Thank you to those that referred me to Dr. Rod Hughes. I saw him today. It was an expensive outing - getting there was very complicated and as a private patient. I was absolutely worth it though and I would do it again in a heartbeat. It was such a different consultation. He engaged with me, listened and explained things and said I could ask my NHS GP to refer me to him as an NHS patient. He wasn't opposed to the CBD (cannabis oil) just said he heard it works for some people and whether that's placebo or not he does not know. Also was not opposed to the LDN (Low Dose Naltrexone) but could not give me a prescription for it.
Suggested I take a lowish dose of ant inflammatory when I need - for pain - if for instance when Ive overdone it s bit
He has given me a tapering protocol.
All round I feel better for seeing him.
Thanks again everyone.
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Slosh
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I missed your previous post, looking for a Rheumy, but just wanted to add my endorsement of Dr. Hughes, who is my 4th Rheumy and the only one I have seen on the NHS. He has helped me to accept that my PMR is not behaving itself at all and is always reassuring when I see him, which is in direct contrast to all the others. A much better service on the NHS with him than I ever got privately with the others.
Good to hear Suzy1959. Yes - he said he doesn't rely on blood tests much but on the clinical symptoms at the time. He is my third privat Rheumy - but hope to go NHS with him as I've 'fired' my medical insurance - they were useless and caused me so much stress every step of the way - apart from being pretty expensive on a Carers wage.
Yes Sheffieldjane - it certainly looks like it. I'm so glad PMPpro and someone else (forget e now) mentioned him to me. It was so different. I had started to think that all consultants in this country were just 'Demi gods' sitting in their ivory towers.
I am lucky in my Rheumatologist too Dr Mackie. PMRPro pointed me in her direction as well. Every consultation gives a little burst of healing. According to patients on this site too many Rheumatologists do the complete opposite, scaring and bullying their patients.
PMRPro is our good fairy.🦋
Demi gods is right, science boys and girls who have little emotional intelligence, should have stayed in the lab.
Hello Slosh.. l am so pleased that you had a Good Appointment with Dr Rod Hughes ..He is kind and understanding and a Good Listener.He is my 3rd Rheumatologist on this PMRjourney and the Best ..l still haven't been able to Decrease the steroids as much as l would like because once I get below 15..or 14:05mg steroid then l seem to get reoccurring problems with flares to my legs and have to go back up again. The last month has been unbearable because my Bowen Therapist has been away and the Bowen Therapy does help my Pain and Dr Hughes does allow this Therapy as long as it is gentle. I go back tomorrow and l can't wait. Is CBD (cannabis oil) legal as a few people have mentioned this oil to me? Isee Dr Hughes on the NHS but I was willing to go to him Privately..l hope by the time l see him in October that l can get down a bit further on the steroids..l wish you well on your tapering Regime .. Best wishes trish29
Hi trish29, I'm sorry that you are not able to get below that.
Yes he is lovely.
Yes CBD is legal in UK as it contains no THC. There is quite a good ethical company called CBD Btothers - but also others. However they are not allowed to advise or make claims (much like supplements) so there is a Facebook group CBD CONSUMER GROUP UK/EU - which is helpful for advice.
I may look into Biwen. But I'm a live in Carer and do get very little time off.
Thank you Slosh for this information..After 13 years of this condition it is disheartening to still be fairly high on the steroids but over these years l have got down to 5mg steroid a few times but then other problems have occurred..and of course as you get older you develop other things..l will see how my pain level is after being back to my lst Bowen tomorrow...l really like to go down the road of less chemicals in my body..thanks again .trish
I've been taking CBD for a month now from CBD Brothers. I am off of all opiates, only taken 4 paracetamol in the last month! I was taking the full dose if 8 every day. I think its helping with my arthritis and certainly helps ease stiffness. The nerve pain I had in my leg is not bothering me. I am still on 22mg of steroid but I noticed that my fatigue has improved and my tummy upsets have improved so it seems to help with side effects. So well worth it for me. My GP is of the opinion that he will be prescribing cbd in his career but only once big pharma have worked out how they can make money from it! We have had several discussions about it and he is encouraging me to keep taking it. We discussed placebo effect but can't put it all down to that as I have been on painkillers for 30+ years for a back injury. He admits he hasn't read all the research but knew enough to see it was helping. I am carrying on as I feel better. Well worth a try in my opinion.
I use CBD Brothers blue oil during the day. I started with 1 drop 2 x daily the first week then upped it to 2 drops x 2 a day. I take 2 drops of CBD Brothers purple oil at night. The two oils are made from different strains. The information is available on suggested dosage etc on the CBD users and consumers group on fb. Its in the files section.
During the day I have a vape pen with some cbd eliquid to use if I get breakthrough pain. I am a non smoker but inhaling in this way is the quickest way to get the cbd into the bloodstream. Again lots of info on the users group.
CBD Brothers website is being refurbed to bring it in line with MRHA guidelines but you can still order on there. Again there are other suppliers with good products. A list is available on the fb group.
I think the website is being updated or something. I am interested in this method of relieving symptoms. I would not know which product to buy and in what form. Dosage would be a puzzle.
As a child of the 60s 🌺🌈 has the intoxicating property been removed from these products? Or is that a helpful addition with the miserable conditions it is indicated for? I have certainly heard of campaigners with MS advocating its efficacy. This is for S4ndy.
Hi Sheffieldjane. It may be. Yes there is no THC which is the intoxicating part. Unfortunately it's still illegal here because it would have been helpful 😜
Please join the CBD CONSUMER GROUP UK/EU on Facebook. They are very helpful and can advise you better. They may also know why / when about the CBD Brothers website being down.
There is no THC in CBD oils or eliquids in the uk market. The products are legal in the uk. The MRHA has stated that cbd is to be classed as a medicine so things will be changing and this is why the suppliers are not able to give advice. A bit like what has happened with all herbal remedies in the uk.
As far as I know cbd is being used in palliative care, in cancer to manage pain and to help with the side effects of chemo. People are using it for fibromyalgia, ms and Parkinson's to help with stiffness, nerve pains and tremor. In depression and anxiety to help with mood. And of course for pain in lots of conditions. Some research has been done but hopefully lots more to come. There is one product called Sativex which has been developed by Bayer and is approved for MS but only available on NHS in Wales. In the rest of the uk you have to fund this privately which costs about £400 a month. Sativax contains THC and CBD and from what I have read does get people high. CBD oil doesn't do this and is a lot cheaper.
In other countries you can legally get medical marijuana where it has been decriminalised.
I am no expert and can only speak for myself but cbd is making a big difference to me. My GP is impressed how well its working with me and is encouraging me to keep on taking it and to chat to the rheumy about it too.
Hope this helps but please feel free to pm me if you want any further info.
Thank you for this useful information. It is silly for medical science to ignore a potent substance in nature that has probably been used medicinally by humans for centuries, just because of its recreational reputation.
Where is he based? I'm becoming tired of my doctor's attitude and IF I can get one who will listen to me, perhaps they would be kind enough to refer me o this kind consultant. It's such a debilitating condition!!!!!!!! I'm SO pleased for you that you have found a great doctor. Please keep us informed. Sending prayers and healing to everyone here .
I'm so glad for you that you have seen Dr Hughes he has been mentioned many times in this community. Please can you tell me how you use the cannabis oil. Is it just for pain relief? I could not make sense of what I found on the web.
Hi Anne - the CBD oils I get is from CBD brothers (see their website). Then I would say first joint a Facebook group like CBD CONSUMER GROUP UK/EU - many on there are very helpful and knowledgeable and will advise you about what to try. It is for pain relief, there is evidence that it lowers inflammation and can shrink tumours. Many take it for anxiety and insomnia to. I hope you give it a try and hope it helps.
I live in Surrey and have been so disappointed with my rheumy that I wrote to my GP requesting that he refer me to Dr Hughes. I'm hoping that he has agreed to refer me, but as it wasn't a face to face request, I'm not sure he has actioned it. I'm just waiting for the appointment details to drop through the letter box... Whatever happens, I won't be going back to my local rheumy as she's not at all helpful and just grumbles at me for not coming off my steroids quicker. I have to rely on an NHS referral, so it'll be St Peter's for me. I wish I lived further up north as Dr Mackie sounds amazing!
We all need to see someone who understands PMR/GCA, as from what I read on these sites, people have such difficult consultations with their rheumies and end up disheartened and miserable.
Dr Hughes suggested I take 200mg of an ant-inflammatory like ibuprofen - when I need - instead of upping my Pred.
I said I don't do well (my stomach) with anti-inflammatories and he said 200mg shouldn't be a problem. Sounds huge to me - but I don't know over the counter meds here in UK.
Hi Slosh, I only ever tried anti-inflam meds about 15 years ago, 400mg in one tablet dose, made me feel like I had a brick sitting in my stomach so stopped taking them. When I started with the PMR (I didn't know what it was at the time) my prescription pain killers gave no relief so I bought Tesco's own Ibuprofen, little white caplets 200mg to try. I took 2, (two or three times a day sometimes) and had no stomach problems with them at all (and they're cheap!)
The normal dose for ibuprofen is 200- 400mg with a maximum of 3200 mg/day. 200mg wouldn't do much for me - but if it works for you with the occasional dose fair enough.
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