How to address PMR pain while decreasing prednisone

Hello @lindapc, welcome to Mayo Clinic Connect. Thank you for sharing your story. My first occurrence of PMR lasted 3 years. I was able to gradually taper my dosage down but the last 6 months I was going between 1 mg and 1/2 mg dosage of prednisone. I did have some pain when lowering the dosages but if it was tolerable I tried to stay on the lower dose. One of the things that helped me was to maintain some sort of mild exercise to keep the stiffness away or at least at a minimum. I too had a lot of weight gain with my first occurrence of PMR - about 50 to 60 pounds. It does require some lifestyle changes to keep from gaining extra weight.

Have you discussed the new sweating symptoms with your doctor? I did not have the sweating with my occurrences of PMR but it is one of the known symptoms.

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Hello John, thank you for your reply and suggestions. I will be going to see my GP soon and will mention as you suggested. What I would also like to know is, how often should you have blood tests to see how the inflammation in your body is?

The Doctor warned me about the Giant Cell association with this condition and although I do not have eye problems or pain in my temple, I have had a very sore scalp since dropping my meds. Does anyone know if this is a symptom?

I also tried treatment with acupuncture and herbal tea which did help but ended up not able to carry on with this due to the costs, this may be something that works with others as well so just thought I would mention this. I try not to drink coffee with sugar but hot water with fresh ginger sliced into it (Ginger root promotes healthy digestion, helps boosts immunity (antioxidants that boosts immunity and helps fight off infections), aids in cardiovascular health and relieves pain (preventing prostaglandins from setting off an inflammatory response in the body.) Cinnamon also can assist with this.

Myself I dislike taking medication and try my best to heal with what nature has provided, although in this case I understand that there is a place for some medication. I also have hypothyroid which makes me quite tired and a fatty liver, so am concerned with taking the Prednisone as I would suspect that this would give your liver a bit of a trouble.

Although I know that exercise is important I find it very difficult to motivate myself at the moment to get out there and get walking. I work at a desk 2 days a week and have very little movement during that time, the rest of the week I have the good intentions but have got to the point where I do not want to go out as I feel so yuk about myself with the bloated face and the extra pounds...I dont want to have this poor me feeling but find it hard to pull myself out of the dark sometimes with this. Is depression part of the condition or a side effect of the Prednisone, I am normally a very positive person with a can do attitude but am floundering with this.

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I have only recently been diagnosed with PMR in December of 2018. I was diagnosed in 2011 at the age of 43 with RA. My bloodwork has always been normal. My initial symptoms in 2011 were intense soreness, stiffness and swelling in my hands, feet and fingers. I was placed on plaquenil and later methotrexate with good results. Of course there are good and bad days but I’m able to push through.
Fast forward to the fall of 2018. I walked like a 99 year old lady. So much shoulder pain, hip and low back pain. And forget trying to get out of the car after 15 minutes or more. So my Doc mentions PMR and prescribes pred. Within 48 hours I felt like a new person! The most frustrating part of all of this for me is the fatigue. But with the prednisone, for the first time in years I felt like myself. Unfortunately as the taper continues that changes also. I get a little stiffer and have a little more soreness with each decrease of Med, and increase in fatigue.
I have a pretty high pain tolerance and lead a fairly active life but I just wish I felt
better. Hopefully it will all come together and we can get all the cats herding in the same direction.

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Hi @lindapc, you ask a good question which I would probably ask your GP when you see them. Mayo Clinic has some information on the Sed rate (erythrocyte sedimentation rate) test here: https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797. My primary care doctor normally schedules the test for me if he suspects my PMR might be coming back or to check to see where my treatment is at (I think).

I have been taking liquid turmeric (orange flavored ☺) to hopefully help reduce inflammation and I think it's helping. It's much better than the way I used to take it - organic turmeric powder mixed in a smoothie which made me not look forward to a breakfast smoothie. I recently started drinking ginger-turmeric tea recommended by another member @lioness which I get from Trader Joe's Market. It's not too bad and fairly inexpensive.

If you ever need some positive pick-me-up feelings, check out the videos on https://www.resilientoption.com/. The VLOG page has some great short videos.

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Hello John, thank you for your reply and suggestions. I will be going to see my GP soon and will mention as you suggested. What I would also like to know is, how often should you have blood tests to see how the inflammation in your body is?

The Doctor warned me about the Giant Cell association with this condition and although I do not have eye problems or pain in my temple, I have had a very sore scalp since dropping my meds. Does anyone know if this is a symptom?

I also tried treatment with acupuncture and herbal tea which did help but ended up not able to carry on with this due to the costs, this may be something that works with others as well so just thought I would mention this. I try not to drink coffee with sugar but hot water with fresh ginger sliced into it (Ginger root promotes healthy digestion, helps boosts immunity (antioxidants that boosts immunity and helps fight off infections), aids in cardiovascular health and relieves pain (preventing prostaglandins from setting off an inflammatory response in the body.) Cinnamon also can assist with this.

Myself I dislike taking medication and try my best to heal with what nature has provided, although in this case I understand that there is a place for some medication. I also have hypothyroid which makes me quite tired and a fatty liver, so am concerned with taking the Prednisone as I would suspect that this would give your liver a bit of a trouble.

Although I know that exercise is important I find it very difficult to motivate myself at the moment to get out there and get walking. I work at a desk 2 days a week and have very little movement during that time, the rest of the week I have the good intentions but have got to the point where I do not want to go out as I feel so yuk about myself with the bloated face and the extra pounds...I dont want to have this poor me feeling but find it hard to pull myself out of the dark sometimes with this. Is depression part of the condition or a side effect of the Prednisone, I am normally a very positive person with a can do attitude but am floundering with this.

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@lindapc - I have had GCA and tapered off the Prednisone in October. I did have some soreness in the scalp before being diagnosed but it was just one spot that was a little swollen and the swelling moved down over a few weeks to the area next to my hairline. I was surprised you said you were so tired from being Hypothyroid. I am on Synthroid and the medication took all of my tiredness away. What medication are you taking? I would say that I was a little depressed on the Prednisone but more from just having the GCA and gaining weight. I have never had PMR. As far as the Sed Rate is concerned, I had a blood test done every 3 months for the GCA.

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I think I have posted before, I take turmeric, ginger and other spices in my almond "milk" drink, with a little organic stevia to cut any bitter taste. I had one blood test to determine PMR and then another about 4 weeks later to see SED rate. My next one will not be until June, when I have my usual 4 months check up..

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Hi @lindapc, you ask a good question which I would probably ask your GP when you see them. Mayo Clinic has some information on the Sed rate (erythrocyte sedimentation rate) test here: https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797. My primary care doctor normally schedules the test for me if he suspects my PMR might be coming back or to check to see where my treatment is at (I think).

I have been taking liquid turmeric (orange flavored ☺) to hopefully help reduce inflammation and I think it's helping. It's much better than the way I used to take it - organic turmeric powder mixed in a smoothie which made me not look forward to a breakfast smoothie. I recently started drinking ginger-turmeric tea recommended by another member @lioness which I get from Trader Joe's Market. It's not too bad and fairly inexpensive.

If you ever need some positive pick-me-up feelings, check out the videos on https://www.resilientoption.com/. The VLOG page has some great short videos.

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@johnbishop - Hi John, thank you for the information and links you have given me it was very helpful. I will see if I can purchase the tea you have mentioned here in New Zealand and give it a try. Big thanks once again, it really does help talking to people who are experiencing the same thing. 🙂

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