On benepali

[Matilda_1922]

Recently I’ve had 2 deliveries a month apart with 4 weeks supply. Usually I will receive 8 weeks supply,

Is this happening countrywide.

[Mmrr]

Just starting tonig with benepali.....let's hope we don't have problems. All of us.

[Hidden]

No, not here, I had 8 delivered a week ago

[Matilda_1922 in reply to Hidden]

I’m not sure why it’s changed to 4 weekly.

My appointment is coming up soon and maybe they’ve seen I missed a blood test. Usually 2 monthly but left it 3 months this time. Never hear about the results and I don’t like blood tests.

[Hidden in reply to Matilda_1922]

I can view all my test results online, bloods, X-rays etc. I assumed all surgeries did that nowadays.

[Matilda_1922 in reply to Hidden]

My bloods go to the hospital so don't get the results nor does my GP

[Hidden in reply to Matilda_1922]

My bloods go to the hospital too but my GP gets the results. I suppose it’s different depending on your surgery and hospital.

[Hidden in reply to Hidden]

My GP is in a different NHS area to my hospital, the blood tests all go to the hospital wherever I had them done, so rheumy always gets results. But my GP only gets results if she has done the tests. Drives me barmy, as she complains to me that I haven't had a blood test and arranges another one, so I sometimes have tests doubled up.

[Matilda_1922 in reply to Hidden]

This sounds like me

[PinkLamb in reply to Hidden]

Hi Kittyj

Hope that you are OK??

Just wondering, how do you get your tests online??

I never find out how my blood test are, unless my RA nurse sends me a little note to get a repeat test done!!

Is it maybe because you get your tests done at your GP's??

Pinklamb

Xx

[Hidden in reply to PinkLamb]

I do get my bi monthly blood tests taken at my GP’s and I can log in to something called SystmOnline to see my medical records, order repeat prescriptions and see all test results. x

[PinkLamb in reply to Hidden]

Hi,

Ah right, I will have a look!!!

Thanks Kittyj

X

[Matilda_1922 in reply to Hidden]

We have system one but no access to bloods or anything else. However my results go direct to the hospital and not to my GP.

Things may change after April as my GP is being taken over by a large GP practice

[Hidden in reply to Matilda_1922]

I’d ask about it. I didn’t know you could get them that way until they stopped writing results in my methotrexate book and I asked for copies of my results. They said I could access them online and they sorted it out.

[Bradclew in reply to Matilda_1922]

Hi when you go to your app ask ant yourblood results I’m a nosy person I suppose I always ask and the results are given gladly

I have an infusion every three month to build bone and I ask questions there just the same.

I think the nurses are glad toknow that we are showing interest xxgood luck

[Paulajolo]

Mm maybe it's because people end up wasting some if they have to stop taking it. I had 8 weeks delivered but after 3 weeks had to stop due to allergy. This meant 5 were wasted. I think monthly delivery should be the norm.

[Msop in reply to Paulajolo]

Hi Paulajolo, would you mind if I asked what the allergy is you’ve developed as I have been taking benepali since Sept 18 and feel that I am allergic to it too. Bright red marks, almost like weals, appearing all over my body which then become extremely dry. Used to be on Enbrel and had no issues with that at all so seeing consultant end of month as want to go back on it.

Thanks

Marie

[Bradclew in reply to Paulajolo]

I pick my monthy supply at the hospital at my appointment

[Kerensa21]

Mine’s always been 4 weekly Matilda; they ring to arrange, tho’ i’ve had to a couple of times when running out. I never see blood tests either (frustrating isn’t it) but did recently get all letters to GP: after 3 verbal requests, put in writing. x

PS I can access gp blood tests online but not ones done with rheumatology forms, keep saying they’re going to centralise so patients can access but hasn’t happened yet. Seems to depend on area looking at above

[HappykindaGal]

Mine have always been monthly. I’m going away soon for two months so will get more then, but it’s not the norm.

[Chann]

Mine are 2 monthly - perhaps it just depends on area? I was told the blood tests are essential in order to keep getting the Benepali.

[jane1976]

Hi

I used to get 2 months supply in one delivery, now I get 3 months supply in one delivery. I find it a big responsibility especially as we often have power cuts where I live!!

[Jackadoodle]

I get a three monthly supply, if you have a power cut it is best to ring the supplier who will then contact there pharmacist who will speak to you with advice, I had the problem with electric supply cuts and had to dispose of the ones that I had in the fridge and the pharmacist sent me a new supply.

[Tabitha73]

When I was on Benepali there would be times I got 4weeks supply and they said this was due to a shortage and it then went back to 8weeks supply. I had to stop benepali due to allergic reaction after 16months!

[Uga35570]

I am methotrexate so maybe different but just wanted to add that my blood results are entered up each time in a little book supplied by surgery so I have a record/comparison each time for me gp and rheumy. Thought this was the norm but obviously not bit old fashioned I suppose but sensible I think.

[Hidden in reply to Uga35570]

Yes I used to have one of those books but the GPS stopped doing them 6 months ago and we now get them online. Much better as I somehow used to lose the books.

[Hidden]

I still have my book, and if I ask the rheumy nurse she sometimes writes them down for me. But if I could find them out online myself, I could put them down myself. Must ask.