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Had appointment with the N.H.S rheumatologist today. He checked my joints for inflammation and read the blood tests that have reverted back into normal range, and then announced I was in remission. He wasn’t aware that I had gone elsewhere for treatment. I explained that as he had refused to prescribe Minocin, I was now going to a private clinic and had been on antibiotics for nine months. He admitted that he had been wrong and didn’t think it would’ve worked but would now write to my G.P so that he can prescribe them through the N.H.S. Through gritted teeth he said how happy he was for me but he looked livid, while I looked smug. I will still go to Dr E in Surrey as he understands this therapy and I like him, but if I run out of funds or he retires then I now have the written go ahead from a consultant rheumatologist.
Wow! Congratulations!!!
Remission is such wonderful news. You’ve made my day today. Keep going all the way to vibrant, wonderful health!
And what an incredible victory with swaying the mind of a traditional rheumy. That’s a double wow!
Yeepee!!! 😀 😎 😛
Krys@lemons wrote:
He checked my joints for inflammation and read the blood tests that have reverted back into normal range, and then announced I was in remission
That really is wonderful news, Lemons. You should go back and read all your earlier posts and the uncertainty you (like we all) feel about the treatment initially and just how far you’ve come in so short a space of time! It’s really remarkable, isn’t it?
Sadly, the rheumy’s response isn’t so unusual. I’m doubtful that one successful case will alter his approach to treatment, but perhaps he won’t be so dismissive when the next person asks to try the treatment. Hope so, as I know how difficult it is for UKers.
So, now you’re in confirmed remission, when can we start bugging you for your testimonial for the main site? 😆
Thanks for all your kind messages and yes Maz I promise I will write a testimonial, its the least I can do to say thank you . As I was sort of already thinking I was in remission due to not needing any kind of pain relief since last year, I had planned to write it on the anniversary of me joining this forum. Maz, I don’t like reading my old posts as they make me cringe, I come across as being so stroppy but I was just very scared. I do think the speed of my recovery is remarkable, less than nine months much quicker than I ever hoped for. I agree about the rheumatologist not changing his attitude towards Minocin , the reason he caved in with me was purely because I had him cornered. On his computer screen with my patient notes on it, I could see that he had written last year ” lady has requested Minocin and I have explained to her that she needs to treat new onset RA with methotrexate”. He couldn’t deny that the antibiotic had worked as I was living proof and sitting there in front of him with glowing skin, thick glossy hair, clear bright eyes, pain free and happy. In contrast the waiting room was full of very ill looking patients and I got talking to a few. They were all on the conventional meds but what struck me was that they were all still in terrible pain. One lady leant across and said to me “you don’t look like you need to be here ” and when I told her I had RA she was astounded. I left that waiting room having informed them all of the treatment I was on and this website. My goal now is to lose a bit of weight but I was pleased to see that Im not as heavy as I thought as the hospital scales were more forgiving than the ones in my bathroom 🙂 🙂 🙂
That is great news, I’m looking forward to being in your shoes one day soon. When you began AP, did you also carry on with anything else, like methotrexate? I’ve just last week started on AP and Dr E actually advised that I keep taking the mxt at the same time, at least in the beginning until my blood tests start coming back with more normal rheumatoid factor and sed rates. Then he said I could start to wean off the mxt. I’ve not been on mxt for very long, and I can actually see where it’s going and why rheumatologists think that it’s a good way to go, but I’m very keen not to be on it forever and I’d much rather be in remission!! Hence the AP.
Hi Lemons – So happy for you. So glad to confronted your NHS GP as they can be dismissive. Now the sun is shining here so enjoy it fully!
@MEmily wrote:
That is great news, I’m looking forward to being in your shoes one day soon. When you began AP, did you also carry on with anything else, like methotrexate? I’ve just last week started on AP and Dr E actually advised that I keep taking the mxt at the same time, at least in the beginning until my blood tests start coming back with more normal rheumatoid factor and sed rates. Then he said I could start to wean off the mxt. I’ve not been on mxt for very long, and I can actually see where it’s going and why rheumatologists think that it’s a good way to go, but I’m very keen not to be on it forever and I’d much rather be in remission!! Hence the AP.
I have only taken Minocin and nothing else. Do what you feel is best for yourself and always remember that doctors are just people too , but with a few letters after their names. Its your body and your choice, go with what feels right for you.
@lemons wrote:
Thanks for all your kind messages and yes Maz I promise I will write a testimonial, its the least I can do to say thank you . As I was sort of already thinking I was in remission due to not needing any kind of pain relief since last year, I had planned to write it on the anniversary of me joining this forum. Maz, I don’t like reading my old posts as they make me cringe, I come across as being so stroppy but I was just very scared.
Lemons, you are such a hoot! Don’t worry….you weren’t as stroppy as you think….just scared, just as we all feel when first diagnosed and in pain. It’ll be great to get your testimonial to add when you feel ready to do it. It will be a fantastic addition and so inspiring to others….and a wonderful way to “pay it forward.” Thanks!
The thing that is concerning about situations like the one you have experienced is the aura of power that is wielded over very unwell, vulnerable patients who are pretty much told they have no say in their own treatment, made to feel ridiculous for their opinions, and utterly powerless. This is not medicine, it’s oppression. People, like you, are important living examples, demonstrating the importance of self-advocacy and managing to maintain a voice in spite of this kind of oppression. A “consultant” is just that – a doctor one pays (with insurance, privately or with taxes) to consult for an opinion. If you don’t like that opinion, it’s okay to move on to find a consultant who is open to listening to your voice and is willing to work with a treatment plan that takes into account the risk/benefits to the patient (the true goal of medicine and not the ego of the consultant). Unfortunately, there are still doctors out there who lord it over vulnerable patients and these are dangerous people, because they’ve lost sight of why they went into medicine in the first place and the preservation of their egos become more important than patient care. If a patient gets well again from a chronic debilitating disease, this should be cause for celebration and hearty pats on the back, not “livid” utterances through “gritted teeth.” Did he not want you to get well again? This kind of reaction is shocking and pretty telling, isn’t it? Think we’ve heard it all here now…even patients being told that they must have been misdiagnosed with their rheumatic disease, because they are in remission. 🙄
Bet you gave that consultant a run for his money that day, especially if all the patients in that waiting room who followed you then went in to see him, saying, “I want what she had!” 😆
lemons, congrats! I’m SO jealous, but in a GOOD WAY! I hope you’ll stay in touch with us on the website and write a testimonial soon.. Thanks for sharing the great news- it gives us ALL hope!!
Woods
@Woods1977 wrote:
lemons, congrats! I’m SO jealous, but in a GOOD WAY! I hope you’ll stay in touch with us on the website and write a testimonial soon.. Thanks for sharing the great news- it gives us ALL hope!!
Woods
Thanks Woods, I will always stay in touch with this site. Why did you change your photo ? you cant see your face in the new one. Mind you having said that, I contemplated putting a pic of myself on here as its nice to put a face to the posts but then thought probably not a good idea. I had mentioned the Roadback to the rancid weasel of a rheumatologist and just imagine if he checked this site out and saw a photograph of me, his patient sent from a thousand hells !! He would then go on to read all the comments I have made about his wig ❗
Hey lemons…
To your point, I guess the lighting was kind of bad in this picture. 😉
I’m greatful that I’m not currently seeing Rheumatologist… I hate the word Rheumatologist, or any “variant” of the word. Anyway, best of luck on your continued success! We look forward to seeing your testimonial on the website- I love reading them!
Woods
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