Rheumy today - tests tests tests!

It is all go now! After months of lazily enjoying my steroid holiday I'm now back to reality. My Infliximab treatment will start as soon as they can fit me in, to start with I need to have two, two weeks apart, then another four weeks after then every eight weeks. Biggest negative side to it is I need to go back on MTX, I said OK but the lowest possible dose please! I don't get sick on it but I did get severe anxiety and depression. I'm just hoping it won't come back! A lot of the anxiety centred around work and I'm not working now so hoping I'll be OK.

I had a good moan about the trouble I have with my stomach, he still thought it was maybe just acid reflux and prescribed me something (which I couldn't get as I only had enough money for one drug and needed the Prednisolone). I pushed about the bad palpitations I have after eating so he sent me for an EEG - it came back 'borderline' with a small concern with electrical output? Not sure what it meant (I took the sheet out of the envelope and read it before I handed it in at the rheumy clinic). I also had a chest X-ray and need to go in for a bone density scan and a lung function test. And of course the ever present blood test as well.

I also have a prescription for MTX, folic acid and antacids. I told him I'll get them next week when I see the Opthamologist but I just don't have the money for three lots of drugs :-(

I was also squeezed in to see the Rheumy nurse for a pre- Infliximab check and got an info pack.

It's all or nothing at that place!

And I've put on half a stone since Christmas on the steroids, going to have to give up ice cream!

Cheers for reading, ice cream to all who got this far XXX

12 Replies

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  • You thought about a pre paid prescription. You can pay it at 10 pounds a month. And it covers all your drugs.

  • Hi,just a thought with the prescriptions,I pay annually for a years prescriptions,it only cost me £105 for a year,and there's no limit to how many prescriptions you are on,it saves me a HUGE amount of money if you can't afford yearly,you can pay quarterly.hope this helps,and wishing you all the best with the infliximab.take care Michelle xxx

  • hi,when i was on regular prescriptions, id pay for three months, about £28 and a day or so before it expired get another months supply, then i'd renew the card the first day of my next renewal making the card cover four months, so i was only spending 3 x £28 to cover a year.

    hope this helps,

    steve

  • Explain this again lol, I'm lost but intrigued ? Thanks Michelle xx

  • Hi i do 1040 per month pre payment. You only pay for 10 months xx

  • Thanks, we are applying for tax credits since I just lost my job, prescriptions should be free then! We are in a sort of limbo at the moment money wise. xxx

  • Hi, I got right to the end of your blog, no problem.

    I'm retired so I don't have to worry about the cost of prescriptions, but I have never given a thought to the difficulty some people like yourself have to face about finding the funds to get the drugs you need. Sounds like you have been given lots of valuable info from everyone here though. I hope you soon get your tax credit situation settled so that you don't have to juggle with choices of drugs to get from the pharmacy. All the best to you, June x

  • Living in scotland, we dont have prescription charges anymore, however i havent had to pay since being diagnosed with an underactive thyroid in 2002. Like petal, ive never really thought about struggling to fund medications and in my ignorance, i thought that RA would qualify for free prescriptions as it is a long term chronic disease. Its shocking to think that anyone would experience the pain and fatigue that sadly is taking over my carcass again and have to choose food and heating instead of meds that improve the quality of life. It seems to be just another example of how f$€ked up this country actually is, the priorities are all wrong!!!

  • Hi all i to struggled to pay for mine so opted for pre payment the best thing i ever did, but a collegue of mine who suffers dieabetis said she doesn't pay as it's a named diease ? is RA a named diease ? she didn't know or know how to find out just thats what her doctor said!! does anyone else know ?? sorry for the spellings am hopeless

    sarah

    x

  • I have a prepayment card but as my steroids led me into diabetes and having to take tablets I now get mine free. Another side of living with ra that people dont really think about, the cost both in getting aids and medicines. Hope you get this sorted soon and the tax credits get through quickly to you. xx

  • Like everyone else I pay for a pre=payment certificate £10 a month ( for 10 months) With RA & Asthma Im having 9 prescriptions a month, that's a mighty saving I have! Regarding Tax Credits.. depending on your cicumstances You may find you can only get free prescriptions if you have dependent children; I have tax credits but no children & don't get free prescriptions. Its definitely worth going the pre-payment way.

    Rie x

  • There is a low income scheme for NHS costs, I'll apply for that when we get the tax credits, our income is so low we should be entitled to the full allowance of tax credits so should get the low ncome NHS certificate too, hopefully! xxx

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