Thank you. I am learning so much about pmr and medications. LDN is a compounded drug that can only be purchased through a compounding pharmacy. None of the pharmacists that I spoke with at various pharmacies were aware of this. I finally called a local hospital pharmacy and he told me to call a compounding pharmacy. Thankfully we have one in Reno and I was able to fill the prescription yesterday.
And let me tell you about pricing. I was initially told $32 per pill so almost a $1000 for a month. Then the pharmacist at CVS told me he had a discount card that would bring it down to $189. Then after he tried to order it he said it wasn’t available. When I finally contacted the compounding pharmacy the price was $55 for 30 days.
So I took one last night before bed and didn’t notice significant pain relief but will continue to take for a month and hopefully the neuropathy will go away.
I think the body reacts any virus or germ invasion and that vaccinations do that too …as they are supposed to …now we are getting Covid vaccines that are setting off flairs in PMR …think it’s the nature of any vacccine but the things they prevent are worse so I still get every vaccine I can .
Interesting. I too have peripheral neuropathy. I got PMR after a Pfizer booster in Feb 2021, then Covid about a month later. I had a good GP who diagnosed PMR early and put me on Pred but with suspected GCA I was on 60mg within 6 weeks. It was a quick taper over a couple of weeks to about 20mg then to 0mg over the next 12 months. So I’m now in remission. 💃🤞I had peripheral neuropathy in feet and hands from quite early on. I’ve always thought it was the Covid.
Now I still have it in my feet (mostly front half) with occasional tingles in my hands. In my feet it’s more annoying than painful. I’m getting better at ignoring it and try to keep moving, eat low sugar and low carb. In bed when my feet are warm it almost goes away. I also have Bronchiectasis and MAC (stable) so have a double interest in trying to keep inflammation levels low.
Interesting. I too have peripheral neuropathy. I got PMR after a Pfizer booster in Feb 2021, then Covid about a month later. I had a good GP who diagnosed PMR early and put me on Pred but with suspected GCA I was on 60mg within 6 weeks. It was a quick taper over a couple of weeks to about 20mg then to 0mg over the next 12 months. So I’m now in remission. 💃🤞I had peripheral neuropathy in feet and hands from quite early on. I’ve always thought it was the Covid.
Now I still have it in my feet (mostly front half) with occasional tingles in my hands. In my feet it’s more annoying than painful. I’m getting better at ignoring it and try to keep moving, eat low sugar and low carb. In bed when my feet are warm it almost goes away. I also have Bronchiectasis and MAC (stable) so have a double interest in trying to keep inflammation levels low.
I too, have peripheral neuropathy mainly in my feet , just very occasional tingling in hands. It showed straight away when I started taking prednisolone for GCA back in August , 2022. I challenged my rheumatologist that it was caused by the prednisolone and he denied it, but for me , the coincidence was too great. Now , perhaps it may have been caused by becoming pre diabetic from the prednisolone . I'm down to 6 mg now , trickling down half mg every 10 days until I reach 5 mg.
I am now officially diabetic and trying to eat low carb , high protein . My feet don't seem to have improved , perhaps a little. Trouble is that I have gone from being good on my feet for an 81 year old, to being unsure and quite cautious. My GCA seems to be in remission so maybe I just have to be grateful for any improvements at my age.
I too, have peripheral neuropathy mainly in my feet , just very occasional tingling in hands. It showed straight away when I started taking prednisolone for GCA back in August , 2022. I challenged my rheumatologist that it was caused by the prednisolone and he denied it, but for me , the coincidence was too great. Now , perhaps it may have been caused by becoming pre diabetic from the prednisolone . I'm down to 6 mg now , trickling down half mg every 10 days until I reach 5 mg.
I am now officially diabetic and trying to eat low carb , high protein . My feet don't seem to have improved , perhaps a little. Trouble is that I have gone from being good on my feet for an 81 year old, to being unsure and quite cautious. My GCA seems to be in remission so maybe I just have to be grateful for any improvements at my age.
I’m sorry to hear that. I tapered off prednisone about 31/2 months ago. Then a month ago I developed neuropathy. I’m 76 and don’t know what to do about the pain in my feet. I can’t sleep and I’m fairly miserable.
I’m sorry to hear that. I tapered off prednisone about 31/2 months ago. Then a month ago I developed neuropathy. I’m 76 and don’t know what to do about the pain in my feet. I can’t sleep and I’m fairly miserable.
Have you tried wearing infrared socks? When the body loses heat the ceramics in the infrared socks return it to the feet in the form of infrared waves. Helps to boost circulation and get more oxygen into the area. If you give them a go please get a quality pair.
I used infrared clothing to sleep in when I was first diagnosed with polymyalgia and found it helpful.
Some people also wear pressure stockings, but I would try the infrared stockings first.
Sadly there seems to be little research done about neuropathy partly because so far there is no cure or even safe drugs to to treat what can be quite a debilitating problem. I was referred to a neurologist and technician gave me a stimulus test on both legs and arms[ don't know the correct name for it]. It showed that I had sensory neuropathy not muscular. Apart from this diagnosis no health professionals want to talk about it because there seems to be nothing they can do apart from pain killers. I'm lucky I suppose in that I have no pain so far but I do have the "wobbles" when I walk which is very annoying. There are various types of footwear available to perhaps help . One could spend quite a lot of money on these items with varying relief. The pro Tens helps some people giving an electrical impulse which relieves the pain. Acupuncture may help some sufferers . Of course you have to try these various treatments in order to see if they work and it all COSTS. The worst thing for you is the lack of sleep caused by pain. I hope you get some help from the various comments from this forum. Best wishes.
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Thank you. I am learning so much about pmr and medications. LDN is a compounded drug that can only be purchased through a compounding pharmacy. None of the pharmacists that I spoke with at various pharmacies were aware of this. I finally called a local hospital pharmacy and he told me to call a compounding pharmacy. Thankfully we have one in Reno and I was able to fill the prescription yesterday.
And let me tell you about pricing. I was initially told $32 per pill so almost a $1000 for a month. Then the pharmacist at CVS told me he had a discount card that would bring it down to $189. Then after he tried to order it he said it wasn’t available. When I finally contacted the compounding pharmacy the price was $55 for 30 days.
So I took one last night before bed and didn’t notice significant pain relief but will continue to take for a month and hopefully the neuropathy will go away.
I think the body reacts any virus or germ invasion and that vaccinations do that too …as they are supposed to …now we are getting Covid vaccines that are setting off flairs in PMR …think it’s the nature of any vacccine but the things they prevent are worse so I still get every vaccine I can .
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1 ReactionYep. Had an EMT done to confirm neuropathy. Don’t think there’s a cure but it’s good to know.
Has anyone else developed neuropathy after pmr has gone into remission and they have tapered off prednisone?
Interesting. I too have peripheral neuropathy. I got PMR after a Pfizer booster in Feb 2021, then Covid about a month later. I had a good GP who diagnosed PMR early and put me on Pred but with suspected GCA I was on 60mg within 6 weeks. It was a quick taper over a couple of weeks to about 20mg then to 0mg over the next 12 months. So I’m now in remission. 💃🤞I had peripheral neuropathy in feet and hands from quite early on. I’ve always thought it was the Covid.
Now I still have it in my feet (mostly front half) with occasional tingles in my hands. In my feet it’s more annoying than painful. I’m getting better at ignoring it and try to keep moving, eat low sugar and low carb. In bed when my feet are warm it almost goes away. I also have Bronchiectasis and MAC (stable) so have a double interest in trying to keep inflammation levels low.
-
Like -
Helpful -
Hug
1 ReactionI too, have peripheral neuropathy mainly in my feet , just very occasional tingling in hands. It showed straight away when I started taking prednisolone for GCA back in August , 2022. I challenged my rheumatologist that it was caused by the prednisolone and he denied it, but for me , the coincidence was too great. Now , perhaps it may have been caused by becoming pre diabetic from the prednisolone . I'm down to 6 mg now , trickling down half mg every 10 days until I reach 5 mg.
I am now officially diabetic and trying to eat low carb , high protein . My feet don't seem to have improved , perhaps a little. Trouble is that I have gone from being good on my feet for an 81 year old, to being unsure and quite cautious. My GCA seems to be in remission so maybe I just have to be grateful for any improvements at my age.
I’m sorry to hear that. I tapered off prednisone about 31/2 months ago. Then a month ago I developed neuropathy. I’m 76 and don’t know what to do about the pain in my feet. I can’t sleep and I’m fairly miserable.
Have you tried wearing infrared socks? When the body loses heat the ceramics in the infrared socks return it to the feet in the form of infrared waves. Helps to boost circulation and get more oxygen into the area. If you give them a go please get a quality pair.
I used infrared clothing to sleep in when I was first diagnosed with polymyalgia and found it helpful.
Some people also wear pressure stockings, but I would try the infrared stockings first.
Sadly there seems to be little research done about neuropathy partly because so far there is no cure or even safe drugs to to treat what can be quite a debilitating problem. I was referred to a neurologist and technician gave me a stimulus test on both legs and arms[ don't know the correct name for it]. It showed that I had sensory neuropathy not muscular. Apart from this diagnosis no health professionals want to talk about it because there seems to be nothing they can do apart from pain killers. I'm lucky I suppose in that I have no pain so far but I do have the "wobbles" when I walk which is very annoying. There are various types of footwear available to perhaps help . One could spend quite a lot of money on these items with varying relief. The pro Tens helps some people giving an electrical impulse which relieves the pain. Acupuncture may help some sufferers . Of course you have to try these various treatments in order to see if they work and it all COSTS. The worst thing for you is the lack of sleep caused by pain. I hope you get some help from the various comments from this forum. Best wishes.