Fighting this horrible disease

last week I had my last dose of steroids. my symptoms of confusion, out of focus eyes, headaches etc have now gone so I guess I can say that unfortunately they were side effects. Having RA is horrible but it is another blow when you find that the drugs that are suppressing it are causing effects that are making it impossible to function too. I started on the steroids in November and like magic they suppressed the RA but then a month ago the side effects kicked in. Unfortunately I also had a bad reaction to methotrexate too in November so I am now waiting to see the rheumy to talk about the next step. So here I am with the RA starting to rear its ugly head again. Do you know what's hard is to have 3 months of feeling so much better and actually living not existing and then have it taken away again. I have had this rollercoaster of problems for over a year now, so despondency is starting to set in. I have just been reading some of the case history's on the NRAS website. One post was by a young woman who has RA that started at 21 years. Three years later she is about to begin a biological treatment after many ups and downs as she says. She writes about the struggle to be put on a biologic. The fact that there isn't the funding for these drugs, which for some people have lesser side effects, and work much better for their RA. She said that now she wants to highlight the difficulty in getting these drugs. She said how can it be right that people are not allowed to try a drug because your 'RA' is not bad enough yet'. Can you imagine being told that when you are so young. The knock on effect of taking drugs that are not effective enough and also give you bad side effects, is huge. Mentally emotionally and physically it takes its toll. What does that do but leave you with a person who is broken and probably ultimately will need more care that will cost the health service more. When I spoke to my GP the other day he told me that if I was in America the first drugs you are given are the newer ones. Obviously people have to pay for these and I don't know how insurance works with chronic disease in America. I guess for those who can't get health insurance there's no hope. Awful. I realise that nobody can say that you won't have bad reactions to the newer drugs and you may still have to try different drugs before you get results. BUT shouldn't each individual have the right to try these drugs as a first line of attack for this horrible disease. I am thinking of everyone out there fighting this horrible disease and hope and pray that one day people will not have to battle to get effective treatments. take care, thank you for listening to my rant!!

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  • Hi Maywing

    I am really sorry to hear of the tough time you have had with your medication recently. I also know that you are not alone in being frustrated about how hard it can be to get onto the biologic drugs in the UK.

    I thought it might help if I offer you and others some reassurance about the non-biologic options for people with RA. People are naturally concerned by the fact that cost is a big part of why the biologic drugs aren't used as a first line of treatment. However, there are also other reasons for the non-biologic DMARDs to be tried first. They have less of an impact on the immune system, so have a lower risk of infections than the biologics, and can work extremely well, so some people do not need to progress onto the biologic drugs, or may not need to for a number of years. There have even been studies that compared methotrexate on its own and a range of biologic drugs on their own, which found no noticeable difference in effectiveness, so the older drugs are still very highly regarded.

    I really hope that the next option they try will work well for you, whether it is a biologic drug or another standard DMARD (or possibly more than one standard DMARD in combination).

    Whichever treatments they look at next, please feel free to contact the helpline if you want to talk about the options in more detail. We are available Mon-Fri, 9.30-4.30 on 0800 298 7650.

    Kind regards

    Victoria

    (NRAS Helpline)

  • There's a new unit in Glasgow which specialises in identifying by DNA which meds will suit you. We have to keep pushing to get treatments

  • Recently it was announced that the price of Viagra had been reduced. This is because the original producer's patent on the drug had expired. My consultant was telling me at my recent appointment that the same thing will be happening with some the bio drugs. The make up of the drug is 'tweeked' ever so slightly......they are called 'similars' and can be up to half the original price.....just like the Viagra. Hopefully this will mean that these fabulous drugs will be more widely available to rheumatoid disease sufferers. I had to wait for nine month, nine moths of crippling agony, before I was allocated funding for my drugs. They cost 1,200 per injection!!!!!

  • Hi maywing, so sorry to hear your having trouble being prescribed the bio meds for some its a long road, I to had lots of different meds over the last six years and have only been put on the bio ones in the last year, sadly the strain on over NHS is so much so that its them that need don't get until your on your hands and knees begging lol, I don't mean to make light of it I know how you feel I think we have all been there at one time. xx good luck and don give up the fight because the RA wont stop fighting you xxx

  • You could be me is all I can say. I am currently trying methotrexate for the third time now, by injection this time taken yesterday and do not think I can cope with the side effects. The first time my GP thought I might have a virus as well I was so ill, so we tried again at half the dose. Then the Consultant offered me leflunomide or methotrexate by injection. I was going to try the new drug but in reading the side effects which seemed identical and talking to the nurses they thought it wise to try the injection first as I may have less side effects. If this is the case generally, why for heavens sake don't they give everyone methotrexate by injection in the first instance. Answer is no doubt cost. I can see I am going to gave a terrible time over the next few months as I try and fail with these awful powerful drugs, whilst at the same time taking such a cocktail of steroids and pain relief and sleeping pills to combat the effects of the steroids that I rattle. I don't want to take any of these pills. I just want to be able to function properly and have limited pain. Is that too much to ask for?

  • Hello maywing!!

    I can relate VERY much to your post. When I was diagnosed at age 25 I was living in Northern Ireland and despite the fact that my GP and rheumy were desperate for me to get biologics, I wasn't approved for them by the NHS. I was barely able to walk, never mind work, when I wasn't on steroids. I had to quit my job and move back to Switzerland. My rheumy here put me straight on a biologic and within 5 days, my symptoms were mostly gone. It was like being on steroids without the steroids! :)

    Now I have a job (am about to be promoted!), live in a lovely, spacious flat, have a social life and can do sports and exercise. Back in Northern Ireland, I'd probably not be having/doing any of these things. I don't understand why people aren't given biologics when it becomes clear the DMARDs aren't working or aren't tolerated. In the end, it saves SO MUCH more money to have people working, paying taxes and contributions, and coping better on their own.

    Here in Switzerland, if a rheumy thinks you need biologics, health care insurance providers hardly ever refuse them. Of course, I pay a fair bit more for health insurance but it's nothing compared to the real cost of the meds and the quality of life I have on them.

    I am seriously toying with the idea to become some sort of biologics representative :D I wouldn't need to be one here because access is no problem but maybe I shoud tour the UK ;)

    I am terribly sorry about the situation you find yoursef in. It really angers me that the system lets people suffer like that when there are new treatments that might work for them.

    Love and hugs, Christine xxxx

  • Hi maywing!

    It is truly a shame that it is so difficult and costly to get the medications that are most effective in treating RA and other dreadful diseases. I was diagnosed with RA in October 2013. I live in America and I pay for insurance through my employer. The insurance standard in America is that certain steps in treatment have to be followed and fail to give relief before newer more expensive drugs are approved. I was started on plaquenil first. No help. MTX pill was added. No help. Then MTX injection. Still pain. Then increased MTX. If that doesn't help I will hopefully start a biologic. But before I can, insurance will have to approve it. For that, my rheumy doc has to write a letter requesting approval. He said it is usually not a problem to get approved. The cost of my copay will be higher but still only a fraction of the drug cost. That is all happening within a year of my diagnosis, so it seems like our system is much quicker. I am not sure how this will all work for people on "Obamacare". Of course if you are rich and can pay the cost out of your pocket, you can take any drug you want!!

    I hope this helps to understand the American system.

    Best wishes to you! I hope you get relief soon!

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