No success in prednisone tapering

Hi Kathy,

Please rest assured that you are not alone - we are all in your position or have been.  I have been on high doses of prednisone but through sheer persaverence have managed to very slowly taper down to my maintenance dose of 5 mgs on numerous occasions.  I also go through the down feelings whenever my dr has increased my pred rather than increase my opioid to treat pain.  I also have ankylosing spondylitis and interstitial lung disease. I feel that I am always taking a backwards step each time I am having flares of severe pain.  I also have a psychiatrist that I see when I need that extra bit of support.  I too struggle with my weight, moon face, large stomach - hell, I look like I'm 9 months pregnant!!  Funnily enough I walk like I am too!  

Every one of us go through our depressed days, some cope better than others.  My gp has referred me to a dietitian and also more physiotherapy - maybe you could ask your dr about seeing them also.  A few weeks back I felt that I was too tired and down to bother with seeing them as well - I am sick of drs - but I know that I have to try and I tell myself this on the days when I am feeling not so sad.  I have also been diagnosed with moderate sleep apnoea which makes me even more tired during the day so I have to get and use a cpap machine now. so that I don't stop breathing all the time each night.  So yeah the extra weight we can gain from pred does affect your breathing and quality of sleep.  All I can recommend is that you talk to your dr about how you are feeling and what are your options and please know that we all understand what you are going through and are here for you .  Hope this helps and keep in touch - onward and upwards!!

 

Hi Kathy, all your symptoms are what I had, and many more of us. I remember posting and saying the same as you, a large moon face hair falling out, facial hair growth, sweats, and worse of all gained over 2st in weight. I cut out most carbs in my diet which is helping the weight loss. Predesolone might be the drug for PMR but we are not told how the side affects us mentally. Try not to feel too down I started walking at 7 

Every morning with a friend, it just feels good to get out and it also helps with your

mood and weight, you will be able to taper down which will make you feel better and

your moon face will start to disappear. Keep in touch. when you are feeling down just post how you are feeling it does help. Good luck. 

 

Just a big humongous hug of being there and wearing the tee shirt (although that gets squeezed when I’ve overdone the jersey new potatoes...,😱. Your tapering time will come - this won’t last forever, although it feels like it sometimes 🤗xx

Hello Kathy, I could have wept (which is very unusual for me), when I read your posting! I know exactly how you feel, hair loss, face craters, thin skin, weight loss, the lot and I echo what our other contributors have written. I have just had spinal decompression, losing two discs as well as 3” in height, resulting in a huge mass that has gathered around my middle and a threat from my Consultant that if I don’t lose weight, having Spondilitis and Arthritis throughout my spine, I will eventually be in deep, deep trouble. How do you lose lots of weight when you can’t exercise to help as you would if you didn’t have these issues? I am in pain throughout the most part of the day, on three different slow-release Opiod drugs and Oramorph, the liquid version, which means that I feel ‘not really with it’ etc for the greater part of the day. Phew, depression! However, knowing that you are not alone in these things and that things could be a whole lot worse, definitely helps you get your grip. Keep smiling, you will get there. 

Tell us a bit more about what you have, how long you have had it, what doses you were on and how long it took you to get to 20mg. It helps to provide suggestions.

Has anyone suggested you cut carbs drastically to help the weight problem? Pred changes how our body responds to carbs and raises the blood sugar level as well as causing the liver to release random spikes of glucose into the blood. These trigger insulin to be released - the blood level falls too far very quickly and you crave carbs to bring it back up - rinse and repeat! The excess insulin causes any excess glucose to be deposited as fat pads in the usual places. When you cut carbs enough the body is forced to use the fat stores to produce energy - and you lose weight. It may be slow but it does work for most people. I gained over 40lbs due to PMR stopping me exercising - and by going low carb I lost a good 35lbs of it. There are lots of people on the PMRGCA forums who can tell a similar story - either they didn't gain weight in the first place or they lost it even while still on pred.

And if you are so sad - you need to speak to someone rather than descend into a real pit of depression. If you can find some counselling it may help you come to terms with your situation - there are many things to be sad about when you have a chronic illness and talking about it can help a lot.

I really feel your pain. I worked so hard to lose 40 lbs last year and now have put most of it back on. Back into my fat clothes! At 17.5 mg prednisone. Tried going to 15 then 13.5....had major flare so now back at 17 5. Just trying to be patient but it is very hard but I know we will make it. Helps to know that others are going thru the same thing. Hang in there! And I will do the same

Hi kathy6195,

I can sympathize with you. I was stuck at 24mg of Prednisone for a long time but I am now at 7mg. I had to sleep in a recliner, which helps, and I will not even talk about my weight. But over time all these 'things' do improve. There are also some options that may help you such as Actemra/Tocilizumab, you can talk to your Doctor about them. You can get through this. I will keep you in my prayers.