LDN FOR PMR

[jwb43]

Has anyone had success using Low dose Naltrexon for their PMR?

[Meg1711b]

I used LDN for 3 months or so this summer, and found it to be helpful. I had a bad flare In April after reducing too quickly. I had been doing very well before that. This PMR journey is so long and drawn out, I was 2+ years into the disease, and the flair really pushed me to a bad spot. Discomfort and terrible fatigue again, and starting toward depression at being in such bad shape after working so hard to get better. My regular doctor suggested Cymbalta, but I have friends who have had terrible withdrawal trying to get off of it, and getting off Prednisone is all I can handle. My rheumy suggested the LDN. It greatly helped with mood, and also with discomfort. It is a subtle drug, but I definitely found it to be helpful. Went off it once, because I wasn't sure it was helping and didn't notice much difference, but decided to try it again a couple weeks later, and did notice the improvement again.

I really hate being on medicine of all kinds. Once I got myself back on track and stable (after a few months) I did stop it. But I still have some, and wouldn't hesitate to use it again. I took 4.5 mg tablets, which have to be compounded at a special pharmacy.

Only side effect I was aware of, were more vivid dreams for several days when first taking it

I think its definitely worth a try. And it was very inexpensive, about $18 for a month.

Good luck.

[jwb43 in reply to Meg1711b]

So you were taking it in addition to prednisone? I was hoping to take it instead of prednisone

[PMRpro Ambassador in reply to jwb43]

There are no studies showing it, or anything else, will work instead of pred.

[Meg1711b in reply to jwb43]

Yes I was taking it in addition to prednisone. Sorry to disappoint you. My personal experience with PMR has been the faster you accept it is in control, and that you will be on prednisone for a long time, the easier it will be to function- although at greatly reduced daily abilities. Be kind to yourself, lower the bar of your expectations, pace yourself especially when feeling well, and don't fight it-learn to dance with it-as it will likely be your partner for a couple of years. Hug.

[nancyannehanson in reply to Meg1711b]

Thank you, hardest part for me has been accepting.

[HeronNS in reply to nancyannehanson]

I was in pain for so long before diagnosis and treatment I never had any trouble accepting pred! What I did have a problem with was being (mistakenly as it turned out) diagnosed with osteoporosis. By the time it was admitted it was "only" osteopenia or low bone mass I was well on the way to healing myself without drugs, so in a way the bones took my attention away from PMR. It seems everything I've done to help bones has also helped PMR.

[PMRpro Ambassador in reply to nancyannehanson]

It probably is for most people.

But it is perfectly possible to have PMR, be on pred AND have a pretty well normal life. I do and have done for the last 4 years - not that PMR itself stopped me much before. It was the "add-ons" that got in the way!

I used to still ski even with PMR until other things made me decide to give up, we travel all over the place and enjoy what we do. I maybe have to take the lower energy option sometimes but that isn't the end of the world.

It helps to concentrate on what you CAN do rather than what you can't manage. There are always alternatives.

[nancyannehanson in reply to PMRpro]

Uplifting thanks for the reminder.

[jwb43 in reply to PMRpro]

My PMR does not sound like everyone else is PMR I cannot sit for very long so I cannot go on trips or drive anywhere or go on a plane. I cannot walk for more than a few feet without it creating more pain. It's already been almost 4 years and it's not getting any better. It seems to be spreading throughout my entire body. My doctor says it's fibromyalgia another one says it's PMR another one says hypersensitivity syndrome. I'm just sick of not being able to do anything anymore. I have no fatigue I have no other symptoms but muscle pain. So my body screams to go and do that my pain says no.

[HeronNS in reply to jwb43]

jwb43, I looked back at your recent posts - have you started to take prednisone yet? Not many of us would have been pain free doing the things you mention as being impossible for you at the moment. Pred made all the difference. Unless you have the week's trial at a moderate dose of pred (15 to 20 mg) you won't know if it will help you. Is there a reason your doctor hasn't given you the trial yet?

[jwb43 in reply to HeronNS]

It's because all my doctors disagree on my condition and what the treatment should be. I have enough prednisone that's been prescribed in the past to go ahead and self medicate. But last time I did 3 weeks of one milligram of prednisone it took me three weeks to recover and get my adrenals working again. It was really miserable and I also had quite a few side effects just on one milligram. I was irritable which is difficult because I have to work my muscles got weak and shaky I had insomnia and felt like I had the flu the whole time. So I'm a little bit scared of the prednisone

[PMRpro Ambassador in reply to jwb43]

Physiologically speaking, 1mg of pred won't make your adrenal glands stop working. If you react so badly to medication then it sounds as if you may well have fibromyalgia as that tends to make people have strange reactions to drugs for some reason.

However - if it IS PMR, then without pred, most of us would be in the same state as you. It is only taking the right dose of pred to manage the symptoms that allows us a life.

[HeronNS in reply to jwb43]

Oh I see, I didn't know you had taken pred before with bad reaction. So sorry! Hope they can get you sorted soon.

[jwb43 in reply to HeronNS]

Just wondering since my doctors can't seem to agree is it bad to start with a low dose of prednisone and work up to find the optimum amount as opposed to working down to the optimum amount?

The prednisones I took before was methyl prednisone dose pack. Maybe regular prednisones which I have the kind that you take before bed and it kicks in at four in the morning would not be as difficult for me to take.

Is it bad on your body to start and stop prednisones. For instance if I tried a week starting with 15 and then went down a little bit each day like the dose packs would that be bad ?

[PMRpro Ambassador in reply to jwb43]

The dose packs are totally the wrong way to go about PMR - it is a chronic illness and needs long term pred. I was on Medrol - it was awful from day 1 and I put on a lot of weight but had severe muscle wasting, my hair and skin went wild and I grew a lovely black beard. It also didn't work well, even at 20mg it took until after lunch to be able to move at all.

In PMR it works best to clear out all the existing inflammation and get to a stable state before you start to reduce and with each reduction you need to be sure it is still enough to manage each day's new inflammation. So starting at a dose that is probably a bit too much and going down is far better than working your way up - there is still a big pool of inflammation which stops you seeing if you have got to the right dose.

[PMRpro Ambassador in reply to PMRpro]

And PS - I have been fine on both prednisolone and prednisone - also corticosteroids but different structures. I will never accept medrol again.

[HeronNS in reply to jwb43]

What PMRpro said. My experience is pretty classic. Some people start at a slightly higher dose and rarely people are fine starting with a lower dose. I started pred in June 2015. My doctor put me on 15 mg per day for a week (taken first thing in the morning with breakfast). This is the standard trial. I responded very well, slight relief of symptoms within hours, completely pain free within three days (including non-PMR discomfort from osteoarthritis). Because of the excellent response I was told to stay at 15 mg for a further four weeks then start reducing by 1 mg per week.

There are different ways of handling this early reduction and in fact I've never heard anyone else say they were told to reduce this way, usually it seems they are told to reduce by 2.5 at first and perhaps every two weeks. I was fine until getting to 9 mg where I experienced some gradual return of symptoms. After about ten days I went on line, found the Patient forum (and later this one) and learned about the dead slow nearly stop tapering plan. After a few more weeks back at 10 mg I started, with my doctor's approval, the slow reduction and have successfully used this to the point where I'm now at 2.5 mg.

Some of the other pains I'd had have returned, but I have only an occasional minor niggle of PMR, no disability or limitation of range of motion, etc.

[jwb43 in reply to HeronNS]

HeronNS,

Now that you are down to 2.5 milligrams how is the side effects? And are you able to do physical activities such as long walks or riding a bike?

[HeronNS in reply to jwb43]

My side effects were mostly invisible - high ocular pressure, high blood sugar, possibly bone thinning. All of these were gone by 5 mg, perhaps sooner, but I was and remain very careful with my diet, and did have a couple of extra eye examinations last year to make sure pressure did not develop into glaucoma. I have walked and exercised all the way through PMR journey. I had lost weight before diagnosis and did not regain any, possibly because of diet and exercise. Did have some red blotches on my arms for awhile, those too have gone. Because of diet and exercise I've even managed to improve my bone density reading (without any bone drugs).

[jwb43 in reply to HeronNS]

This is where some of my confusion comes in. I have no joint pain only muscle pain. And it's worse if I try to walk or do any form of exercise or using my muscles to any degree. A lot of people I've read about seem like they're still able to do exercise even though they have PMR

[PMRpro Ambassador in reply to jwb43]

I did - I skied even with PMR and not on pred. But it was very uncomfortable. We have said before - most of us who are able to exercise are taking an appropriate dose of pred. Without pred we would be far more restricted in what we could manage and it helps with the majority of the pain, which is muscle pain, not joint pain. But your muscles remain intolerant of acute exercise and you have to build up the amount you do very slowly.

[HeronNS in reply to jwb43]

One of the things which drove me to a meltdown and getting a new doctor at the place where I was no longer considered a patient, my doctor having retired and his useless replacement having moved away, was my growing inability to perform simple exercises. I seemed able to shovel snow, but I distinctly remember several times it taking at least half an hour to get up from the floor where I still attempted to carry on with long-standing physio for my back. I was finding it increasingly difficult to get into or out of the bathtub. I thought I would have to give up driving because I couldn't turn my body enough to look out the back window or safely shoulder check. And I would never have described the pain I felt as being in my joints, I certainly perceived it in my muscles. I remember telling my husband when heading out for a walk that I was going to "hobble" around the block.