Hi - would appreciate any input or advice. I posted this yesterday but had no response - also not sure if I posted it in the right place.
Me15 hours ago
Hi - I was diagnosed with PMR 3 weeks ago and put on 20mg Pred a day - all after breakfast. I have been fine with very few side effects until this last week.
1) started to get really anxious, depressed and cry A LOT!
2) started feeling achy - my joints seem sore - first my hip joints (has improved) and now knees.
3) feel tender in my kidney / adrenal area when I sit up against a hard surface.
Is this all sort of normal?
How soon will my Rheumatologist start to taper the Pred down?
Thank you for your advice.
Written by
Slosh
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I haven't seen your post before and I read ALL posts on the forum so I suspect it may have got lost somewhere!
1) is very typical of being on a highish dose of pred and I'd imagine that may take a bit of time to manifest.
The other two points aren't "normal" no, but 2) could be due to being on pred, one side effect is joint pain, my daughter gets it when on pred. I get backache when sitting against a hard surface - due to the muscle discomfort of PMR and myofascial pain syndrome.
When will your rheumy start to taper? You will have to ask him - a lot would start to taper after a few weeks if all your PMR symptoms are improved as much as they are going to improve. Many would have started you on only 15mg so reducing from 20mg shouldn't be too long.
Thank you so much for your response. It will be five weeks when I see him again. I asked him how long I would be on apredomitaley and he said in his clinic usually a year.
My pattern of response was quite different in that a low level depression lifted and the PMR pains disappeared within 48 hours of taking my first 20 mg dose of Prednisalone. I can relate to feelings of anxiety accompanied by a restless energy initially. The concerning thing is that you are still experiencing the aches and pains. My diagnosis was based on my positive response to Prednisalone. However, steroids are powerful drugs with many side effects and I have a love /hate relationship with them until I remember that I needed assistance to get out of bed and I couldn't raise my arms above my head. I live a much more normal life now punctuated by lots of rest and days that are a write off. Also tantalising days when there seems to be nothing wrong with me at all, then I overdo it and flake out the next day. I have also had an intermittent pain in my right kidney area that doesn't seem to concern my GP much.
Reducing Prednisalone can only begin effectively when the inflammation is under control and you are relatively pain free. I never felt really well though but have reduced in tiny slow increments to 9 mgs.
I really hope your pain has significantly reduced now, you are on the optimum starting dose for PMR. Perhaps you could keep a diary of symptoms and seek an early appointment with the Rheumatologist?
Prednisalone does muck about with your moods, I got very irritable. Tears to, but you might be grieving for your health and strength, quite rightly.
Best wishes, go back to your doctor, it's possible you have been misdiagnosed.
Thank you for your insightful response. I actually recovered within 48 hours and had very little pain left except in my hips and I think that was also a structural issue - in that I had been walking differently for months before. I have Osteo in my knees but even they improved - it's just in the past week that my knees / ankles hurt. Does diet affect you? I was eating very little before and avoiding wheat, dairy, sugar etc (eating mostly meat, veg, a little fruit) - have started eating more and not been so careful - perhaps that is a reason for the aches.
Lots of people find not eating wheat and carbs in general does help their joint pain - sugar and white carbs are pro-inflammatory. They also don't help with weight gain when on pred so maybe going back to your former diet may help. Lots of us have lost weight/avoided gaining weight with pred by being strict about carbs.
I think you hit the nail on the head when you mentioned grieving for your health and strength.
This is a very big thing I have found. I've found myself crying and wondered why.
When you realize how you life is changing because of this dam disease I don't know why you wouldn't feel these things.
It's awful, it's sad, it's maddening , people don't understand.
I'm 82 and was hopping for a few more years of being active, being able to walk my dog, etc. one more cruise.
I'm sure the impact is worse on a younger person who was doing more stuff and yes, there is worse stuff out there but this is bad enough and it is depressing.
Thank you - yes you are right - it is a sort of grieving. I have always relied a great deal on my stamina and physicality. Hope you recover soon and get to go on that cruise.
Went on my first cruise in Niv last year and loved it. However unortunately some events of the travelling and the cruise I think led to me getting PMR.
Agreed - it was my job leading up to going on the cruise. I did 90 says straight (7 days a week) from 07:30am to 11:00pm a night. And have two auto-immune disease.
Your previous diet sounds commendable. Particularly as Diabetes 2 is a risk for us, not to mention the weight gain. Anything you can do to support your general health is a good thing. I am not a good role model for healthy eating. I don't smoke or drink but am a fiend for the comforting effect of chocolate. Carbs do make me uncomfortably full and I feel better for fasting ( not recommended and due to lethargy mostly).
Prednisalone does nothing for arthritis and I recognise those pains in my knees and neck. Do you see a physio? Mine was helpful about compensatory walking pains, she also found that I had one leg shorter than the other and gave me a padded heel to rectify it.
I think I also have one leg that's shorter. I have gone from not been able to eat, terrible gastritis and some nausea to bring hungry all the time. Yes the extra weight would also jot be good for joints.
Slosh, so good that you found this group. Your not alone and you will find as I have so much good information and support. I started out at 20mg Prednisone and in 2 weeks reduced to 15mg. Then through this group learned the slow tappering and did well. A slight hiccup when reduction was at 9mg but learning and moving forward. It's kind of a rollercoaster ride. I wish you well, hang in there.
I showed my GP the dead slow tapering plan and he thinks it's very sensible - AND he puts up with me sobbing about the loss of my health! I've been diagnosed with osteoporosis since taking the pred for PMR - so make sure you get calcium and vitamin D prescribed and, if possible, a DEXA scan to see what your bones are doing NOW - I didn't get mine until I'd been on pred for 8 months.
Take care - it will get better, but a large part of it is accepting the diagnosis and adjusting your lifestyle and pacing yourself - most of us realise that now, but have struggled like you at the beginning.
I cannot recommend Kate Gilbert's book highly enough. I felt as if she was a caring big sister when I read it. And this group feels like the rest of the family, full of knowledge and understanding.
Everything you mentioned in your first post rang true with me. It's a month now since I started the steroids and I have never cried so much or so easily, I feel totally "wired" all the time, still loads of pain at 15mg, especially in my shoulders, neck and knees, and random other pains.
I feel as if I am living on bird seed and supplements, and am very aware of my body's response to any inflammatory foods, mainly caffeine, sugar.
It looks like it's going to be a long old journey for us both.
I downloaded Kate's book to my iPad but i wish I had ordered a paper copy to lend my family so they could see why I stress about it. Professor Dasguptas book is also worth reading, but it's a medical journal so I found it complex. But I needed to feel informed, the dear GP didn't tell me much, and Goodness knows how long I will wait to see a Rheumatologist here in Wales!
Slosh, I too get my very low days and all I want to do is hide and weep. The book mentioned is great, very informative and not complicated. When you feel down, have a search for the 'light humour'. This will give you some laugh therapy. There seems to be all kinds of support here in this forum. There are road shows all over the UK. Do you live here, in the U.K.? Wishing you every (daily )success and there are lots here to chat to when you need it.
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