I rang up today and the lady I spoke to was very surprised, she said she had to hear from the hospital but they took several days at times. I know I have to get off steroids that is why I was put on other things but non have worked. I don't know how I scored the joint count test they do to apply for a biologic. I was told as I was seronegative I needn't show any positive results for RA. I have been on steroids for over 3 years as I started with polymyalgia. My Dr had to write to the hospital Dr three times before they took notice that my symptoms were not Aytypical for that.

[popsmith1874]

Ditto I'm seronegative as well so it doesn't matter if your results are negative as mine always are. As long as you pass the DAS 28 and have failed on 3 dmards then you qualify for biologics

[Bailybiscuit in reply to popsmith1874]

So as I passed that how on earth can a different rheumatologist say it is all OA. We will see what happens. I'm not looking forward to the next few months.

[popsmith1874]

I don't know but I've heard some horror stories regarding the attitude of some rheumatologist s. , mine was a bit funny at first but she soon learned that I wouldn't be intimidated she was pleasant after that, I would suggest to taking someone with you to appointments if your not doing that already good luck

[Bailybiscuit in reply to popsmith1874]

My husband was with me each time but the rheumatologist said he had no evidence of me having any type of inflammatory arthritis. I find that strange as I have seen in all 6 different ones over a three year period and 5 thought that I had some sort of RA although they didn't seem to agree on which type.