Hi there fellow sufferers.
So in a bid to try and get off these drugs and find something with less side effects I have been considering CBD oil.
Have read some of the research which sounds quite positive but I'm keen to speak to people who may use it as that's got to be the best recommendation?
It's a question that's been asked many times. Maybe take a look to the right of your post under Related Posts, continue by tapping view more posts at the bottom of those displayed & you'll have a start there. If you want more just use the Search box.
It's no replacement for the meds which are available to treat RD but might be helpful as a pain relief option. Always discuss with your Rheumy though, especially if you think it could replace traditional meds.
I agree with nmh....if you are doing well on your present drug regime speak to your rheumatologist to ask if you can add CBD .....
I would be very wary of stopping a successful Dmard to try the Unknown........sometimes if you stop taking X ...then find you really needed it, when you restart ...... it either doesn't work or works less well.
Another point to discuss is even if the CBD helps with pain ...what happens to your Joints?
Big decisions to be made.
I have cmt and arthritis and Reynards. My muscles don’t work very well at all, to the point of it being difficult to get food in my mouth without it going everywhere, difficulty dressing and walking. I decided to give the cbd oil a go. Started with capsules and thought they helped a bit, then bought the actual cbd oil with a dropper. I take it 2 or 3 times a day and have found it a great help. I can control my arms and even bake a cake, walk a lot better and find it easier to dress. It’s not a miracle cure but helps a lot. I bought the cheaper one first then a more expensive one. I think the cheaper one was almost as good but none of them are exactly cheap. I find it’s worth the money though.
I seriously doubt you will find a rheumatologist that will agree that replacing a DMARD / biologic with CBD is a good idea.
Adding it in to your current regime may be an option, some seem to find it helps but I’d be surprised if it did that much with regards active RA.
AgedCrone makes a good point about stopping medication and then not having the same response when you restart it. I have been in remission for a few years and we have only just started reducing Humira (to 4 weekly from 2 weekly) to see how I get on (so far so good) with a view to stopping it entirely after 1 year. I am concerned that when I stop I may have a flare and then the Humira might not work, but I have to balance that with the potential side-effects of taking Humira for the rest of my life.
There are no easy choices with this condition.
🙏🏻
I was going to write a post about decreasing RA medication. I have been in so called remission for a few years and was told to halve my Sulfasalazine from 4 a day to 2 at my April appointment. Everything was fine for 3 weeks and then bang, I was plunged into the most horrendous flare I’ve ever had. Even though I eventually went back up to the 4 a day my RA has never gone back to being controlled. I’ve had the most pain I’ve ever had since April . Managed to get an emergency appointment with the Locum RA in the hospital clinic last month who told me the Sulfasalazine wasn’t working and that was why I was in so much pain. Adviced going up to 5 a day and then 6? Gave me steroid tablets too. Unfortunately increasing my medication made me really ill , so had to go back to the 4 a day. Have to wait now for my regular consultant appointment in November to sort myself out but firmly believe decreasing my medication has been the reason I’ve had such a bad flare up . Maybe you won’t, but don’t wait as long as I did before doing something about it.
I'm a firm believer in "If it ain't broke don't try to fix it"! If your meds are working why try to change to something that you think sounds better ...to you, but your Rheumy disagrees?
OK not at all scientific, but after 20 years I look back on how awful I have felt & I don't want that sort of pain ever again. Even when I read of the horrors that Mtx can cause I still agreed to take it, & I had 7 great years.
I know the drugs we take can have awful side effects ...but if what I'm taking now keeps me comfortable I'll stick with it.
Luckily I accepted to take Dmards as soon as I was diagnosed & although quite a few disagreed with me, I have no major joint problems. It hasn't been a walk in the park, but I think I'm better than I would have been if I had refused to take my Rheumatologist's advice every time I had a bad reaction. He is one of the good guys & really looks after his patients & makes sure his team does too.
However I do appreciate if I were younger I may think differently & with my Rheumy's agreement may well have tried CBD in addition, not instead of my prescribed meds.
Hi barbieg
I’m very sorry to hear that, this is the risk isn’t it? When you say ‘so called remission’, how did you personally feel (regardless of your blood test results)? Would you say that it felt like there was zero active inflammation or did you still feel that it was rumbling along in the background, so to speak?
For me I have been in so called remission for over 5 years, probably longer according to bloods, but it is only in the last 2 - 3 years that I have genuinely felt that there was little to no disease activity (pretty much since I gave up smoking...) and during that time my CRP and ESR have gone from being ‘technically remission’ to absolute ‘normal’ for a person without RA.
I can’t say as I feel like I used to before the dreaded RA started, but I have other health issues, have had a stressful time of late, have had a lot of problems getting off various meds that I no longer needed (or in the case of pregabalin and amitryptaline never really did need 😡) and am 20 years older, so maybe that’s why. Hard to tell sometimes what’s RA and what’s something totally different.
I did discuss in depth with my Rheumatologist, and I didn’t go in and insist on anything - I just asked the question and this was the approach we both decided was worth (carefully) attempting. If I get even a sniff of any rebound effect I will be on it instantly, and I will make sure that this is taken into account before I stop taking Humira, so that I don’t end up in limbo waiting to get back on the meds or for an appointment again like you seem to have found yourself.
And yes, your situation is a good warning / reminder to us all that reducing / stopping the meds might not always be a good idea. There are a few reasons why I’m prepared to try though, not least because I was originally diagnosed (ok, 20 years ago but...) with reactive arthritis and despite the severity of it, the joint damage I have suffered (3 replacements) and the length of time it took to find the best meds for me, it does kind of feel like it has gone away (for now?).
Time will tell I guess, and I’m not doing it without thinking long and hard. We figured a year on half dose (effectively) would give us an indication as to whether it was likely to cause issues, and even if I end up staying on half the dose, it’s still less of a physical burden than carrying on on full dose would have been.
I hope you find some relief soon, I think in your position I would be looking at speeding up the process even if it meant throwing some money at the problem and seeing if I could see one of my rheumy team privately or something. Might not be possible, but could be worth the £200 it would cost for a private appointment (maybe a conversation with the consultant’s secretary?).
Good luck.
🙏🏻
I have always been on Sulfasalazine since I was diagnosed 17yrs ago , but was also diagnosed with Fibromyalgia 30yrs ago. The Sulfasalazine has always worked for me until I halved the dose in April and I had felt very little pain before that. Always had the fatigue too. Have had no visible signs of the RA other than a slight swollen hands , so I was really feeling good. I have always been prescribed Lodine (a ante inflammatory) to go with the Sulfasalazine and have realised this is helping me more than anything. It is quite strong but only works for a few hours. I am going to ring my consultants secretary tomorrow to see what she suggests. I will never cut my medication again.
When you say ‘slight swollen hands’ it makes me think that you still had some active inflammation going on, even if only a minimal amount?
I’m hoping that is the difference, because the only ‘lumpy’ or swollen bits I have are permanent damage rather than current inflammation, I (and the rheumy) think.
Good luck with the secretary - I hope they can suggest a way of speeding your next appointment up.
🙏🏻
Been taken off Benepali as it wasn’t doing anything for me. Still on mtx at 25mg weekly. Asked my Rheumy about cbd oil and he saw no reason why I shouldn’t try it. I bought the capsules from Grape Tree (very expensive,) but will try anything to alleviate the pain in hands and feet, only been on it a week, no significant changes as of yet, will let you know if I get any relief, but I do have a number of other things causing pain too. Waiting to go to pain clinic to see what they can offer that I can actually tolerate. Rheumy now left my hospital for Isle of Wight, not got a new one yet. Will try the oil if capsules don’t deliver any relief.
Good luck if you decide to try the cbd oil, but I wouldn’t stop any prescribed Meds as you may make things a lot worse. Speak to Rheumy or nurse for their opinion.
Jan
I've tried cbd oil and it did help me sleep better but no noticeable effect on RA or pain. However, I'm currently taking Golden Paste in almond milk twice a day and it does seem to be working on the pain and inflammation. It's also helping with tummy problems that I used to get following mtx injections.
Hi Minty. Thank you for your reply. Turmeric is also something I'm interested in trying. When you say tummy problems is that nausea or constipation? I struggled constantly with constipation!!
It both, it's cartainly cured the constipation from the coedine and stopped my morning nausea. I started on 1/4 tsp twice daily and now take 3/4 tsp each time. That seems the ideal dose for me. There's a good fb group which has loads of info and support, Turmeric users UK
Hi.
Can I ask you what medication you are on- do you take the turmeric paste every day? Where do you get your ingredients please? ☺
Hi Freckle, I'm on Enbrel and mtx injections and I take the gp twice a day, although not within 2 hours of my injection. I get the ingredients from the local supermarket. Asda is good for larger bags of turmeric although the small pots from Aldi or Lidl are just as good. I use the cold pressed rapeseed oil or coconut oil from Aldi and the black peppercorns from anywhere. Hope this helps as it certainly seems to work for me.
CBD oil has been suggested several times to me by my GP and two others at the hospital. I wonder
If you are in a bad place Minty & your doctors don't object....what have you got to lose? CBD is supposedly non addictive, doesn' cause hallucinations & gives some people great relief.... You could be one of them!
I am fine just struggling along getting there, back in the hospital for three hours tomorrow afternoon dialysis etc. Just I am not taking tramadol for pain and also off the pain injections, on steroids and ra stuff plus heart meds and cholesterol pills, but am suffering in pain but trying to manage it on my own as I don’t like them or side effects.
Write down all your pain & go through your options with your doctors. They are the only ones who can help you. Stopping your pain meds will stress you & push up your BP which is the last thing you need right now.
I know side effects are distressing, but sometimes they are worth putting up with when you have multiple conditions to cope with.
Maybe ask your doctor to arrange a meeting with the hospital pharmacist...I have found them very helpful in the past . They suggested one med I was taking was being completely knocked out by another drug,& that solved a lot of pain issues.
Onwards & upwards Minty!
I had a meeting with the pharmacist and rheumatoid consultant last week as GP made an error with a statin and other meds causing problems. I did consider posting the letter on here from consultant to my pharmacist and doctors surgery but not a good idea to cause problems when people are trying to help as we all make mistakes
Tramadol Can be very addictive
That is good to hear Minty that your doctors are on the ball & in tune with the Pharmacist.
At my GP surgery we now have a pharmacist on staff who does the annual prescription reviews....& she is actually interested why you take each drug.Before she came the GP just took BP, & asked if you were OK on your meds...a complete waste of a doctor's time when he could be seeing a patient who needed a diagnosis.
It's early yet, but I do hope things improve after your surgery & you can get on with your move to civilisation!
I'm now going to paint my back gate before the primer I put on weeks ago disappears!
I have just started taking cbd oil and am only on day 3. So far I have found no relief from it but it’s early days yet. I will remain on other meds but am hoping to be able to stop cocodamol as I hate it’s side effects. It has to be worth a try with pain relieve but it isn’t suppose to replace DMARDS or biologics that prevent the joint damage.
CBD oil in a lotion helps to take the edge off the pain in my hands, feet, and neck. It doesn't go away, but it knocks it down enough so that I can sleep for a few hours instead of waking up every hour or two.
I tried the drops under my tongue and had a lovely (not really) reaction to it. My tongue and that side of my mouth swelled up. I put it in some tea and didn't have any reaction. I think it was just part of oral allergy syndrome for me, so getting it down quick instead of letting it sit there worked better. However, it didn't really relieve the pain any more or less than the lotion, but it did make me a lot sleepier.
The good thing was that I woke feeling really rested, not the foggy, maybe you rested way I feel normally, or after taking a traditional sleep medication.
I don't think I'd trade off traditional medications for it at this point, but adding it in has been beneficial for sleep, if nothing else.
Hi, I've just read your post, ive been on CBD oil for 2 weeks now and not found any difference yet! However I'm gradually increasing my dose as advised by the assistant, im taking 3drops morning & night atm, in the hope of decreasing the tramadol! I am at present on Cimzia injections and my rheumy nurse dosent have a problem with me taking CBD oil. Watch my post as I'll keep you all informed how I go on. Merry Christmas 🎄🎁x
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