LDN (Low Dose Naltrexone) for PMR?

[mppk]

Has anyone had experience using LDN for their PMR?

Following my initial PMR diagnosis fall of 2021 I was put on 15mg of prednisone. I couldn't tolerate it, had serious 'rhoid rage' and quickly tapered off. My rheumatologist put me on monthly Actemra infusions. After five infusions it became evident that I was getting no appreciable benefit. Taking nothing for a few months my PMR symptoms (neck and shoulder pain) became so acute that we decided to give prednisone another try. 15mg prednisone was easier to take this time (probably because I had some idea of what to expect). After a month my symptoms were much reduced, although not gone. Tapered to 12.5mg but got pretty sick, extreme fatigue, malaise, depression. Back up to 14mg now for a couple of weeks. The tapering side effects are gone, but my neck and shoulder pain have returned along with prednisone induced insomnia. I'll be seeing my rheumatologist in a couple of weeks and would like to ask about LDN as I've seen a few mentions. Has anyone used LDN along with prednisone?

[PMRpro Ambassador]

If you look at the Related Posts (to the right on a computer, at the bottom (I think) on a phone) you will see previous posts on LDN which will save you waiting for replies.

[PMRpro Ambassador]

If you got no benefit from Actemra there have to be serious questions about whether what you have really is the PMR we discuss here.

PMR isn't the actual disease - it is the name given to a set of symptoms, a syndrome, that can have several potential underlying causes, A few forms of inflammatory arthritis can present with a polymyalgic onset - and unless it is one that is mediated by IL-6, Actemra won't work but another biologic might, And there are causes of PMR symptoms that have nothing to do with rheumatology including cancers but I think you'd know about that by now.

[mppk in reply to PMRpro]

Interesting. I first presented with bouts of extreme, debilitating, fatigue. Like CFS/ME, but only for days at a time, then some recovery, up and down over a year. My GP had no answer and referred me to a rheumy. After her battery of blood tests she also had no diagnosis. I started having aching pains in my neck and shoulders and reported that to the rheumy. A light went on over her head and she said it was PMR. (I did read that folks who are finally diagnosed with PMR presented with fatigue early on.) My PMR symptoms – aching/pain in neck, shoulders, upper back, upper arms that comes on in the wee hours and continues through morning, often easing later in the day – seem pretty classic for PMR. Prednisone does seem to alleviate the symptoms, but it is hard for me handle. Actemra really did nothing appreciable for me. My current concern is that when I dropped from 15mg prednisone to 12.5 I had a strong fatigue reaction. Back up to 14mg reduced that tapering side effect, but the PMR symptoms don't seem well controlled at this dose.

[PMRpro Ambassador in reply to mppk]

What time is the back pain at night?

Pred will work for all sorts of things that involve inflammation. Actemra only works if the IL-6 cytokine is involved - biologics are highly specific - and IL-6 is the cytokine predominantly associated with PMR and GCA.

[ab58sf in reply to PMRpro]

What type cancers may be indicated by PMR like symptoms?

[PMRpro Ambassador in reply to ab58sf]

Can't remember offhand - but it includes blood cancers which is why one of the tests that should be done during diagnosis is a full blood count to look at the white blood cells in detail.

[ab58sf in reply to PMRpro]

Thank you so much. I had all the inflammation marker tests and a Basic Metabolic panel. Hope this covers it. Of course, with the bone popping and creaking I wonder if the prednisone is beginning to impact my bones or if bone cancer could be implicated. This disease really takes a toll on our bodies. I don't have bone pain, however. Very thankful for that.

[PMRpro Ambassador in reply to ab58sf]

In my book that would cover:

ESR and CRP,

Glucose, a type of sugar and your body's main source of energy.

Calcium, one of the body's most important minerals. Calcium is essential for proper functioning of your nerves, muscles, and heart.

Sodium, potassium, carbon dioxide, and chloride. These are electrolytes, electrically charged minerals that help control the amount of fluids and the balance of acids and bases in your body.

BUN (blood urea nitrogen) and creatinine, waste products removed from your blood by your kidneys.

You should also have had what is often called an FBC or CBC - full or complete blood count - which looks at blood cells, red, white and platelets, including haemoglobin and sizes and types of cell.

[nymima01 in reply to ab58sf]

I was diagnosed with PMR along with a diagnosis of Non-Hodgkin’s Lymphoma (a blood cancer). My rheumy at the time thought that perhaps the inflammation from the blood cancer is what caused the PMR. I was in 90 mgs of prednisone to start and it took me 2 yrs to wean down. The PMR was under control finally, but I suspect it’s back again now, after 4 yrs of being PMR free. I see the rheumy this coming Tuesday.

[gtate1914]

I've been taking ldn for 2+ years, along with cbd oil and various other supplements and have tried to eat a low carb diet. I'm presently at 4.25 mg from a high of 80 mg for my gca/pmr. Diagnosed in January 2018. Like so many others, I had a very difficult time tapering and was at a high dosage for over a year until I began my regiment. I like to think that it has helped me since I've had no flares and less pain in tapering. But other's mileage may vary.

[ab58sf]

I have been

[ab58sf]

Have not used LDN, but have been thinking about asking about it. While pred at 5mgs handles by pain, my shoulder and hip bones pop and creak terribly when I roll over in bed, etc. Don't know what is causing that and if it represents damage to connective tissue or bones. Very concerning. Anyone else experiencing this?