Hi Everyone,
I have had to go backwards from 2 years of tapering. I am now at 12 1/4 mg Prednisone today. At times during the day, when I can feel the inflammation inhabiting my body with extreme physical fatigue, extreme tingling extremities and inability to walk as usual. My legs move very slowly and my feet turn in and I am unstable. I am not sure if this is a symptom of low adrenal level from tapering? I would appreciate any clarification and support.
If you are currently taking 12,5mg then it is extremely unlikely your symptoms are due to poor adrenal function - that is a high dose for replacement therapy, 7-8mg is usually plenty.
What youa re describing sounds much more neurological in nature - you need to discuss a referral to a neurologist if the rheumy can't help.
I am feeling like I am walking with a grand piano on my back. The fatigue is unbearable. But I have no pain at 12.25 mg. Prednisone.
You might need to concentrate more on pacing as in this link from PMRpro-
Hi,
see 10 months ago you had to go up to 20mg - so has it taken from then to taper to get to 12.25 - or have you been on lower doses?
If you have tapered from 20mg and are now at 12.25mg your adrenals are unlikely to be to blame as you are above the level when they need to work…the Pred is above the physiological level of cortisol your body would normally produce.
Hi Dorset Lady,
Yes, It has taken me all this time to taper from going back to 20mg to 12 1/4 mg. I can feel the inflammation in my body when I cannot walk right. When it leaves my body, my walking improves but I still cannot walk more than 10 ft. without getting really tired. I have to sit down. The second time around my symptoms were so much more severe that when I was originally diagnosed. The pain was localized in my shoulders and arms. I could walk and hike just fine.
That’s not good then.
If you got through first episode a lot quicker and easier, I wonder if it actually ever went away -so this time that’s why it’s more severe.
This time it might need more management with a softer approach from you with more self TLC..
I am tapering dead slow from 20mg. I feel like my legs are weighted and slow and I am terribly fatigued. Are you saying this is not from the PMR or Prednisone?
Impossible to say - but there are a few people on the forum who complain about heavy, concrete legs.
What other meds are you on?Gabapentin interacted with me causing instability and muscle weakness.Its taken me a long time to get stronger but it is happening thank goodness.I Have vision issues too compliments of prednisolone..Rest as much as you are able.Try to do nice things for yourself.You are worth it.
As Pro and the others have said at the dose that you are on your symptoms are unlikely to be caused by adrenal issues.Some people , especially people with other chronic pain disorders ( Fibromyalgia , Chronic Regional Pain Syndrome, ME or CFS to name a few) or central nervous system sensitivity, can suffer withdrawal symptoms as they reduce the dose more than the "norm" , even if that reduction was as little as 0.5mg.
This is why people that notice severe side effects with a taper of steroids in these multiple illness groups often benefit the most from a very slow tapering approach allowing good time for the bodies to regain strength between reductions from self care techniques, including diet and hydration before each new taper.
They often also need to work with their GP to increase doses of their medications for neurological pain during the steroid taper . Sometimes, long term , sometimes, like with 'sick day rules' for steroids those other drugs are increased for a few days before , during, and after the taper of steroids to reduce the neurological pain side effects. The decision depends on what works for the individual.
One thing that you might want to consider based on your report of the symptoms you are having is to request blood tests from your GP for vitamin and mineral deficiencies.
If you have been on steroids , and many other medications, long term they can have an effect on your nutrient levels even if you have a good diet and take regular oral supplements . This is because of the effect that medications can have on how well we absorb nutrients during digestion.
This can be more of a possibility if you also use a PPI.
Vitamin and mineral levels that are deficient , borderline, or very low but in the normal range, can cause many different symptoms and slow down our recovery and taper success. This is especially true of Vitamin B 12, Folates, Iron/ Ferritin, and Vitamin D , and can happen if you have an imbalance of Sodium and Potassium too.
Very low levels of these nutrients are usually tested for as a way of excluding other possibilities in the diagnosis of MS , because they are known to cause similar symptoms.
Symptoms include neurological and mobility issues like, change in muscle size , turning in of limbs , parathesia and numbness in the muscles with activity, muscle and joint pain, pins and needles in the extremities, poor balance and coordination, Fatigue , increased pain and minor tremors.
Requesting blood tests for Vitamin B12, Folates, Ferritin/ Iron , full blood count , Kidney Function / Electrolytes, and Vitamin D give you a baseline to work from , especially if you haven't had these tests in the last 3-6 months and are experiencing deficiency symptoms.
If you take vitamin or mineral supplements already you need to stop them 72 hours to a week before the tests so that the dose in your blood stream doesn't effect the accuracy of your results.
If you have a deficiency of something your GP can either prescribe the right dose of oral supplements, or in some cases like Vitamin B 12 a course of injections to reverse the Deficiency and solve these symptoms.
If your results are at a very low level of the normal range it is often sensible to begin to increase the amount of foods containing those nutrients and take a daily supplement for them to improve your level and see if your symptoms improve. Then have yourself retested after 3-6 months again to check your progress.
Making sure that you drink the recommended amount of water each day seems like a small thing but it is also vital , especially when dealing with illnesses that involve inflammation or when taking medications and tapering,
You can be suffering from serious symptoms because the body is dehydrated even if you don't feel thirsty. This also causes imbalance in salts and kidney function which can cause both MS and Parkinsonism- like short term symptoms. It can happen in both hot and cold weather.
You may also benefit from requesting other tests from the GP to rule out other things too such as; Diabetes , ANA and cholesterol if you haven't had them .
You will also benefit from your GP doing an examination to assess you for neurological pain issues like Fibromyalgia and Regional Pain Syndrome that can be tested at a surgery level before referral to Rheumatology.
Having yourself examined or getting tests and x-rays to rule out the possible beginning of Oestoarthritis, oestoporosis or other bone and joint issues is also important .
A referral to the Rheumatology Physiotherapy department is also useful . They can assess if a change in your posture or gait ( way of walking) because of the way we can protect ourselves from pain , or from periods of time with less activity , has changed the way your body moves. These can cause tightening in tendons and ligaments that at its most severe can start to cause turning in of limbs , feet and hands, They can slowly help you with gentle stretching exercises and movement guidance to help solve these problems that can cause their own pain issues too.
If your vitamin or mineral levels are alright , and other tests are negative it is time to request a referral to the Pain Clinic and a referral to Neurology for more specialist diagnosis. Hope things go more smoothly for you soon.
Take care , Bee
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