On another website a PMR patient mentioned the medication LDN. Has anyone here tried it, alone, or as a supplement to the prednisone, for PMR? I understand LDN has been around for a long time and is not very expensive.
Low Dose Naltrexone?
Yes. Heard of anyone trying it?
Kathy
A group of us looked into LDN, quite a few years ago. It was developed by a Researcher at Stanford University USA mainly for use in HIV and other auto-immune illnesses. You need to read up on it all.
It is licensed for use in the UK for specific illnesses, PMR is not one of that group.
However, we discovered that there were two chemists (one in Scotland and one in England) who would provide it, providing you had permission from you GP to the effect that you were taking it at your own risk etc (can't remember the exact wording). One lady tried it and said it worked, what I don't know if it was alone or together.
The problem is that it is as cheap as chips and because of that non of the big-pharma's were interested enough to conduct specific trials.
Be careful and be sure and read everything you can find on it, including wikipedia.
Oops meant to add that the two chemists would not supply it without a prescription and a copy of the indeminfication statement - that is was on your own head.
Hope this helps.
Kathy,
I started taking LDN a few days ago. I stopped taking prednisone about three months ago after a very slow taper. At this point, I still have some discomfort which is managable but it would be nice to not have any. I could do without the fatigue and I have some arthritis, so I thought I'd give it a try. I'm starting off with 1.5mgs. I'm in good heath aside from PMR and not on any other medication so I feel comfortable taking it. It's too soon to tell if it's going to be of benefit so I can't be of much help here. time will tell.
Saw it mentioned on here and asked my Consultant about it. He had heard of it and promised to research before we meet again...
Kathy
Were you told, when diagnosed with PMR, what symptoms to look out for in GCA?
Thank you for the info...I will continue to gather information.
Yes, I feel I am aware of the symptoms and on the look out for them
thanks.
Good.
I was diagnosed with PMR in December 2015. I am a 54 year old female. I have tried to reduce pred several times but needed to bump up again to 15 mg due to pain. I'm now on 7.5 mgs and seem ok but am also taking hydrochlorothiazide as well in the hope that I can come off the pred all together. I have been on 7.5 mg of pred and 25 mgs of the hydrochlorothiazide daily since mid May. My pain has been better although I do get hand and foot pain at night occasionally . I'm reducing pred to 5 mgs in August. Hoping it goes well.
Just curious....why the question about my awareness of GCA? From the onset I have carried extra prednisone with me...ready to pop those pills at the first sign of GCA....plus, at one point my rheumy thought I might have some temporal Arteritis (?). Thanks😊
I too have been on 7-1/2m prednisone, and wonder how you know you will go to 5m in August? I have found that the PMR dictates the course of this disease...the prednisone is the management tool. I have been all over the map with the dose...more consistent this past year. I would be very careful dropping the dose too fast...the penalty can be huge. Wish you the best.
I'm hoping to be ok on 5 mg but only time will tell. I have been up and down before but the rhumy is hoping the additional medication will kick in by then. Only time will tell I guess. Thank you.
GCA and Temporal Arteritis are exactly the same things. Temporal Arteritis was used before they realised that Giant cells can be present in other arteries, hence Giant Cell Arteritis.
All patients diagnosed with PMR are supposed to be told the symptoms of GCA, so they are aware of them and need to seek help.
No good 'just popping a few pills' - you need expert treatment and fast. Some people only need to start on 40mg, some on 60mg and others much higher.
Through you,Kathy, I wish all of you will be able to find the correct amount of steroid to make you feel comfortable with!
I have Temporal Artheritis , no pain, no fatigue - lack of balance, yes,
I feel energetic and always in good spirits.
Wish you all the very best.
Cheers,
😊🌺
Sorry, "popping a few pills" was meant as en expression because from the beginning I have travelled a lot...and I winter in the Bahamas...so my plan has been to have enough prednisone with me at all times while I waited for an airlift to the ER! I think my rheumy mentioned that I might have a bit of temporal Arteritis going on because of I seem "prednisone resistant"....?
My thinking was that I started 2-1/2 yrs. ago on 15m for one week, then 10...than yo-young...now 7-1/2.....is the GCA causing the "prednisone resistance"? Very confusing...but the 15m at onset made everything better within the hour! Also I have been having my eyes checked regularly.
thank you!