A year post diagnosis and no further forward

This weekend is tough. It's exactly one year since I was diagnosed with RA after waking up in the middle of the night unable to bend my thumbs. I deteriorated quickly and soon I was in excruciating pain in my elbows, knees, wrists, ankles and feet. It has also affected my bowel and I now get terrible palpitations.

I saw my GP, he acted quickly and referred me to the hospital. I wait three months for an appointment. I was formally diagnosed with RA. I was told my bloods showed positive for anti-ccp and examination showed my joints to be swollen. So far so good. This is how it should be - but a year later I am in more pain than ever and have had no relief from the RA at all. My GP called me last week. He thinks quite rightly that my hospital care has been appalling. He has written a formal complaint and sent off a request for a second opinion.

It seems if you aren't a model patient who responds well to the mainstream dmards you are labelled a problem patient. The consultant has admitted the dmards have caused unacceptable (and in one case life threatening) side effects but the attitude of the RA nurses has been I should put up and shut up. Apparently it's annoying if your suffering man's they have to do their job.

The last appointment I had with the consultant they suddenly said that the pain in my elbows wasn't joint related as they have been repeatedly saying but it must be tennis elbow in the left and golf elbow in the right. Perhaps I had fibromyalgia as well as ans RA diagnosis and perhaps I just need gabapentin because I'm not going to qualify for biologics as my inflammation markers are normal. This told to me whilst they were laughing pushing the fluid around on my knee which I can't bend.

Both my GP and my occupational health consultant feel the hospital are flailing about because I am not a straight forward case. They both expressed astonishment and skeptism at the fibromyalgia diagnosis and rolled their eyes at the golf + tennis elbow rubbish.

They think it's an excuse as they can't get funding for the meds. The consultant admitted they wanted to give me biologics but I hadn't a hope in hell so they are now blaming me as the patient rather than their failing.

Are all RA departments this appalling?

In April they took me off all meds to hope "I develop some kind of permanent disability in my joints" at which point they will look again. So what happened to early intervention - oh yes only if you can stomach quite literally the methotrexate.

My grandmother also couldn't tolerate the meds in the fifities and ended up in a wheelchair as she was left to rot without treatment. I was reassured times had changed and things had moved on but they clearly haven't have they. I was told there were lots of options. It seems by this they meant three dmards....nothing else.

I'm getting to the point now that the pain is so severe I feel like jumping off a cliff and getting some peace from it. At the moment it's only my wonderful GP keeping me going.

15 Replies

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  • Get your gp to refer you urgently to another rheumatologist. This one sounds rubbish I'm glad they put a complaint in . X feel for you so much x

  • Ditto to what Allanah has said! X

  • I too agree with Allanah and i would also complain to PALS at your hospital as well. Can you afford to go private if so i would go private to get a better idea what your up against.xxxxx

  • Dreadful, dreadful treatment!! It seems totally appalling to me that the consultant isn't prepared to fight your corner and try to make the case for funding for biologics even if you don't meet the magic number. The NICE guidelines are guidelines, not rules. So he/she should push for flexibility. Would he/she do it for his mother I wonder?

    But I really hope you get a referral very quickly and are assigned to a extra-caring rheumy who is able to help.

    Not sure going private would help, as I think that you have to be referred back to NHS for biologics.

  • What utter hell you are going through. I'm so sorry to hear that you are having such an awful time. Glad your GP is behind you, can you get a referral to another hospital? If you have to go back here, do you have an "assertive" friend or relation who could go with you and demand some answers for you - it's really tough we you are at such a low ebb to fight these things sometimes. Sending you hugs and good luck. Let us know how you get on.

  • I agree with this. I got more help when my husband came with me and for once he just told the doctor how it is, how it affected all of us and what was the doc going to do about It! !

  • Off the cuff - and I'll look it up later - there are one or two biologics coming off patent this year (if not last year), so you should be able to try them for a start. I raised the subject of patent expiry on here before. Seems your hospital is behind and completely useless.

  • Not sure that makes much of a difference. Benepali is only 10% cheaper than Enbrel, £656 rather than £715. So for the NHS overall switching to biosimilars would save millions each year as the spend on biologics is in the tens of millions. But it is unlikely to mean that patients will be given them without going through the same funding hoops.

  • Further to my earlier post, Humira (which seems to be a very popular biologic) came off patent in 2016. There is a biosimilar manufactured in India at a fraction of the price.

    India is quite a centre for all sorts of cut price medical treatment and they have very advanced facilities and speak English. I think if I were suffering like you, I would take a holiday and see what can be offered. If you do get something that helps substantially at a reasonable cost, I am sure you would be able to get it here on the NHS and until such time you could just try to pay for whatever you can. It is not an ideal solution but it is a way out of your situation for the time being. Remember that whilst you are suffering like this the RA is doing damage to your joints and other parts of your body, which will probably necessitate horrible operations and only be partly reversible.

    You could make an appt with a private rheumatologist but I went along that route and did not get any satisfaction. In London you are looking at £250+ for one appt and you may need a few if you want to get to the bottom of what might be available to help you. It would still only give you knowledge and not actual treatment.

    I also think the various health treatments in India - massages and yoga included - would be beneficial as would the food which is largely vegetarian and full of health promoting spices.

  • I've been on statutory sick pay for 6 months I couldn't afford the airfare. I looked in to a private consultation when I was waiting initially but it would have been the same consultant I'm under now and cost £300 for a half hour appointment.

    I'm fully aware of what the RA us doing, hence my anger and frustration at my lousy hospital

  • I think I would start moving heaven and earth. Ask for an appt with your MP (after the election) for a start. Try to find out what the complaints procedure at your hospital is.

    Yes, the problem with going to India is largely the fare - it is cheap when you get there. When you have an income, such as from work, the problems are surmountable.

    I suppose you have tried the NRAS helpline for information regarding the availability of biologics and biosimilars? There must be a charity somewhere that could help you financially. Also, look into the possibility of participating in a trial - NRAS may have details.

    I am registered with a large central London hospital and I find them very good. Maybe you could switch. The funding may be better in London.

    I'll keep thinking to see if I can come up with something else.

  • Investigating trials is a great idea! Matilda_1922 was in a similar position to you and her consultant (a human being unlike your block of wood) put her forward for a biologics trial which she started last month I think. Check her posts....

    Certainly better prospect than moving countries! Even the Indian biosimilar for Humira (which has yet to be approved in U.K.) costs £3000 a year without even thinking about how to organise regular treatment thousands of miles away from home.

  • Ive looked in to trials but I live in a rural area and all trials are held in cities with training hospitals. So there are none I am eligible for

  • If you can't travel to a city then that's a £&^*+. I'm in a rural area too, so have to go 80 miles to the nearest city as hospital. Obviously good rheumies and countryside don't mix.

    Sounds like you'll somehow have to find the energy to kick up a big fuss, and seek a new consultant in parallel. Good luck.

  • Yes it's well known that if you are a doctor who doesn't want too much scrutiny or challenge in your practice then go rural. Usually much poorer performing medical staff

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