Have been on steroids for 2 1/2 years and have reduced down to 3mg daily. My pain and stiffness have gradually returned as I reduce and so am feeling depressed about it now!! Amongst all the medications that I was prescribed was one called Hydroxychloroquine Sulphat which I stopped taking as I think it was the result of my loss and thinning of hair.
CBD oil
I have recently been told that taking some CBD oil might help with the control of stiffness and pain. CBD oil is an oil derived from the Hemp plant and is now availble in the UK. It has none of the dangers of pure Canabis products which is of course illegal in this country. Has anyone tried this to their benefit?
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suracon
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You have simply reduced too far - you are not reducing relentlessly to zero pred, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. What was the last dose at which you felt well? You need to go back to that or possibly slightly higher, get the pain and stiffness under control and then reduce back to the point just above where symptoms reappear. Whatever your doctors may have suggested - PMR does not disappear in 2 years for the majority of patients. About a quarter are off pred in under 2 years or so but remain at a higher risk for relapse at a later date. Half of patients take up to 4 to 6 years and the rest even longer. In a study in Italy a third of patients overall were found to still require pred at 6 years.
All that happens if you try to hurry off pred is that you have a relapse and have to start at a higher dose again. Slow and steady is the way to go.
Sorry, can't help with hemp oil - it is discussed now and again. Some people swear it helps, others were not so lucky.
Echo what PMRPro said... I’m at year 4, and still at 3.5 mg pred. Each attempt to drop lower resulted in a bump up to higher dose... back off the taper for a while, and see if things settle down.
I use CBD oil. It helps me with stiffness, fatigue and calms my digestion. Helps with Osteo pain but not PMR pain. So I managed to get off opiates but still need the Prednisolone to control the inflammation. Talk to your GP about CBD I have found mine to be very supportive. Everyone is different, all you can do is try it. Find a good supplier as some products are overpriced. Hope it works for you x
Thank you for that. The best product is made in UK but only sold in the States!! Have you any suggestions for me as there are soooo many on line. Have consulted my GP and am waiting for reply. Am curious to know what you define PMR pain. My symptoms are: Extreme stiffness if I remain still for more than half an hour which gradually fades away when I move around. Pain goes with the stiffness. Not in pain if I remain inactive unless I have spent some time being active (1-2 hrs) Then my whole body in pain! Sorry to be a bore!
Sounds very typical of PMR. Although pain that improves with activity is also typical of ankylosing spondylitis which, as I've said a few times, is easily confused with PMR and will respond to pred at higher doses. It should be ruled out.
I get stiffness if I sit too long or after activity. I also get pain in big muscles in thighs and arms, its hard to explain sorta burning throbbing ache. I don't get this when my symptoms are under control with pred. Nothing but Pred eases that pain.
CBD Brothers, Synergy of Nature, Holistic Hemp of Scotland are all good companies. Canavape or Synergy of Nature for vaping. I use CBD Brothers blue oil for daytime and green paste for pain and purple oil at night. A good way to start is with their green paste or oil which is fairly cheap and will help you decide if it works for you. Everyone is different. Pam St Clements (Gone to Pot)is using Love Hemp products and she has PMR she says it helps with the stiffness.
I don't know anything about Hydroxychloroquine Sulphat. I've experienced significant hair loss and thinning from the Prednisone which I've been on for a year. I'm down to 5mg per day since Aug and have stopped tapering. My body can't go lower. I have noticed that my hair isn't falling out as much but still is more so than before the PMR. I'm thinkng about trying the CBD oil as well. I've heard good things.
The Times of November 11th had a very interesting article about cannabis oil. You can buy CBD oil from the Holland and Barrett website, but the level of THC ( the psychoactive part) in it is only 0.05, which will only have a very minimal effect. I quote - It is important to have an element of THC with the oil to gain the benefits...Oxford University are running trials - watch this space.
I've only just heard about CBD. My husband has ordered some from Holland and Barrett so I'll let you all know how I get on. I'm currently tapering from 8 to 7.5 and still have back and shoulder pain and rib pain especially after eating. GP wondered if this could be indigestion. Have taken one tablet after dinner and so far no real pain in the rib area. Only time will tell!
It is certainly NOT a "treatment for GCA" - GCA is a serious systemic illness what causes a vasculitis which can affect your vision if the wrong arteries are affected. If that is the case, then the only immediate treament is high dose prednisolone to reduce the inflammation quickly and restore good blood flow. There are other drugs that assist in reducing the dose of pred but NO other drugs that replace pred at that point.
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