1 year

Hello! hope you have all been as well as you can be :)

1 year ago today I finally got diagnosed with RA!

The past year has gone so quickly. I'm currently on Benepali and MTX, this seems to have settled my joints down for the time being which is nice.

I'm still really struggling to get my meds, every other month it seems to be a real battle with my GP/Hospital. Does anyone else struggle to get their medication? If so any tips would be appreciate.

Chloe xx

11 Replies

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  • I'm glad you are finding some control of your symptoms with treatment, happy anniversary lol :) Unfortunately, I can't help with your question, but I'm sure there will be others who can x

  • Hi chloe I was diagnosed 1 year ago the same as you must say I am very lucky medication works I forgot what it was like to be pain free before taking the medication I do ache when I stand up after sitting for a while but don't call it pain but sorry I cannot help you with your problems cx

  • Hi. Glad to hear you are doing well on your meds. You don't explain what the problem is. When my Rhumy prescribes a new med, I only get the first month, then it's down to the GP to issue repeats, can sometimes be a problem with the time it takes for letters to reach the GP to inform him. I take Humiria and this is delivered by Heathcare at Home and arranged by the hospital. Providing you blood test are OK the hospital sends a prescription to HAH who deliver direct. Not sure what your arrangements are though.

  • Health care at home are great! They call me and never miss delivery! It's my methotrexate that's the problem. The gp aren't happy to prescribe it to me. The dosage has to be made up specifically and then dispense the needles seperatly which is just a nightmare!

  • Oh dear, more added stress for you. I only take Mt tabs, this did cause a problem for me first time round, as my rhumy has a clinic in my local communitity hospital this doesn't have a pharmacy, she had not dated it and tried to give me 3 months worth. The chemist can only give you one month anyway. So was a chase around to get a new prescription as she had gone back to the main hospital which under another health authority. When I came to get a repeat from my GP he hadn't received a letter from the hospital. I had received a copy letter so took it to the surgeryso all was well. Seems to me your GP's are being very awkward. But that doesn't help you. As you have mtx injections could the hospital not arrange delivery through HAH for the long term. Hope this mess sorts out soon. X

  • Yes. I had this recently where I was running out of meds so I went to my GP. The GP said they couldn't prescribe because there was no Shared Care agreement between the consultant and them, and that I'd have to ask my consultant. Fair enough, I thought. I hadn't been seen by a doctor since starting the meds. But the consultant said the GP was responsible and didn't know what the problem was. I went back, through her secretary, to explain what the problem was from the GP's point of view. She got back to say the GP was wrong and I needed to go back to them and tell them they could write me a prescription.

    So I went back to make ANOTHER appointment with the GP - taking up another valuable GP appointment and losing ANOTHER half a day of work - and they said the same thing as the first GP. In the end I was like "SOMEONE JUST WRITE ME A *&%$ing PRESCRIPTION". The second GP eventually agreed to give me a short supply to last me until my next rheumatology appointment, but only after she detected the desperation in my voice.

    It was degrading. Before I was diagnosed I waited so long, in pain, for someone to take me seriously and treat me. I finally got some treatment - that worked - and then I was made to run around practically BEGGING for my meds, like some kind of crack addict. I'm really angry about it.

    Anyway, that's my rant. Tell me yours.

  • Very good rant! I am experiencing exactly the same. I am also Practically begging the rhem nurses and gp and practice managers. The hospital say the gp can sort my methotrexate and the gp aren't happy to sort my methotrexate. So I ran out this week. They all know I have run out. And yet are still making me wait whilst they argue between them selves!

  • This is unacceptable! Have you thought about contacting your PALS service and just letting them know what's gone on?

  • As I understand it the GP has to sign a form sent from the rheumatologist saying he/she will issue an NHS prescription but the consultant iscstill responsible for the patient taking the drug,

    I had to pay for a private prescription for Leflunomide for about 4 months before my GP would sign it. He said "he had to be sure " of what I don't know. He's not my GP any longer!

    I think as lot if these hold ups are internal politics between hospital consultants & GP's who don't understand RA drugs, & are too precious to learn......one Locum GP told me he couldn't answer questions on Leflunomide as he had no knowledge of it! What happened to the old school GP who looked things up?

  • When I was put on Hydroxychloroquine I had problems as they we're looking for an amended Shared Care Agreement. But the receptionist got the duty Dr from his room and he read the letter over her shoulder. He issued a manual prescription, but said that they needed the agreement. The following day I called my Rheummy nurse (we had one then) and she faxed the agreement across. I have had no problems since.

    My last Rheummy appointment changed my steroids, but the Dr just amended my prescription on my word (no reason not too).

    Jacqui

  • Sounds like you have a lovely understanding doctors!

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