Advice needed: Going back to NHS after going private.

[N1994]

Hi guys

I've been going to my local LUPUS outpatient clinic since I was first diagnosed three years ago. I was diagnosed with pericarditis that resulted in horrible chest pain and I was put on hydroxy & steroids for two years without any improvement. I then stopped the steroids for a year and noticed some improvement until I suddenly developed terrible joint pain this June and during that time my rheumy didn't help much, instead she told me to take paracetamol and that she'll see me in 8 weeks after her annual leave so if I don't get better she'll send me for an MRI then. I was in so much pain I couldn't walk at all and had to be put on a wheelchair to go to the toilet. I called my GP and he then prescribed me 150mg of Dicloflex three times a day and thankfully it numbed the pain. I was going on a holiday to Egypt so I went to see a doc there and he prescribed me Mxt, folic acid, One Alpha and put me on 400mg of hydroxy instead of 200mg. My joint pain went away within weeks and I was able to walk normally without needing pain killers for the first time in months.

So now I have my 8 weeks appointment with my rheumy and I am not sure how to tell her I went somewhere else for treatment. I honestly felt terrible for months and she didn't offer any strong painkillers besides naproxen and paracetamol. Is anybody in the same situation? If so, please tell me how you dealt with it. I now need to be prescribed hydroxy every month instead of every two months as I now take double the dose I took but I feel she might tell me to go back to the dr who doubled my dose to get prescription because she doesn't want to be responsible for what happens if that makes sense?

Sorry for the rant!

Thank you

[skylark15]

Hi, N1994.

Two things: The dose of Hydroxychloroquinine can be 200m g twice daily (which is what I and thousands of others need), so your rheumatologist shouldn't quibble about it. Whay isn't your GP prescribing it, anyway? Ask him/her for a prescription for 56 or 60 tablets/month.

Secondly, you have every right to seek medical help whilst away from UK and as the prescribed meds helped, discuss it with your rheum. If she dismisses it or says she won't allow you to try using the same regime, then ask your GP to refer you to see a different rheum, even if it means going to a slightly less convenient clinic. Explain your reasons, especially the pain-control issue. Chin up and stick to your guns. and insist.

Good luck and keep us posted.

[N1994 in reply to skylark15]

Hi skylark15! Thank you very much for your help! I spoke to my rheumatologist and she agreed to continue on this treatment.

[Leecylou]

I would go to your rheumatologist and explain how you're feeling better after seeing the doctor on holiday and how glad you were that they were knowledgeable on lupus. I'm suffering with a second dose of pericarditis and sympathise with you. I'm still on 800mg of ibuprofen 3 X a day among other tablets. I do hope you feel better soon. If you don't get on very well with your rheumatologist ask to see someone else

Leecylou x

[N1994 in reply to Leecylou]

Hi Leecylou,

Thank you for your help! Hope you get well soon. I was in the exact same position as you with the painkillers until I was prescribed Colchicine by a cardiologist in Egypt and I can say I am pain free (except for when I exhaust myself). If you're still suffering from the awful chest pain then maybe you can mention this medicine to your rheumatologist? x

[alice_sportyauthor]

Make notes: You felt unwell and sort help from a Dr. They really shouldn't take offence at that. it is so hard to explain clearly how we are in the time we have with consultants, I think they should understand when we need to go to other Drs as well.

[N1994 in reply to alice_sportyauthor]

Hi Alice,

Thank you for your advice! That's how I've mentioned it to her and she agreed to continue on this treatment plan so I guess I was too stressed about it haha!

[Purpletop]

I'd just say that you had to urgently see someone and you knew that there wouldn't be any availability in her diary. Was the doctor you saw in Egypt? I can't really tell. In any case, she can either support the treatment change or refuse to support it. I doubt she'll refuse to support it if you say that it helped you and you're feeling better. If she does, however, I'd challenge her and ask why given that you're feeling so much better. If she's dodging the issue, I'd ask something like "it isn't a funds issue, is it? I would hate to be told that I should stay in pain just because the NHS wants to use those savings to give a dog holiday to someone else" (there was a recent article in the press about the wasteful way NHS uses its discretionary funds).

It isn't you that should feel guilty - it is your doctor that should feel mortified that she let you down.

[N1994 in reply to Purpletop]

Hi Purpletop!

Thank you for your help! She seemed a little surprised when I mentioned it but agreed to continue on the treatment as long as I go to my GP for bloods and the prescription which is perfect!

[Purpletop in reply to N1994]

Fab, well done x

[N1994]

Thank you all very much for help and I apologise for the extremely late reply! I did read all of the comments before seeing my rheumatologist and then couldn't access the internet for a while. Again thank you for your help! x