Bloody hell Just been to lupus dermatologist was a different registrar so...

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  • Had the same today Deena with my rheumy...

    I told her to jog on...

    She is no longer my rheumatologist

  • Is it because they are naive and not researching. Is it because long term effects are not know or simply no profit for drug companies?

  • Doctors do not research ever ..... They only do what they learned in med school what drug reps tell them or what the BMA write period

  • Ha really! They told me to jog on ;(

  • God imagine if I'd mentioned cbd! She deffo would have called security on my ass

  • I would not tolerate that. When the GP screamed to my partner "Get out! This is not worth my job" - my partner left and I stayed and shouted back at him ie your 'job', what about his 'life'??. When I walked out of his room, patients in the waiting room applauded me for speaking out. It didn't stop there. I wrote to the practice manager and reported him/filed a complaint with the local health board. He got switched to the senior partner of the practice and if we have to see this joker of a Dr., he now treats us with the utmost respect. And yes, he now gets his LDN on the NHS! So no, do not accept this treatment from any medical profession. I certainly hope you asked for LDN to be documented on your records despite his/her knee jerk reaction - and if you haven't, please request this in your letter of complaint. Please do act, it's the only way to put a stop to this.

  • It's because it's off-label and the Govt are clamping down on the amount of off label meds Drs can prescribe. So they pretty much have their hands tied. Most Drs have a list of off label meds they feel comfortable prescribing because it's been licensed for one condition or another, but unfortunately LDN hasn't been licensed for any condition.

  • Xxxxxxx Yzzzzzz that seems so wrong. Guess I am truly thankful my PCP researched and approved it for me. He said he's actually excited to try something new and see if it works. Feel bad with all who gave closed mi dead docs

  • Wow! I just cried..

  • I agree Tina Fischer and not only that, because LDN is considered a 'specials' med - that means any pharmacy can charge what the heck they like to the NHS. Some pharmacies have been charging the NHS £500/month!!! Because they CAN - perfectly legal. This cost is then down to the GP practice to cough up and when it's this amount of money is another reason for a Dr to not 'risk' his licence.

  • And THAT is what started our campaign to get LDN approved - I was that damn angry!

  • Geez, I have to pay out of pocket but three months I think is very reasonable for here here in the States

  • I pay out of pocket too Tina Fischer, but my partner gets his prescription from his Dr and sends it to a pharmacy (Pharmacy Xpress here in the UK) where we know they only charge the NHS £18.50/month. Huge difference.

  • Xxxxxxx Yzzzzzz et al use pharmacyxpress uk they charge only 19 per script and are brilliant

  • Yes it is I am paying $53 USC for 90 days

  • BRAVO Jayne Crocker!!!

  • LDN and CBD/THC is the only way I can barely keep working cause I can feel half way normal and not so much pain !!

    I'd find a different doctor ! Screw her !!

  • Yes Bravo

  • So I'm on 2mg a day of Ldn (it seems to help enough), when my bottle is running out should I start weaning myself down? I'm so curious to see if my pain will come back or if my first flare will have subsided anyway x

  • This group's owner is David Richardson. Our campaign is called LDNNow

  • Xxxxxxx Yzzzzzz oh great thank you xxx

  • Someone called may name LOL - Hi Jayne Crocker - I founded the group, however Jayne and her reliable science based LDN information has supported this group from the early days.

  • Hi Deena Houghton why would you want ro reduce the LDN? there is no need to ween yourself down. LDN is not addictive - I was on LDN for 18 months and stopped for a couple of months with no discontinuous effects.

  • Jayne how do I share the dr Chris steel vid? Xx

  • Xxxxxxx Yzzzzzz you guys are awesome!

  • Xxxxxxx Yzzzzzz oh right, well in my head I'm thinking maybe my flare is over now and I'll go back to normal

  • Well you could experiment, to prove it to yourself, but is it worth risking another flare. Remember LDN works to inhibit inflammation, slow down the disease process and promote homeostasis in a non toxic manner.

  • Dr Chris Steele, MBE talks about Low Dose Naltrexone, LDN

  • Copy and paste the youtube link

  • Xxxxxxx Yzzzzzz I'm not sure what to do as it's my first flare that was building up over 8 months of stress then hit me out the blue on jan 7th

    I'm just so curious to see if a flare lasts forever or subsides x

  • Xxxxxxx Yzzzzzz oh perfect thank you xx

  • Understood.

    Flare's come and go ebb and wain. However there is an underlying disease progression that may not be obviously noticeable as flare symptoms are. That's why Rheumy suggest people with autoimmune go on a disease modifying drugs such as Hydroxychroquine for example.

  • Xxxxxxx Yzzzzzz have u tried that med? Does it stop a flare? X

  • Xxxxxxx Yzzzzzz works over a long period. Some people swear by it and it appears that it is more effective for Lupus than Sjogrens. It doesnt seem to be effective for sicca symptoms , its is better for mylaiga and joint pain.

    I was on it for about 9 months and it did help with joint pain but I kept getting bad headaches, and after being on LDN for about 3months I decided to to come off the Hydroxychroquine. Its OK to use both together.

  • Xxxxxxx Yzzzzzz oh interesting ok thank you x I'd rather stick to ldn but got that other stuff sitting there if I need extra help x

  • A short tapering course of steroids can be very efffective to reduce flare symptoms - but not a good idea for long term use.

  • Xxxxxxx Yzzzzzz she gave me a script for that too x

  • Is Lupus your diagnosis Deena Houghton?

  • Xxxxxxx Yzzzzzz I have both lupus types and then was diagnosed SS

    I'm not sure if my flare is lupus or ss or possibly even fibromyalgia as all my symptoms matches each disease? X

  • Holy crap Deena

  • Xxxxxxx Yzzzzzz I'm just convinced my flare up has waned.. (actually don't think it has) its just wishful thinking

    Like do I have to stay on ldn forever now?

  • I spoke with my client today, she sees the same dermatologist who we love but last time my client went, she saw the same woman I saw yesterday, my client ended up putting in a complaint against her .

  • Steroids gave me type 1 Diabetes, horrible disease.

  • Oh god;( how long were u on them? Xx

  • Maybe 6 months

  • Xxxxxxx Yzzzzzz oh wow and it caused havoc in that time;( I'm sorry xxxx

  • Deena Houghton I agree Deena! I've been in this group for a long while and David Richardson, Jayne Crocker and others provide scientifically based information on LDN. They are incredibly helpful!

  • Xxxxxxx Yzzzzzz I agree! I'd still be in horendos pain without this group

  • Xxxxxxx YzzzzzzJayne Crocker

  • Xxxxxxx Yzzzzzz did it cause a true autoimmune Type 1, or 'just' cause a loss of beta cell function, causing insulin to have to be given?

  • This people don't care about anything that is wrong with us they don't even try to understand what we going through!!They call them selfs doctors with no compassion

  • Steroids also KILL your Adrenals!! Think you're tired now?? I have Adrenal Fatigue as well and I'm dog tired all the time! Trying to make it 1 more year till retirement and Medicare!!

  • I have had a similar experience. My usual rheumatologist was unwell and during his illness time I saw someone else in his team, who when I asked if I could try LDN agreed. Now my old rheumatologist has returned and he is now unsure about LDN, and another member of his team also flatly refused to prescribe me LDN. After a 2 week panic as I was running low on LDN, the rhematologist who agreed to me taking LDN, wrote me a prescription. How can a team of rheumatologists have such different views - especially when they can see on my notes that I have been taking LDN for just over a year now. Terrible!

  • Omg that's crazy x