Epic battle over change in treatment

[cathie]

I thought I'd update you on the latest stage in my attempt to introduce some reason into the withdrawal of treatment proposed by my rheumy at the beginning of October. I am quite stable on methotrexate in tablet form (yuk) and infliximab infusions. Following my queries about a face rash in the sun, she told me she thought I had drug induced lupus and that I was probably in remission so was going to withdraw all my RA meds. I begged for a stay of execution, as I was in turmoil following my father's death the day before. So the first time I wont have the anti-tnf will be in mid-January. Then after seeing her clinic letter to my GP I wrote her a list of questions and she agreed to allow me to continue with methotrexate.

In the meantime I made a private appointment to see a dermatologist who referred me to the wonderful NHS photobiology unit at Ninewells in Dundee. They were quite sure that I dont have lupus – and that the problem is a reaction to the perfume in skin / sun creams. This is really important because if it had been lupus it would have excluded a lot of the anti-tnf treatments.

Anyway I have been offered an appointment with the rheumy nurse at the beginning of January, but not as my GP requested, with the consultant. So I went to see my lovely GP this morning who agreed with me that I have lost trust with my present consultant and is going to write to ask if I can see someone else – and that my anti-tnf treatment continue until we can work out a clear way forward.

I have had a lot of encouragement from people on this forum – thankyou – and also a really helpful set of suggestions and clarifications from NRAS. I don’t like going private, but I think that this was money well spent, as this particular rheumy was not really prepared to listen to me and just sent out defensive letters. I’ve been given the name of a particular consultant in the same department who has a very good reputation and my GP is going to ask if I can be transferred to her. Rather a delicate operation – but with supportive GPs I seem to have made some headway. I just thought this might interest you – but also suggest ways of challenging diagnoses you aren’t happy with.

[watson3]

Brilliant news...

[126Jessie]

Wow! Good for you. I have had many an unsatisfactory experience over my 14 years with R.A. so I am so pleased with your news. You are right it has encouraged me to not accept poor treatment and speak up! Delighted for you and I hope it all works out well. xx

[cathie]

Thanks for your kind reactions! I have had two bad experiences with this doctor and another in England. They werent so much bad as narrow in their focus and I suspect, more interested in their research and their status than me (and their other patients). I'm so lucky to be with an excellent GP practice now and this morning my doctor was so supportive - I could feel that she was thinking that it might be good to give this rheumy a bit of a jolt so perhaps she might be more cautious in future.

XX

[Hidden]

Oh well done Cathie and I'm so pleased that you've at least been so fortunate with your GP. I often feel that having my GPs on side is more than half the battle because it empowers you and in a strange way you empower them by being proactive - so it becomes a case of teamwork which is really good for giving the consultants a kick up the backside when and if one is required. Lets hope the referral leads to you having the best rheumy in town! Xxxx

[Hidden]

Oh well done Cathie and I'm so pleased that you've at least been so fortunate with your GP. I often feel that having my GPs on side is more than half the battle because it empowers you and in a strange way you empower them by being proactive - so it becomes a case of teamwork which is really good for giving the consultants a kick up the backside when and if one is required. Lets hope the referral leads to you having the best rheumy in town! Xxxx

[cathie]

Fingers crossed! She does come with some low down and a personal recommendation so I feel positive about it. Tilda, I hope you're recovered from your mega cooking. Unfortunately i wont be able to cook tonight because Paddy is making an insert for the spice jar drawer. So we will have our patented reconstituted turkey dinner! Actually quite nice but not the wonderful turkey and ham pie I'd been planning. Our kitchen is completely taken over with tools and work benches - its just a small plywood divider - but I might have some plywood pieces I can paint on afterwards!

[Hidden]

Cathie, you have done good so far to make sure that your ra medication is not withdrawn completely. It is really frustrating that you have to go to such lengths, it is good to hear that the GP is very much backing you, that does help a lot.

[cathie]

Its quite a haul isnt it, and not over yet. But I think t hey may be more careful with me next time! And hopefully other patients

[earthwitch]

I'm so glad you didn't just accept everything that was going on and have challenged it. Also really glad that you have such a supportive GP that will help you through. Its not easy taking on the medical establishment, but I do think more people need to do it. It was such a ridiculous decision to withdraw all your meds like that, and does make you wonder how much it was just an easy budget decision for them, without thinking about the life they were affecting.

Good luck with it all, and I hope you can manage to keep on the infliximab while its all being sorted out.

[allanah]

You go girl !!!!!

Well done on challenging and getting treatment and hope that you following treatments will go well, thinking of you Axx

[cathie]

One thing I havent mentioned and which might be useful to some of you dears, is that the rheumy had a list of Other medical conditions one of which was Depression. Now I have been depressed (havent we all with this illness) but I dont suffer from clinical depression. One of my best and oldest friends does have it so I know the difference between the two. And after talking to her about it I challenged that and asked to have it removed from my records. I talked to my GP about it (this woman is rapidly approaching sainthood isnt she) and she agreed it was better off, but she could only record the depressed episode as closed. I was given anti-depressants in 2002 and dont remember ever taking them. ANyway I thought it would be worth flagging that up as something to avoid. My friend with clinical depression says that sometimes doctors put everything down to depression and are more likely to dismiss us without looking into the symptoms.

And yes, Earthwitch, I'm hoping they'll keep me on the infliximab until it can be properly investigated.

[earthwitch in reply to cathie]

Do I know that! I had mental health care ending something like 30 years ago (as a young adult when I was going through lots of life changes) before seeing rheumatologists more recently, and would you believe it, they dragged that up and made it a prominent part of my health records - in spite of it not having even happened under the NHS and them having no clinical information about it! Thats one of the really big things that stopped me getting taken seriously because what they didn't know, they just made up. Like you, I'm having enormous difficulty getting reference to it taken out of my notes, or minimised to where it doesn't have an impact. They definitely have very selective vision when they look through old notes - find the stuff that contributes to a psych diagnosis or can otherwise be dismissed really easy, and totally ignore the stuff that would contribute to a definite physical diagnosis.

I think also there is far too much handing out of antidepressants "to help with pain" but not actually using them in the right way, and really just on the assumption that people were clinically depressed when they weren't. I've challenged doctors on what they were offering me and how useful it would be when I clearly don't have clinical depression, though I have agreed happily to trying anti-d's for pain modification (unfortunately they don't give enough positive benefit over side effects for me though.). Interestingly the last lot I tried made me really blah and mentally lethargic, but with quite random impulsive thoughts - if I hadn't been so grounded (and not depressed) I could easily have done something really bad to myself. Coming off that lot after 6 months was a breath of fresh air and I couldn't believe how much my motivation improved!

[cathie in reply to earthwitch]

My GP looked and said she couldn't remove all mention of taking anti-depressants from my notes but she could do something to the effect that the episode was closed. Its worth knowing this because I had no idea at the time that it was seen as significant and worth dredging up when it fitted their narrative. My daughter is a medical anthropologist and I'm more and more convinced of how thin is their knowledge. We need to use conventional medicine but as far as possible find out how they work and what the medicines do.

I suppose this is another reason to support campaigns that try to de-stigmatise mental health problems. Like the one that Stephen Fry has been pushing. Knowing someone very well who does have clinical depression really clarified things for me. One of the most creative people I know, but she has had to struggle to do things sometimes. I can recognise some of that, but not in such an acute form.

[joan_w]

So pleased to hear your news. It really makes the point that we have to fight for the treatment we believe is right for us and the more we know about our condition the better we can do this.

[cathie]

I wish I'd done this when I was first diagnosed. It took me about four years to get on to treatment that worked. Hopefully sharing the struggles and experiences will help us all to get there faster. And I think that will save money wont it in the wider perspective!

[mistymeana]

Good going Cathie. Those who have read my outpourings of woe will know I've had to go back to my GP to request a referral to a different consultant recently as I was very unhappy with the diagnosis I was given. She was very supportive but clearly thought my chosen consultant might says no. Good news is that he has agreed to see me and I go next Thursday (still having day-mares that I'll get there and find they've palmed me off on a registrar again tho). So, you see, it does happen and I'm sending positive vibes that you get the same result and manage to see someone experienced in your particular condition x

[Hidden]

Good news well done Cathie x

[cathie]

My nurse appt is tomorrow, timing isnt brilliant but i hope theyll have received my drs letter about changing consultant. When i think how hard it is toget biologics im reluctant to be bumped off. Hope your father is doing well and that you can start to destress. Ive been looking back on ra and think it was triggered by stress. So keep breathing!