A year ago I was told I had PMR & was put on steroids. I excepted that and suffered the weight gain the moon face cramps & water retention. Last week after seeing a fantastic consultant was hit by a massive shock . I have moderate osteoarthritis in both hips also moderate disc degeneration at L4-L5-S1 spaces & spina bifida occult. I have reduced from 25 mil to present day 15, mil . I am reducing by 2 mil a month. I am very upset as I never needed to be on the steroids as I don’t have PMR . So battling with my new problems which are extremely painful hips and pain in both legs that has reduced me to walking with crutches and bent over . I can’t straighten my back plus difficult bowel movements. I could have done without the effects of these steroids on top of everything else. My question is will I suffer the same effects as you guys as I reduce.
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Vito5566
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Goodness, that must stick in the craw! I have some questions and I know they are not directly answering your question but I think it needs to be considered. What was it that convinced them it was PMR? Did they do scans or x-rays at that point? Then, what was it the that made them think these issues are not just *in addition* to PMR but *instead* of? Did the steroids work at any point? Were you on crutches before or has it all got worse over the year?
If you are on 15mg now a year later, what has your dosing been doing over this time? Was it unresolved pain that kept it up?
Regards the weight gain, did you go on a very low carb diet at any point to deal with the weight? Ideally, had you been told this, the weight could have been prevented but it’s never too late! . Low salt really helps water retention too until you get to below 10mg when it needs to be brought back in a bit for the reason below. Regards cramps, did you try magnesium supplements and foods with good potassium levels?
Finally to YOUR question! When you ask about the problems do you mean the potential for adrenal dysfunction? If so then yes, it is a possibility like anyone would be after being on above 10/15mg for more than 3 weeks. In preparation I would go to the “NEW FAQ’s” on the right here and go to A for adrenals for vital information.
If you mean increase in pain, if any of your pain has an inflammatory component then you might get an increase as the dose drops more. With PMR that’s called a flare if the autoimmune activity is still ongoing. Sometimes people find their additional osteoarthritis or bursitis (esp hips) gets a bit more feisty because to some extent the Pred has masked any bit that have got inflamed. I’d keep an open mind and a diary of what hurts and when if it happens just in case you’ve got a more complicated picture than first thought this time round.
I try to answer your question as best as I can . So in January last year had frozen shoulder on one arm & tennis elbow on the other. Was put on 50 mil steroids for two weeks & by March all had cleared up . April was suffering with arm & shoulder pain but no neck pain. I had no tests or scans but was told I had PMR which I had never heard of . I was put on 30 mil always been fit & well before all this so took the doctors advice. I never found you guys till October last year. Between April and August was doing pretty well but had started to feel moderate hip leg & back problems . Also feeling a little weak but put it all down to PMR . Now occult spina bifida had been asleep in my body obviously all my life & a trauma can set it off . I was walking fine & working thinking PMR was not such a terrible thing. August everything changed when I had to lift my mum wheelchair slightly after getting stuck in soil . I do believe the steroids probably were helping with the back & disc problem. After August I went down hill & woke up the spina bifida. I experience much more pain in back & hips and the weight gain swelling moon face . By October I was on 24 mil when I found this site . Between October & Xmas I was still on 24 mil as I was getting worse . In February this year was really Struggling to walk no more then 20 metres absolutely agony. Was now on 19 mil work was being destroyed. Saw my specialist in February this year and got my results this week . Put my self on crutches which are helping as I need to lose weight & am on a low carb diet. Specialist wants me to reduce by 4 mil a month which I don’t agree with but have been going down half a mil a week which seems to work for me. She wants me to go from 15 to 5 doing 2half every two weeks but I will have the final word on that . Just started taking Vitamin D & magnesium. Out of the 3 problems I have I am not sure which is causing the extreme back & leg pain. I will ask her but she away ATM . Still suffering cramps &,moon face . I been told to stay as active as I can & number one is to lose weight. Bit scared about spinal bifida. Hip replacement I can manage. I think the trauma in August woke the spine bifda up. Also now suffering severe constipation due to that . Worked as a London black cab for 36 and sadly decided to call it a day. I’m positive as occult spinal bifda is the mildest form of it & have decided to take the year off to get well but now money is tight. Have applied for PIPs . That my lot
Your reply would be great to put in your bio to save telling your story lots of times. Sorry to hear you have had to pack up work. It sounds like a very difficult time for you especially when you feel you have to fight your corner. PMRPro has given advice on the reduction and you’ll no doubt do what you feel is right for you.
Regards weight again. I’m not sure if the low carb is a new thing for you or has been going for some time. Some of us need really low carb when taking Pred, and low almost needs to read no, certainly no pasta, grains, rice, maize etc at all. Have you had a HbA1c blood test for diabetes in the last 6 months? If not, it’s worth asking.
Weakness can be a real problem with Pred and with a complicated picture and deconditioning it can be difficult to see what is caused by what.
Constipation is one thing you don’t need on top is it? Are you taking anything that’s targeted to your issue? Taking the wrong type can make matters worse.I mean tailored to whether you need a stimulant, a softener or something for your bowel to be able to ‘grip’ hold of the stool?
I will do that Snazzy D . Been on the low carb a week and beginning to feel I’m moving in the right direction & I enjoy this diet as I like chicken cheese & veg . I got rid of bread rice potatoes and biscuits & changed my cereal to making my own breakfast keto type . Been checked for diabetes all ok . Started a laxative drink today from the doctor so hopefully it will work. Will keep you updated & thanks once again
well done, best foot forward. The drink may be a bulking agent like ispaghula husk. You need a good fluid intake so you don’t end up with crowbars. Sometimes people get quite windy with it. If it is a Macrogol it helps keep water in the bowel to soften things up. See how you go, there are options
Hi just to add to what pmrpro said regarding quick reduction of pred , having had to reduce down to 10 quickly, myself I found it really helps to rest plenty with each drop . By what you are saying everything is a struggle so just don’t be too hard on yourself and rest up . Hopefully with the low carb and your new diagnosis you will be soon getting the right treatment and feeling better.
By giving up work after 36 years of driving my taxi in London I now have plenty of time to rest so thank you for your good words . Yes you are right I can be hard on myself so will try to let things not get to me. Already feeling better with the low carb diet after just 10 days . Thank you for your advice and wish only good health to you
I don't see how they can blanket say it isn't PMR at all - you could have that too, Obviously the other problems are causing a lot of problems - but you CAN go at the reduction speed she says down to about 10mg pred since you aren't concerned about PMR symptoms returning which is one part of the slow tapers we bang on about. From 10mg you may need to go more slowly because of the adrenal factor but that shouldn't be critical until 7mg, So if it were me - I'd be going 2,5mg at a time every 2 weeks or 1mg per week down to 7mg. It probably won't be comfortable but the slower you go the longer the discomfort will be and the longer this stage will take.
It is such a shame PET-CT is so expensive and difficult to access quickly when the diagnosis is made so it could be done before pred is started.
Hi no I have had loads of test sorry forgot to mention it bloods and definitely not PMR but thanks for your advice on steroids. I will take your advice as I trust you very much. I keep you updated and would like to thank you & Snazzy D & everyone on here who have helped me so much. Good luck to all of you
There are NO tests that diagnose PMR - so equally none that can rule it out either. You are on pred so the inflammatory markers SHOULD be in normal range - and mine always was "normal". It is the greatest unmet need in PMR and GCA, that there isn't a specific test that is reasonably reliable. It would rule out the possibility of mis-diagnoses.
won’t know until I see her in April. I just picked up 2.5 steroid today and I been told to keep active as best I can . All my tests were positive concerning PMR but I take note on what you are saying. Next week I be doing 2.5 every two weeks I know it will be difficult but I’m determined to do it. I keep you updated
Thank you Nextoneplease . Very kind words and hope you get well asap . All of you on here have helped me especially in the early days. I send my best to everyone on here
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