Hi I was diagnosed in April 18 and put on 15mg of Pred which took effect within and hour I have been slowly tapering without problem except for mild stiffness now and again and have been living a normal life going to the gym walking loads the only side effect from the Pred was insomnia. I have been on 1mg since beginning of December but since Xmas I have been sleeping 10 to 12 hours a night which is unheard of for me and am still tired with no energy. I saw a doctor 2 weeks ago as I also had tingling hands and feet she took blood and said I had low sodium and gave me Thiamine and strong Vitamin B compound tablets and told me not to drink alcohol for a month.i only drink on Friday and Saturday nights usually. She took more blood test including cortisol levels which came back normal except for rheumatoid which was ‘as expected.’I didn’t actually see her for the results it was just the receptionist in the phone. My forearms really ache and when peeling potatoes the other day I had to stop half way through each one and even getting dressed or folding a towel makes my arms ache. I have taken 5mg this morning and will do for a few days to see if this helps I’m due to see doctor on 12th Feb. Any advice would be greatly appreciated
Thank you
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JanetT58
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Hi Janet so sorry you’re not doing well. PMR is such a tricky disease because not everyone reacts the same way to doses of Prednisone. Glad you are seeing your doctor soon. I have been dealing with PMR for three years. I’m 74 and find any activity that involves the arms makes them weak. It seems to be repetitive movements that bother me. Chopping lots of veggies or folding lots of clothes. Take it easy and rest when your body tells you to. I have started a Mindfulness app called Calm that has really helped me relax and slow down. Might be worth a try.
To have got as low as you have in such a short time is good in one way, but you’ve gone below the level of Pred you actually require, and a slower taper will do 2 things - make sure you don’t overshoot your dose required, and help your adrenals to get going again.
I am having trouble with my adrenals and am totally exhausted all the time, I also find my forearms arms ache doing things like peeling potatoes or even reading a large book and holding it up. Really annoying.
I wonder if that’s adrenals or PMR. I like to read in bed and had the same experience with my arms before I ever went on prednisone . My arms got tired but I don’t remember them hurting the next day. Now, while on pred I notice after doing something new with my arms/hands they are sore the next day or two... like cutting up lots of hard vegetables, addressing Christmas cards, things I don’t necessarily do often.
I don’t think it is the adrenals. I am not sure if it is the PMR or not. I find swimming painful and as you say trying to read in bed. They are not sore, they just have this gnawing pain.
Now my first thought is that this is a typical case of 2mg was enough to manage the inflammation and be your adrenal function replacement and 1mg wasn't.
Poor adrenal function will lead to low sodium. And the cortisol test may not be accurate when there is pred present - not entirely sure of details though,
Ok thanks i didn’t take the Prednisolone on the morning of the cortisol test . Doctor didn’t seem to connect PMR with low sodium but I have had it before so perhaps it is.
Do you also have RA ? You mentioned the RF was as expected , so if you have RA this can also cause you increased Pain and Fatigue as well as ActivePMR.
If your Sodium and B Vitamins are low these can also increase Pain and Fatigue with tiredness and aching in the joints .
Did you get the print out of results from your blood tests from the Receptionist ?
It would be a good idea to request one as how low your results were at that baseline test is important to keep track of and can make a difference to how long it takes for your Business supplements to work on your symptoms.
Did they also give you electrolyte / sodium supplements or drinks to take , or suggest you increase your sodium intake for a month ?
It may be a good idea to make an appointment with your GP to discuss your results as soon as possible rather than waiting and ask about this , as well as discussing your current increase in Pred.
Do you have other Pain Medication you take regularly for other Health reasons , or did you try taking standard Paracetamol doses to see if they helped reduce the Pain?
You may find that these could help , sometimes an increase or use of other Pain Medication is helpful at first , especially if part of your current Pain issues could be Vitamin/ Mineral Deficiency .
Did they also check your Iron , Potassium and Magnesium and Thyroid blood factor levels too ?
These could also be playing a factor with these symptoms.
Are you also still taking your Vitamin D supplement ,
Your Adrenal system may still be recovering fully and in combination with cold weather and the Nutrient levels it could be causing these symptoms too.
You could have a few days in 5 mg , see how it goes but then reduce down again to see if you have a increase in pain before your GP appointment . This could help them work out if your symptoms are being caused by PMR , some form of Arthritis or other causes.
It could be a return of PMR but it is hard to tell though as it could be other things from your test results so far which might not need a Steroid increase to resolve it.
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