Please tell me what you think I should do?

Had my rheumy appt last week and asked how I was getting on, I advised the methorexate is helping slightly, but the sulphasalazine not and am taking steroids since beg of Jan coz of a flare, he wanted to refer me to pain management and I said NO, im not talking about how to manage pain when im on co-codamol, tramadol and now morphine! I manage my medication well but the pain is the problem........................ I was soooooo mad, I asked for biologics and he said how do you know about those to which I replied coz I research, anyway, he had a quick word with the top doc and said i need to do your bloods, did a disease activity score on my upper body (which he wrote 28) then handed the forms to me and basically sent me out the door........................ I had to have a few days to recover and ponder what to do next. I have rung the rheumy nurse who informed me last week before my visit that my recent spine x ray is showing wear and tear, she will ring me this week.


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  • Unfortunately when you see the registrar they have a limited agenda of what changes to make to your medication. The last time I saw a registrar, it was obvious he was not going to make any changes. When i protested that the present regime was not controlling the disease, he suggested (yet another) blood test. When i asked if the results would change his management, he said, no - he wanted me to continue for another three months. So I declined and nagged my GP to get me an urgent appointment with the consultant. - well, she didn't need much nagging, she did it straight away when she heard what was happening. And my medication was changed.

    Putting you on biologics is not within the remit of most registrars. This would need a consultant decision. So you need to demonstrate with your inflammatory markers and your DAS score that you are eligible and get consultant approval - this is, strangle often easier to do through the rheumy nurse as she is more willing to ask the consultant than the registrar who is supposed to be capable of managing without consultant approval most of the time.

    But it is very crass of the registrar to ask how you know about biologics! Most people with a long-term illness do their best to manage it themselves and that involves doing as much research about the condition as possible!

  • Don't apologise - it does sound as though things were rushed with no proper discussion and many of us will relate to this experience. Sorry it's left you so cross. I don't know how long you've been diagnosed or taking MTX and Sulfa for but they won't consider biologic drugs until you have taken MTX for at least six months.

    Also your DAS28 (28 joints examined) needs to be over about 5.1 I believe so should be in the high disease activity category still after 6 months of MTX or more. Mine was 6.1 after 8 months and having tried two DMARDs and I still didn't qualify so they may need some convincing depending how long you've been on the DMARDs and how high your DAS was.

    He shouldn't be questioning that you know about the Biologic drugs though - that makes them sound like some stash of gold they keep hidden!

    If you google DAS28 you can assess yourself and get a rough idea of how high you scored. Hope you feel better soon. X

  • Hello

    If you have been offered a Pain Management Course I would take it like a shot.

    Would you not feel a great deal better, managing your drugs and learning how to pace your life and how to relax.

    You would be trained in the use of TENS as well and if there is something like treatments you will be pushed down the corridor to the relevant departments that would be proactive in the treatments they offer

    If you are wanting to go on Biologic medications, and you are now on a mass of medications. One thing you really need is to know, how to manage them It is no good pushing medications and not knowing the implications of taking them

    Please go to the Pain Management Course, it is a long time ago since I first attended and it was one of the most positive thing that I was advised to do.

    One of the main things we all need to do is understand our body and the pains we are suffering from,when we do this we facilitate ourselves and empower those who need to help us in our journey through the negative problems we have

    in our daily lives .Your Specialist is quite understandably shocked that you know what Biologics are. Knowing what medications are does not detract from having a course and actually knowing what that medication does and if that would suit you.

    We all need to make informed decisions regarding our disabilities and also need to take on board the contraindications that they can cause and any problems they could cause us on our journey. Pain Management can sometimes give you that insight

    All the very best, sorry for rant

    Good luck if you decide to go on your course


  • I think you should go and discuss further with your gp and ask them to get you a consultant appointment or you could ring the Rheumy nurse and ask them to discuss it further with the consultant or give you some support.

    I think also bob makes a valid point about the helpfulness of pain clinics. I would love to be offered that and think I will ask on my next appointment !!

    Hope you feel better soon though, it sounds like you are having a bad and frustrating time at the moment xx

  • Hi, I was referred to the Pain Clinic and it has been brilliant. The Consultant was so supportive and he is going on a journey with me. He said there was no cure but he would help me to manage my pain with support and other treatments. He did not think I was mad or imagining it!!! I am on a drug to try and block the pain from my brain. He also told me how to start a new drug and that I had to listen to my body not the drug. I am no medication for my RA as have reacted to most quite badly!!! He was so helpful and explained the 3 week period of a new drug which made so much sense. He said that I will have to live with my chronic pain but it's how we do that, and he was here to make sure I did. I had to fight to get to the pain clinic but my RA Consultant helped. I wish you all the best but I would go for the Pain Clinic as you've nothing to lose and maybe a lot to gain. Take care Michelle.

  • Just a thought----my rheumatologist told me they try to avoid biologics when possible because of the list of side effects they have. It is not worth the risks unless absolutely necessary.

  • I don't know what the process is exactly in the UK (I'm in Sydney, Aus), but here, like another commenter said, they won't put you on biologics until you've 'failed' on methotrexate (and you've been on it for 6 months). It's really expensive, and costs the govt heaps (my rheumy said they're being prescribed for all sorts of things too). I'm not exactly sure, but I think the dose I'm on is equivalent to $12 - $15000/year - it's in their interest to try everything else first, and sometimes the meds take a while to work (hence the 6 month waiting period I guess). I started having trouble out of the blue in August 2012, just with one knee - by the end of the year I was using a stick, and then suddenly it hit my other knee too (over 24 - 48 hrs). I had this idea that I wanted to avoid the serious meds - my doctor was supportive - she's into the antibiotic protocol - but by May 2013 I also had significant problems with my left foot (toes and ankle), both hands, wrist, elbow and shoulders, a lot of fatigue, pain, and my blood tests showed inflammatory markers that had jumped significantly - think my CRP level jumped from 60 to 120 (by this stage I was on an antibiotic treatment which had initially seemed like it was working, naproxen, tramadol, and plaquenil). Doc said I needed stronger stuff or risked permanent damage - sent me to a rheumy. He gave me 3 infusions of steroids (3000mg over 10 days) and started me on Sulfasalazine, (steroids made me feel great, I wanted to throw the kids in the car and go on holiday, but it only lasted for about two or three days). Added methotrexate 10mg/week, then increased the dose to 20mg when it wasn't working. I felt somewhat better(ish), then my CRP level doubled again in a four week period. After 6 months on methotrexate he put me on the biologic Humira - after my first injection I put my crutch down and haven't picked it up since - I feel relatively normal (10 weeks now). My hand still has issues, my foot too, and my knees are far from perfect, but I can walk, I have energy, I can squeeze a bottle of shampoo, open jars, get into and out of bed without help. My ESR and CRP are back to normal levels. My pain level is about comparable to 'normal' aches and pains - as if I had been to the gym or something (I'd describe my joints as 'a bit sore'). I know they don't work for everyone, but for me they have been a godsend. If nothing else is working for you then you might need to advocate for a different treatment (like biologics), but try and find out the exact regulations in your area so you understand the hoops you (and your doctors) have to jump through. Good luck.

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