I'm due another routine rheumatology appointment in approximately one months time and as usual, a full battery of blood tests are required.
I've had PMR for over 3yrs now and spent much time researching my condition and the effects the steroids COULD have on my body! I know we're all well aware of the many unwelcome side effects that can develop when taking steroids long term and therefore also aware of the need to find ways to try and counteract these problems!
I've worked hard (and still do) at reducing, minimising & preventing as many of these side effects as possible and it would seem that so far, and for now at least, my efforts are paying off.
My blood tests covered CRP & ESR levels, full blood count, Calcium & Vit.D levels, bone & liver profile, fasting blood glucose & fasting blood cholesterol, thyroid function, Vit.B12, Urea & Electrolytes, Ferritin & Folic Acid levels. (May have been a few others I've forgotten as on holiday in Devon right now so not got test results in front of me!)
The results for ALL of these tests came back within normal range with no 'further action required'.
I checked them against the test results from 6mths ago (when the results had been the same) and everything had remained stable and constant.
I was extremely happy as you can imagine, and it reassured me that for now at least, my continued efforts, which include, eating a healthy low carb diet, engaging in gentle daily exercise routines and understanding what 'mindful' tapering looks like, have all contributed to this small triumph.
I'm currently on 5mg of pred and tapering VERY slowly, ½mg at a time over a 6-10wk period, depending on how I feel and what's been happening in my life at the time. My diet helps maintain healthy glucose and cholesterol levels, keeps my weight stable and of course, lower weight minimises the risk of many of the other possible complications arising too.
Most of my 'interventions' and strategies have been learnt from here, and I'm so grateful for the knowledge gained and advice received.
I've learnt that although there are some things I may not be able to completely prevent from occurring, I still may be able to slow their progress down or minimise their impact. For instance, I have early stages of steroid-related' cataracts on both eyes but these are stable for now and I stay out of the sun and wear sunglasses with lenses that protect & filter out the harmful rays that could accelerate the condition. My muscles are weak & 'wasted' but sensible exercise helps keep them as healthy & toned as they can be right now.
I know that sometimes, it just feels like too much of an effort to 'put the work in' (and staying healthy whilst on steroids IS hard work) but it's so important to do whatever you can because it'll pay dividends. Don't give up because sometimes even small changes can produce noticeable improvements.
Being on steroids is not something any of us would choose, but it really isn't all doom & gloom. I completely appreciate that for some people it'll be much more of a struggle than for others but I just wanted to show the more hopeful and positive possibilities there can be with a better understanding of the condition and the medications involved.
There is ALWAYS something we can do to improve or ease the impact of steroids and PMR on our lives.
Onwards & upwards!
Written by
Kendrew
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Morning Kendrew, hope you enjoying your holiday and the sunshine (with appropriate safeguards). It's always good to read a positive post and to see that there are successful ways that can/do mitigate the side effects of our medication. Take care and no racing the donkeys along the beach!!!!
Wonderful to hear 😁 We all have a personal responsibility to try to look after ourselves as well as we can , as well as availing of the medical resources we hopefully can access. Brilliant when both come together! Have a wonderful holiday 😎
Thank you for your very positive post. I have been trying to do the same ( brain fog not withstanding). I felt that I managed PMR quite competently. When I reached 3 mgs of Pred I honestly thought that I was emerging from the woods after 4 years. An ultrasound scan then showed the cells of GCA /LVV in my armpit and since then I have felt quite lost. This condition seems less predictable and the symptoms vague but unpleasant. Although this is extra cranial GCA I still feel fearful for my eyesight. I feel that I lack sufficient knowledge to manage this condition effectively. I thought I was winning with Tocilizumab and managed to reduce from GCA doses of Pred quite quickly to 10 mgs but always felt exhausted and unwell. I often had minor infections like UTIs, eye , sinus and nasal troubles and more antibiotics than I have had in my life before. I eventually stopped Tocilizumab ahead of time because of the painful symptoms of diverticulitis ( not seen during a colonoscopy, just diverticulosis deemed normal). I stopped Tocilizumab for a while and when I resumed the lower abdominal pain, associated diahorrea and UTI symptoms worsened. I am left with these symptoms -fatigue, thirst, varying degrees of abdominal pain, accompanied by IBS and UTI symptoms. I manage this with lots of water, sleep and a bland diet - even apple juice sets it off. Even taking coated Pred is a challenge when they have dissolved. So I have gone from managing and understanding PMR to being comparably in the dark about my present condition. Not much help so far from the GP ( Lansoprazole, Gaviscon)and Rheumatology can only suggest Methotrexate which I honestly don’t think will help. I would love to get back to calmly managing how I feel and wonder if I have developed another autoimmune disease or this is drug damage?I have my eyes checked thoroughly, take meds for hypertension but nothing helps my gastrointestinal system much.
Sorry for this rant, I really was managing before and now I feel lost. I only take 6 mgs of Pred now and remedies for protecting the digestive system.
I can only imagine your disappointment and frustration at all your efforts eventually resulting in a deterioration of your situation.
I'm genuinely sorry to hear that Jane. I do always consider that there's every chance things could change in a heartbeat and what I currently perceive to be some kind of 'stability' may not always be as manageable. I've taken on board what you've said and will just be thankful for each good outcome I experience, as clearly this may not always be sustainable.
Hope never dies. I have been reading dense medical papers since we last spoke and gleaning bits of useful stuff. The drugs we take are very antagonistic to our digestive system and some unlucky people end up like me. As you say onward!Off to a very nice hotel in grounds 5 minutes from home to avoid the stress of plumbers ripping my house up. The ostrich has a point.
Can understand your rant Jane. We can feel we are doing reasonably well and then something happens that knocks us sideways. That’s happened to you quite a lot and I can only imagine how frightening, confusing , frustrating and debilitating all this must be. Stick in there, nothing more we can do, and I do hope that you will have some light at the end of your tunnel and these symptoms will settle down. X💐
I forget to say how much good your holiday seems to be doing you. You picked the right time for glorious weather. Continue doing so well managing this life interrupting disease. 🪷
Love your posts!!! will you either put on here a "typical day of eating" or DM/email me with it? You are my inspiration. The only thing I don't really have under control is eating.!.. a plan... might help
I have this mass of blood tests and the majority always come out green in normal range. Apparently because we have regular tests people with PMR actually increase their lifespan!
I know what you mean, but we must not give in. As long as we are on this side of the turf we can contribute to the wellbeing of the planet by doing the best we can in our small corner. I know I often feel despair, but no one can save the world alone, and no one has to. I often feel like an ant struggling with a burden, but look what ants collectively can accomplish!
That is a very good point. We are under surveillance and we watch the obvious health directives. Rest a lot, low carbs, get tested, become knowledgeable. 😊
Onwards and upwards indeed. It definitely is hard work but I have found that a low carbohydrate diet has been the one big thing that has helped manage my Prednisolone intake. I was determined that I didn’t want to put on too much weight and have to buy new clothes. Well worth the effort as I have remained the same weight all the way along. I have had several hiccups along the way whilst tapering but I try very hard not to expect problems…..Welcome to sunny Devon by the way. I hope you are enjoying the wonderful sunshine…… I am so lucky to live in this part of the world. We have it all on our doorstep… lovely beaches , beautiful moors and wonderful cities. Enjoy…
I think this disease can be all consuming for some people as they ceaselessly endure varying degrees of challenges, discomfort and illness, and I know that for some it will seem like an impossible task to keep on top of everything.
It's hard to always feel positive but I've learnt to live one day at a time and although I've experienced a few setbacks myself over the past 3yrs, it's the support and help I've received from others here that motivates me to always try and pay that forward.
Re-activating this thread because it's a help to those like me who are trying to maintain a minimal amount of muscle strength but struggling on 5 mg of Pred (into my 13th month of Pred for GCA /LVV /PMR) to keep up. I went to my usual Pilates class this morning and found my legs and arms trembling uncontrollably during some of the exercises that I could do before with no issues. I'm aware of the fact that treatment tends to affect muscles and am not overly concerned. I know I'll get my strength back some day. I still enjoy an hour long walk when I pace myself. Just a bit self-conscious about my wobbly legs when everyone else in the Pilates class seems to be able to control theirs (doing a shoulder bridge with feet on a 25 cm squidgy ball)!Hands up to all the people on this forum who are always there with reassurance when we need it 🌼💕🌻
Just a bit self-conscious about my wobbly legs when everyone else in the Pilates class seems to be able to control theirs (doing a shoulder bridge with feet on a 25 cm squidgy ball)!
As we have said many a time, don't judge yourselves against others, even those with same illnesses as you - and certainly not to others that don't!
Your trembling arms/legs may be due to adrenals - think we have discussed them before - but you know where my post is.. if you need to refer to it again.😊
..and please talk to your Pilates instructor - all poses can be adapted slightly to fit YOU... I still have a couple that my operated on shoulder [now rotator cuff issue] can't manage....
.. as you get better, build up slowly to this particular pose - and one day you will be able to do it - with aplomb!😉
The instructor is very good, and always suggests easier options, so no worries there. And, yes, I have referred repeatedly to all the invaluable info you and PMRpro have provided in the past 😘
Even when I was doing Pilates regularly, there were days I couldn't get above a very beginner level to my usual level 2 or 3 stages on but our teacher was adamant no-one should try to "keep up" and everyone, PMR or not, had the odd wobbly day.
And then there were the young rugby club crowd who turned up and obviously thought "how difficult can this be when all these grannies are doing it". Talk about wobbly ...
Just to say that when I posted the original message 10mths ago, I was taking 5mgs of prednisolone daily. I'm now still only down to 3½mgs ten months on.....that's how slowly I'm tapering, but so far the DSNS tapering regime is proving successful and I consider that 1½mg drop to be a definite achievement.
I'm in the gym each weekday morning too, and enjoying my yoga every weekday afternoon. (when I'm able)
My stamina is improving very slowly & very gradually, and my muscle tone is also showing signs of improving.
All of this takes a long time, a lot of patience, and an understanding & acceptance of my limitations and boundaries though.
If I experience anything that suggests I'm pushing myself too hard.....and I'm afraid that experiencing trembling arms & legs would most definitely be a 'red flag'..... I reign things in a bit.
Feeling a little bittired after an 'activity' I consider to be acceptable because it doesn't persist and I recover quickly.....but 'exhaustion' would warn me that I've definitely overdone the exercise.
Unfortunately, PMR doesn't allow us to continue as 'normal', and although I'm aware that there may be a small minority of people who feel they are able to do so, this generally isn't the norm.
This doesn't mean life stops...it just means making some changes and adapting to different expectations for a while.
I was also attending the gym every day before PMR, ..... running, weights, classes, etc ......I was very fit, strong & healthy, so being diagnosed with PMR was hard to accept.
As soon as I felt knowledgeable enough about what I would and wouldn't be able to do..... and more importantly, why!....I felt ready enough to return to the gym.
I go for walks, just as I did pre PMR, but I don't walk as far or for as long. I'm gradually increasing both distance and time though.
Don't stop doing what you enjoy doing exercise-wise, but do listen to your body and don't ignore those 'red flags'!
I have adopted much the same attitude and am kind to myself! Off at the end of the week for a family reunion hosted by my brother just beside the Bassin d'Arcachon. Looking forward to seeing everyone and hopefully getting some ☀
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Another auto immune condition: Lichen sclerosus
Happy at 4mg
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