Rheumy appointment.

[Heathersmum69]

Good afternoon everyone,

I hope you are not too bad today?

This morning I spoke to my nurse specialist ahead of my appointment on Thursday. I wanted to pre warn her that I need something doing as I am now on no medications apart from Naproxen and Co coda mol . I have tried the preds. but they made my eyes bleary .

She said that on Thursday she will start the procedure for the Biologics, blood tests,DAS score etc ,and then to come back again in eight weeks. Eight weeks ,I can't believe I will need to wait that long. Is this normal?

Thanks everyone .

Jane x

[helixhelix]

Sadly, yes. The requirments for funding of biologics (which cost about £10,000 a year) are two sets of DAS scores over 5.3 taken about 6 weeks apart. Only after that can the hospital request funding, which takes another couple of weeks. Sorry! But at least you are on the road.

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It is all to do with costs and additional tests.

These drugs are expensive so NICE generally has to agree to fund these medications.

Certain hoops need to be jumped before they feel that Biologics will be beneficial. The Clinic you attend has meetings to discuss patients before recommendations can be considered. All takes time depending on your Health Authority area.

You will have been taking a DMARD, if that suites you they will most probably require you to piggy back DMARD and Biologic together after recommended hurdles have been jumped.

Good luck, I hope you are happy with their recommendations

BOB

[Tawney]

Hi. I got very ill and had to come of methotrexate. That was seven weeks ago. I'm told I have to wait till the end of November for an apt with my rheumatologist. Have bad pain in feet and hands so I know all is not well. The waiting times are so long it feels unacceptable. I'm now only on hydroxychloroquin. Does everyone have to wait so long? And when I am started on another drug, it's three months till you know they work. Cannot have another steroid shot, because on top of the methotrexate, that's what put me in hospital for two weeks. Feeling quite abandoned, don't know about you. Hope you get some good care soon.

[Heathersmum69]

Hi Tawney, I know what you mean. When we are all in soooo much pain,it would be good if we could get treatment as quickly as possible.

I understand about nice guidelines and funding,but this disease stops us in our tracks and everything gets put on hold,

Anyway ,good luck Tawney. I am in for a long wait as I need to wait for the approval for my Biologics . Then I need to wait for them too work.

Moan over. Take care.

Jane x

[Tawney]

Thanks heathersmum69. It's a lonely journey sometimes isn't it.

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My poor old gran had RA in the 1930s. All she could take was aspirin! How on earth did they used to cope in those days? She brought up 5 kids alone, as in those days men worked and didn't help out with household chores (he was a miner). She baked all her own cakes and bottled fruits and pickles. Takes me all my time to get out of bed sometimes!