Anyone tried LDN for PMR?

I live in Rhode Island, Northeast U.S.   I'm not confident that my doc will go for this.   One of the things I've read that's a drawback with LDN is that a lot of doctors aren't familiar with it because the pharma reps aren't pushing it.   It's considered "off pharmacy" if thats the correct term.   it comes in 50mg dosages, so you have to find a pharmacy to reduce it to that mimimnal dose from the 50.   So a little less main stream but it can be done.   I very surprised that you aren't having any relief from such a high dosage of prednisone.    I was started on 15mgs and went from debilitating pain to no pain in three days.    50mgs seems high to not be finding any relief.   no wonder you're exhausted.    I really hope it gets better for you soon.  

If I remember correctly you are newly diagnosed yes? If 50mg hasn't reduced your pain significantly in a week then you need to revisit that diagnosis.

If you are still in the first week, it's no surprise you feel dreadful!

I hate to say this, but PMR is not going to go away by taking a few pills. It's a real roller coaster..... you will come to terms with it, but don't beat yourself up if you feel sorry for yourself - ok?

We are here when you need us.

Having PMR alone is bad enough.  I've had plenty of times where I didn't think I"d make it through the day.  I can't imagine what it's like having other medical issues compounding it.  My heart goes out to you.  I hope things get better very soon.  Best wishes.  

Also the other nice thing that helps that you can find in the garden are Barberries (Berberis) dried berries are wonderfull in pilafs and any middle easten cooking. I eat them as they are and often put them in muffins or cakes. The bark is also good for anti inflamatory use just dry it and pulverise. Very bitter but effective. The bark from the roots is best..its very yellow and some call it Tree Turmeric.

I've never heard of Whitethorn.  I'll look into it.  I do have a big bunch of sage somewhere that I forgot about.  I've moved and can't find it but that's a good idea.   Just a note on the LDN.  I did see where it has helped some people with MS.    Thanks for the tips.

Looked up whitethorn andit is another name for hawthorn or mayblossom, etc.  Crataegus monogyna.

I'll see if I can find it.  thank you.

Thats what I said above !

 

That study is one that I did come across.  I think 2 out of 3 odds is worth trying.  Have you considered it?

Yes I  considered it. No I decided not to try it.

We had a tremendous discussion about it with people in the USA, people with AIDS, drug addiction et al. My MP wrote to the Secretary of State for Health at the time for clarification as to why it was used for specific purposes only.  The reply was that a person could ask their GP for use for a non-specific illness, but they would have to sign that it was their decision and if anything untoward occurred, neither the GP or Pharmacists were in any way responsible.

It is licensed for use in the UK for specific purposes only.

What finally made me make that decision was I had previously decided to stick with pred, no steroid sparing agents, no ' just in case stuff.'

I reckoned my body had enough to deal with, GCA and Pred (and the possible 82 side effects and has it had been around a long long time all the side effects were well known) Pred is and still is currently the only drug that stopped me from losing partial or total vision permanently.

If anything else came along, ie kidney infection, pseudo gout etc, we would deal with them as it would have been dealt with taking into account I was on long term pred.

That course of action was and is a very personal decision. My medics were not happy, but eventually they respected my decision, when I pointed out, politely, it is my life, my body and after listening and taking in all they had to say - ultimately it is my choice.

I had GCA for 5 years and have been in remission now in 6th year.

Research is currently being undertaken on new drugs to see if they will work.  The result to date is ' steroid ' sparing yes, replacing steroids, not yet.  It will come one day - but it takes time.

Thank you for your reply.  I wouldn't mess with GCA either.  I didn't have that problem thank goodness.  It must be terrifying.   I'm not currently taking steroids or any other medication, so I thought it might be a good time to try LDN and see if it works for me.    It's been cold and rainy for weeks here in New England, a very cold spring.  Once it gets sunny and warm, I hope to feel a bit better and not need or want to take anything.  Here's hoping.  Thanks for the info. 

PMR if left untreated can and does morph into PMR - don't take a chance.

No, I won't take chances.  I took prednisone for four years, just weaned off a couple of months ago.  I'm doing ok, but not completely without stiffness or some aches.  It's manageable.  Thanks.