Prednisone​: I have been on prednisone for 4 years... - PMRGCAuk

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Prednisone​

JohnGadd profile image
13 Replies

I have been on prednisone for 4 years From 30 a day down to 4 mg. have tried several times to get off completely and pain from PMR comes back! I also have Diabetes type II, Med blows sugar control up, glucose levels up 100 % In constant pain and tired all the time. Add the side effects of Metformin 500 ER and I am almost homebound!

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JohnGadd profile image
JohnGadd
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13 Replies
SheffieldJane profile image
SheffieldJane

How miserable for you and the Prednisalone is not helping at this low relatively harmless dose. I think I would rather be ultra strict with my diet and take a therapeutic dose of Pred. I don’t know anything about Metformin. But that’s no way to live, is it?

gifford7 profile image
gifford7

I don't think your high glucose and diabetes is due to the low dose [4mg] prednisone. I'm prediabetic on hi dose prednisone for GCA for several months and taking Metformin 500.

i'm now down to 9mg prednisone and off Metformin with diet changes [low refined carbohydrates--cut out the cookies, cake, sugary foods] and exercise [walk at least 30 min/day]. my glucose reading and Aic have come down. Reference from Mayo Clinic "With the exception of cataracts, morbidities associated with prolonged low-dose glucocorticoids in polymyalgia rheumatica (PMR) were no more common than in matched comparators without PMR, researchers said.

" medpagetoday.com/rheumatolo...

Bottom line I suggest stay on low dose pred to control fatigue symptoms and try low-carbo diet and exercise.

patriciawhite profile image
patriciawhite

It's a struggle but keep trying even reduce by halves maybe ,I don't have diabetes so I have no knowledgeable advice only to say it took me several rises and falls before I got off the pred .Maybe the doctor can suggest some other way to help combat the way you feel .I hope you get some relief soon .

Constance13 profile image
Constance13

Morning John! At least it is here in Germany.

I have had PMR for 6 1/2 years and have only ever got down to 4mg. I have often tried to go down to 3mg but have always suffered. I have other issues and the doctor said only a couple of weeks ago that he thinks I will be on pred for the rest of my life. Since then I have given up trying to reduce. 4mg is a very low dose and most of the side effects don’t occur at this dose.

Try not to worry. What will be, will be! Acceptance is mega difficult I know. I imagined I’d be travelling, going on long holidays, enjoying my whole retirement, 😎🍾🍸 but is wasn’t to be. Instead I have a walking stick for using indoors, a walker for “stroling” with my husband and a senior electric mobile for shopping, fresh air, etc on my own.😀😀

Slowdown profile image
Slowdown

Hello John, I am 3+ years into PMR at 8mg currently and was diagnosed with steroid-induced Type 2 diabetes 18 months ago. With a low carb diet, plenty of fish, masses of vegetables, yogurt and the occasional slice of sourdough toast (I missed bread the most - and life's too short to start denying yourself!) and plenty of walking I reversed it and have kept the glucose levels under control. This is a good site for ideas dietdoctor.com/low-carb/rec....

I was so happy the day my GP phoned to say I was no longer in the Type 2 range, and the 'diet' has become a lifestyle choice that works for me, not to mention the mental boost of having taken decisions that gave me a sense of control. Wishing you luck, it sounds as though you may be on too low a dose of pred if you are in constant pain though. Maybe a matter for discussion with your doctor?

Valnvaughan profile image
Valnvaughan in reply toSlowdown

Well done. I managed to get out of pre diabetic range twice whilst on Pred by diet similar to you.....as you say should be a LIFEstyle choice. Valerie

SnazzyD profile image
SnazzyD

Oh how frustrating. Do you find that your sugars are up even with a strict very very low carb diet?

PMRpro profile image
PMRproAmbassador

I have nothing to add - except to say that they are all correct and that the median duration of PMR is just under 6 years. There is still time.

Fimckenz profile image
Fimckenz

For interest. I read on here about the alternate day predisilone medicating, when down to low amounts. I researched and found that it was not too successful for PMR sufferers and definitely not for GCA sufferers. But a PMR expert on another site said it could be worth a try and I would know within a day or so if it worked. Well so far so good!. I was on 3mg and have been for ages, started the slow taper with 2.5. Over a week ago I started the alternate routine, 5mg and 6 mg. I have had no discomfort or pain. It has been suggested that the side effects of steroid withdrawal could be alleviated with this method. I am going to keep at it and keep tapering.

PMRpro profile image
PMRproAmbassador in reply toFimckenz

Me? I used ADD for PMR for a couple of years and it was OK. But if your dose doesn't last for 24 hours in the first place - ADD won't work in PMR.

Fimckenz profile image
Fimckenz in reply toPMRpro

No it wasn't you, another support site. It would appear that the double dose is definitely lasting over two days for me - so far! I have to say my usual discomfort area, pelvis hips feel great!

PMRpro profile image
PMRproAmbassador in reply toFimckenz

Don't be too sure - I come in other packages too ;-)

BonnyQuine profile image
BonnyQuine

I've been on pred for 2 years - from 40mg down to 8 today (cross fingers, touch wood . .)

Was diagnosed w diabetes within days of starting pred (had some sort of crisis) - so v keen to get off pred, but reducing not easy.

Metformin was v good for diabetes control, but gave me terrible gastritis so, after a few months, I stopped it. There are alternatives. I use Repaglinide before meals (dose varies; short acting), Alogliptin (one a day) and Dapagliflozin (one a day). This is effective for me, and doesn't cause hypos - a big consideration. I have also cut out all refined carbs, which helps a lot.

Like many of us I am also tired all the time. I had thought that the pred side effects would lessen as the dose came down, but have found it doesn't work like that - it just 'evolves'. On 7mg and below, in addition to being tatt, I became wobbly and had persistent nausea. Adrenals? Now heading back in that direction (after a recent flare) - sigh.

Dealing w all that, it's just not worth having to put up w metformin side effects as well. Not everybody gets them, but I found them absolutely disabling. Constant pain is not the way to live, if you can avoid it. See your doctor, and demand alternatives. (Not insulin, because of the restrictions it necessitates, and be careful of medications that tend to cause hypos.) If GP is clueless, ask to be referred to a diabetic specialist.

Best of Luck.

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