PMRGCAuk
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Prednisone levels

Been on prednisone 17 yr for 4 different problems.

Dr insists on reduction from 20 to 15 mg. I have tried this in past but pain puts me in chair or bed - overall reduction forever in strength even after go back to 20.

Down to 15 again and hurt all over, fatigue, for first time loss of appitite. Diabetic sore on foot so should eat high protein, low sugar diet but all of a sudden only eating fruit and ensure.

No bone loss

Actually bones high density and increasing.

Can my diabetic sore heal if on 20 mg prednisone.

Can diabetic patients manage long term on 20 mg prednisone.

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It may be that you are making too large a reduction all at once. Perhaps going to 19mg first for example may work better.

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I started to reply typing on phone but lost the post and decided to wait until I was on my computer.

I have autoimmune problems and need at least 10 mg to keep my immune system kept down because of damage to my liver, kidneys and joints. I have damage to most of my joints. Both knees have been replaced. My shoulders have gone past the point were the doctor feels that shoulder replacement will work. I have no cartilage in either shoulder. There are bone spurs and fragments. A 3 cm wide tear in the rotator cuff on the left. Other damage to shoulder that the doctor was just going to pin bones, clean up bone spurs and fragments and hope for the best.

Doctors hate me because I do whatever I need to do to keep on my feet and do what I want. For the last 15 yr I have gradually increased my prednisone from 10 to 15 mg and recently 20 mg as a base. I have gone up to 40 mg when I did 3-4 wk strenuous trips (whitewater kayaking and rafting-rowed 16' raft through Lava Falls 4 days after putting 3 tears in my rotator cuff - 40 mg). I have had little improvement over 35 mg.

Doctors hate me because I do whatever I need to do to keep on my feet so I can do what I want.

Most Doctors keep insisting on my trying to reduce too fast. The worst mistake was when 'pain' doctors insisted on my trying to reduce from 20 mg to 10 in 2 weeks. I reduced to 12 mg in 6-8 weeks. That was too fast. I lost too much strength that even though I went back up to 20 mg I never recovered. Finally my endocrinologist recommended 1 mg / month. That worked 2 yr. ago but then 1 yr ago I went back up to 20. I am back down to 16 mg now. I would rather go back up to 20 but am not sure how it will impact my diabetic foot sore.

I was trying to schedule surgery for shoulder joint last May when I got the diabetic foot sore. The doctor will not operate until the foot is completely healed. It has been 7 months and the ft is still not healed. I am supposed to support my weight with my arms using a walker to keep the weight on my ft down to 40 lb.. In June I tripped and fell and broke my left femur. The physical therapists did not know how to work with someone with 2 bad shoulders although I was doing OK until I broke my femur.

My shoulders, trying to keep wt off both legs, hurt. The muscles, etc are very badly swollen. The muscles are weak. I know from past experience that if I increase the prednisone that it will reduce the swelling and probably make me feel stronger - that is what has happened numerous times in the past. At 16 mg the pain of using my arms to keep wt. off my legs make me limit my activities to 4 hr per day. you can hear my joints moving in and out from 3' away.

How does prednisone change your diabetes and your ability to heal diabetic sores?

I was able to reduce my prednisone 1 mg / month 2 years ago but it is harder now. Does that change with time?

Going down below 15 mg seems impossible - pain too great - do not think that I even want try. I have been at 15 mg or higher for at least 12 yr. Has anyone else cut their prednisone after that many years?

My bone density is very high and has actually improved although I am not sure that will continue since I have not had much exercise the last 7 months. I heal very slowly.

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Do you still need prednisone for your other problems? If you are tapering a dose taken for polymyalgia I suggest that a drop from 20 to 15 in one step is far too large, and no wonder you are suffering. It is a reduction of 30% whereas the guidelines say that 10% is more likely to be successful. The other thing is you may find it difficult to drop even 2 mg overnight, but may find a slower taper program kinder to your body and helpful in achieving lower doses. Have you read this?

healthunlocked.com/pmrgcauk...

Ideally to help with other issues like diabetes it would be good to get your dose as low as possible, but you can't rush the process. Better to take ten months or a year to get successfully to 10 mg than try to go faster and end up back at 20 again.

Good luck!

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Thank you for your reply. I have determined that the fastest reduction I will ever do in the future is 1 mg / month. Maybe even 0.5 mg / month. Trying to reduce too fast 3 yr ago had disastrous consequences that I will never recover from. Another doctor cautioned me 10 yr ago to be careful about reducing too fast. The doctors 3 yr ago would not listen to me and would not talk to the specialists I had been going to. They did not seem to understand that they could not reduce prednisone as fast as pain medicine. The doctors were not concerned with my use of pain meds because my use was very low even after 14 yr. so they focused on my prednisone use instead. The end result of their attempt to lower my prednisone too fast was a permanent increase (about 4X) in pain meds. Since then I have been in constant pain.

Because of other autoimmune problems I cannot go below 10 mg. I think that 15 mg is as low as I can get and still manage to move.

If the only reason to reduce prednisone is my diabetes - how significant is the impact?

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This is the third time I've tried to write this post, I keep inadvertently closing the window. So this time I'm posting all the links I want to send first, closing those windows, then writing my post to you. You can refer to the links as appropriate!

bioflexlaser.com/clinics/in...

ncbi.nlm.nih.gov/pubmed/273...

chewvalleylaserclinic.co.uk...

Norman Doidge, MD, The Brain's Way of Healing

I believe that pred changes the way we metabolise carbohydrates causing more sugar to be released into the bloodstream. I'm sure the experts can describe this more accurately and clearly. Not being diabetic myself I was able to control my rather alarming spike in blood sugar at start of pred journey by virtually eliminating carbohydrates from grains, especially wheat, and sugar. And on the advice of my daughter, a dietitian, I now eat some protein at every meal and whenever I consume carbs.

If you have access to a clinic providing the service you may find low level light therapy helpful for treating diabetic wounds. I have used it to help me taper my pred dosage although it hasn't been studied for PMR. Studies have shown, however, that it lowers cytokine production in RA patients. The clinics for Bioflex are, however, rather thin on the ground except in Canada and parts of the US. I name one above which happens to actually mention treating PMR. If you want more information about Bioflex laser, I first learned about it from the book named above by Norman Doidge. There is a chapter devoted to the development of this therapy. As Bioflex LLLT is usually provided by physiotherapists and chiropractors insurance coverage is often available.

All the best.

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Hi,

It's not clear from your post why you have been on prednisolone for 17 yrs and if you have been taking it continuously for all that time.

Do you have PMR or another auto immune disease?

It's hard to comment as you have given very little information and the majority of the people on here have PMR/GCA and can only speak from their experiences of these conditions.

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See my 2 previous replies. I have auto immune problems and am allergic to most drugs used to treat this problem.

This is the best forum I have found talking about prednisone reductions and rates of reduction.

3 yr ago I had disastrous results when I let doctors persuade me to reduce too fast.

Prednisone info seems to be similar between the illnesses.

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Hello,

Are you seeing a diabetic foot specialist (not necessarily and doc) for the sore and is your diabetes well controlled or being monitored? Nobody on a forum can say how your sore will heal or not unfortunately.

After being on Pred for so long, it sounds to me that such big drops are likely to end with trouble and by that I mean PMR trouble if that is what you have?

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I am seeing an endocrinologist for my diabetes, prednisone and bone density but I am not getting enough info.

I have auto immune problems with my liver, kidneys and joints which is different but problems with prednisone use is the same for both illnesses or at least the impact on muscles and joints.

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The sore will only heal if blood glucose drops. I have been dx with type 2 diabetes for 18years. I have been on pred for 18months between 8 and 15mg. My hba1c was 114 at 15mg and i was put on insulin for first time last February (at my own instigation). I found that the tiniest wound took weeks if not months to heal until I went on insulin. Hba1c down to 54 last time. At present wounds heal within acceptable time...a couple of weeks for minor and 3-4 for deeper wounds. I always keep wounds dressed which helps them heal instead of forming big scabs that get dry and open up again..

I agree you should be seeing diabetic nurse to help you with management and regarding wound.

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I have been trying to get on insulin to try to control my diabetes for over a year!

Do I have to have a temper tantrum to get insulin? Do doctors know how to think or is everything to a set procedure. How did you get insulin?

After over 2 years my a1c is still too high. It has gone down but still not down to the normal range. The Dr. just tells me that there has been an improvement in the last 6 months. If I try real hard maybe I can get it down to normal in another 6 months. What will happen to the rest of my body and eyes in another 6 months.

There are new types of insulin and small injection pens that would control my diabetes but all my doctor wants to give me is oral meds and then talks about keeping to a strict diet and changing my life so I am on a rigid schedule - taking my meds at the same time, eating the same time and keeping to a rigid sleep schedule. I have never lived on a set schedule for anything except for work and I am retired. I cannot force myself to eat what they want me to eat - I am not a rabbit. I buy lettuce and then do not eat - have lost 60 lb.

How did you manage to get insulin?

One thing that I did learn from my wound specialist is to increase my protein consumption to 90 g per day. I had no idea of how much protein that is. It is hard to eat that much protein. I think that most people only eat 30 g / day. At least that was all I was getting at the rehab facilities I went to when I got out of the hospital after my diabetic ft injury infection and broken femur. Increasing my protein had a significant impact on my healing.

Instead of giving me insulin to help I am getting all sorts of expensive treatments to help me heal. I go into a special Wound Care unit were my wound is scraped by the doctor to remove scabs and re-bandage my foot. Due to a broken 5th metatarsal bone that has been re-breaking for 10 years it is difficult to keep weight off the sore. Bandaging is difficult.

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I was fighting for about 9 months which felt an age but compared to what you have been through.....

Every time I went to gp I said can't I go on insulin while I am on pred.... The rheumy recommended it and that I go to diabetes clinic. I still had 2 more appts at GP with them saying keep trying on current regime. As you probably know extremities hurt terribly and wounds took months to heal. I finally saw new GP at practice and my hba1c was 114. My meter was showing 30+ and was often too high to even provide a reading. New gp referred me to diabetes clinic...they rang in 2 days on Friday and said to go to hospital if higher that 25 over weekend and they would try and get appt asap . It was higher but I didn't go to hospital. I basically walked into diabetes clinuc on the Monday and nicely explained and the nurse checked glucose and ketones. Insulin that day. Much better control.. reduced neuropathy and wounds actually heal. Hba1c 54 last time.. after 7months.

I think you have every right to ask to be referred to diabetes clinic. I am sure there will be people who can advise 're contacting practice manager regarding your care. I wish you luck. I was 17plus years basically on my own. Seeing nurses at clinic this year has been great. They are very supportive at my local clinic which is held at sports centre. Good luck 🌻

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It could be that they are worried about hypo. I was put on byetta injections daily before insulin. Perhaps research that and suggest.

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You have told us nothing about yourself - why are you on pred? Is it currently for PMR/GCA? Or for something else?

If you have PMR you shouldn't have to manage longterm on 20mg of pred - the most likely cause for your problems is trying to reduce the dose by 25% overnight. Anyone would feel bad. In tapering pred dose it is advised that no reduction step should be more than 10% of the current dose - for you at 20mg that is 2mg, not 5, and for many people even more than 1mg is hard. And that doesn't matter a lot why you are on pred, it still applies, it particularly still applies if you have been on pred for such a long time, whether continuously or in repeated courses. Your body gets used to it being there.

But if you are diabetic and require long term pred at any dose - you should be under the care of a specialist. That is even more important if you have skin breakdown that isn't healing well.

Since you say prednisone I'm assuming you are in the USA? Do you have a specialist caring for you?

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Gosh.....I have just been told that I am now diabetic thanks to the pred. Like you can't seem to get below 15 daily and the two broken femurs thanks to the Alendronic Acis are still not healed. Ad to that replacement heart valve surgery in the new year and 2017 has not been as expected. Thanks to you I will ask my GP about pred. and diabetes. My best wishes.

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Have you cut carbs drastically Ida-June? One lady reduced her Hba1c from 6.5 (pre-diabetic) to 6.1 (acceptable) just by doing that.

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I have worried also.

See my other comments and increase your protein intake. It seems that I keep finding out something new on the internet or from another doctor but none of my doctors bring everything you need to know together. You need to explore for yourself and then try to convince your doctor. Per 1 article I read the oral med I am taking makes it hard for you to absorb B12 and CoQ10. Also Calcium, D3 and other vitamins might help.

First the diabetic foot sore and then 6 week later a broken femur on the other leg.

I got out of the hospital and only stayed at the rehab facility for a week before I went home. The pain specialist would only give me 3 pain killers vs. 10-12 / day at the rehab facility. The pain was too much for me and I ended up back in the hospital. It has been down hill since then.

I desperately need shoulder surgery - needed it last April. You can hear the bones moving every time I move my arm from 3' away. It is difficult to open a car door, turn the car ignition key or put the car in park. The orthopedic specialist will not even put me on their schedule until my foot is completely healed. The surgery schedule is 3-4 months out - it is elective surgery. Best guess is that I will continue downhill for another 4-5 months - April or May. Will recovery even be possible after a year?

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I really feel for your frustrations and pain. I do understand why the orthopaedic surgeon is asking for your foot to be completely healed though. An operation could cause more problems which the surgeon has probably told you.

Protein intake definitely helps healing, well it has in my case. I had a blister on my leg which went septic and after an operation to debride it, it looked like a shark had had a go at my leg. The wound was 12cm x 9cm and 3cm deep. They were talking about special pumps and plastic surgery. I really changed my diet to include lots of protein, my diet was actually quite good anyway as I had become a nutrition nerd when I started pred. In three weeks after the operation the change was amazing the size of the wound had dropped and it looked so much better. The district nurse said she has seen how diet and attitude can make an enormous effect on healing.

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