Comparative newbie here. I was diagnosed (age 53) with PMR and RA in early Feb. I had the typical, nigh on miraculous, reaction to the initial 15mg prednisolone but moved up to 20mg for full pain relief after approx 3 weeks. After 4 weeks at 20mg, I am in the process of reducing to 15mg following a slow taper, which seems to be going well. I have also started methotrexate; I had my second, 15mg, dose this week and will move up to 20mg next week.
Although I note that, anecdotally, a keto diet seems to work for many people I have previously tried a keto diet for migraine management but found that it made them worse. I have taken the view that the growing body of evidence on the importance of the gut biome in good health - including inflammation - is compelling and have overhauled my diet in line with the suggestions of Michael Mosely and Rupy Aujla (The Doctor's Kitchen).
In general, I'm feeling pretty good. My pain is well controlled and I feel like myself again but I'm greedy. I'd really like some energy back too!
I have long experienced low ferritin levels and take a daily iron supplement. Pre-PMR this seemed to do the trick and keep my circulating ferritin levels at a decent level however, the tiredness that I am experiencing feels exactly the same as the way that I used to feel when my ferritin levels were low. As I am still taking my daily iron supplement, and eating so many leafy greens that I'm starting to look like a kalette, I think it unlikely that my ferritin levels are low.
I have discovered that inflammation can, itself, cause anaemia which is unrelated to circulating iron levels (the-rheumatologist.org/arti... and health.harvard.edu/diseases... which would account for my extreme fatigue. MTX can also cause a type of anaemia because it may affect the functioning of the bone marrow but as I've only had 2 doses I don't think that this is relevant for me.
In my (somewhat obsessive) reading of the last couple of months, I have read over and over again of people experiencing fatigue but have not seen inflammation anaemia/anaemia of chronic disease mentioned.
I plan to chat to the nurse tomorrow when I go for my MTX monitoring bloods; I may be able to get her to add in ferritin and blood iron checks. I don't have an appointment with my rheumatologist for several weeks to discuss this.
Has anyone else been investigated and received treatment for low blood iron levels? Do I just have to be grateful that I'm no longer in pain and live with the fatigue? I'm signed off work at the moment (secondary SEN teacher) and am desperate to get back to school after Easter but can't imagine how I will manage it!
(Sorry for the long post, I wanted to ensure that there was enough info!)
Thank you for your meaty, interesting post.I have never even had anaemia mentioned to me during my years with these diseases ( PMR, GCA, LVV) and agree that the most disabling aspect is the overwhelming fatigue that I manage with naps and early nights but insomnia interferes at night. I follow a low carb diet that has made me realise that much as I have always loved carbs, they make my symptoms worse. I am a completely different shape 😕.
I cannot imagine managing to work, even in a stimulating and rewarding profession. Possibly when I had PMR alone with the reasonable adjustments that we are entitled to, agreed prior with HR or my immediate head. This could include an adjustment to working hours and the relief from some duties - even an assistant. I would want that meeting prior to being thrown into the challenging scrum.
It is good to do your own research and become an active member on this excellent forum. Unfortunately, we are met with appalling ignorance, even within the medical profession. We really need to be able to self advocate. Welcome!
Hi Sheffield JaneThanks for your reply. I think that, perhaps, I am particularly aware of my iron levels/fatigue because it has been an issue in the past. Despite having a good diet and investigations into possible causes my GP has been unable to work out why I find it difficult to maintain my ferritin levels without supplementation.
Given the choice, I would have a nap every afternoon however, I sleep really well at night and wake naturally at 6:30 each morning (although I still feel exhausted). I find that if I do nap in the afternoon I don't sleep as well at night and feel even worse in the morning so I am trying to make do with a rest in front of Netflix or with a good book in the bath. I make sure that I go to bed at a reasonable time.
I am very lucky that my school have been incredibly supportive and are not hassling me to get back to work but my role is very specialised (I run a unit supporting autistic pupils in a mainstream school) and cannot easily be covered by anyone else. I know that school will support a phased-return and/or reduced working hours but I know from experience that I would find a job-share a stressful challenge.
Patience, I think, must be my watch word! It's just so frustrating to feel so much better than I did but to be so tired.
"I have read over and over again of people experiencing fatigue but have not seen inflammation anaemia/anaemia of chronic disease mentioned."
Then that is just because you haven't seen the posts about that - with almost 24,000 and counting that is hardly surprising. The anaemia of chronic disease does tend to improve once the inflammation is treated and some of us never were anaemic - my Hb was a bit lower than it used to be but at 15/16 it wasn't low by any standards. It is also not treated, and should not be treated, by taking iron - there is enough iron in the body, just in the wrong place and taking iron supplements can lead to iron overload. Ferritin is possibly raised anyway - it is one of the things that reflects inflammation as part of what is called an acute phase response - raising the ESR and CRP as well. However, the fatigue is a component of the autoimmune part of the disorder and can come in various forms - as discussed in the final link of this post:
The pred only manages the inflammation - the actual underlying autoimmune disorder that causes it remains, chugging away in the background, attacking and damaging body cells and leading to swelling and pain in the relevant tissues. It's a bit like having flu all the time, that never really gets better. Or in current parlance - Long Covid.
Here we don't really recommend keto eating, just low carb eating. It is next to impossible to attain keto when on pred anyway but keto eliminates valuable foods from the diet and is harder to stick to than low carb. The aim with low carb is to reduce the risks of weight gain and developing steroid-induced diabetes which so many doctors tell patients are inevitable with pred - not true at all. A lot that is said about pred isn't accurate - there are ways to mitigate or avoid many of the claimed side effects of pred. I suffered several of them in the first 5 years of PMR - I wasn't even on pred!
Hi PMRProThanks for your response.
It's clear that I need to try to be more laid back and accepting of my condition and the route that it is going to take rather than thinking that I can pro-actively manage my way through it.
There are pro-active things you can do, but there are limits to all of them and some work for some and not others. Nothing will achieve a cure except time. Acceptance is key however - because once you accept where you are, it is possible to live well by making appropriate adjustments to lifestyle factors. Trying to fight your way out never works - PMR will always win and likes to bite back!
"PMR will always win and likes to bite back!" will be a useful motto in the months and years to come. Thank you.
There is an old joke: 'God, please grant me patience ... but please hurry'. I fear that this sums me up.
I am sure that many, many others have trodden my path on their PMR roller-coaster ride. By nature, I am a do-er, a fixer, a smoother of paths. I like to be the captain of my ship and when something happens to me I like to take charge.
Given a PMR diagnosis, I read and research, having carefully researched the side effects - and what can be done to minimise them - I take the drugs, I re-vamp my diet, I exercise gently and lo! I start to feel better.
Much, much better.
The drugs are doing their thing and the pain has gone.
I guess that you know what happens next ... I over-do things and hit a wall of exhaustion. Despite my extensive reading, what I hadn't really appreciated is the extent to which the underlying condition affects energy levels. I had thought that I was exhausted by being in pain rather than fully understanding that the fatigue is a function of the condition itself.
I know that I am not alone in having been extremely fit and active pre-PMR. I'm only 53. I work full-time - and am likely to have cycled 12km and swum 1km before I get to school at 8:00. I run half-marathons and a holiday is likely to involve LOTS of walking, for example walking Hadrian's Wall from Coast to Coast.
Frankly, and again I know that I am not alone, I am terrified. Not particularly of the pain - although I did find that terrifying before I was diagnosed and started on prednisolone. I am terrified of the exhaustion and that it will stop me being me. Stop me doing the things that I love.
I'm also angry. This isn't the deal that I made with my body. I smoked, a very little in my teens but haven't had a puff since I was 18. Although I drink alcohol, it is limited to a drink or, very rarely, two on 3 or 4 nights a week at most - well within safe guidelines. I love food, including sweets, cakes, crisps etc. but have always had a healthy, home-cooked, diet with lots of fruit and vegetables and have maintained a healthy weight, I have always exercised. Surely, my body should be keeping its side of the bargain?
I know that I'm lucky. I'm so very lucky. My sister died of cervical cancer at 41, leaving two young daughters. In contrast, I have a treatable auto-immune condition which is likely to blow itself out in 1, 3, 6, 10? years. I was diagnosed early so any damage caused by the inflammation should be minimal (although damage from the RA is likely to be more significant). I know that, for the most part, the pain is likely to be managed by drugs. I know that I am lucky - but just at the moment, I don't feel lucky.
Sorry, this has now become a whining stream of consciousness and is a long way from my original question. I have read it and re-read it several times and have, on balance, decided to post it in case there are others who feel as I do and who may feel some comfort in knowing that they are not alone in their anger and frustration. The rest of you can feel quietly smug that you're not such a whining, self-entitled brat!
That is worth a thread of its own - because there are, as you so rightly identify, a lot of people who feel the same but bottle it up. And that doesn't help either, The NE of England charity, now wound up but it predated this one, produced a DVD called "You are not alone".
It is a bereavement - you have lost your previous life and have to find a replacement that will inevitably be a bit different. It doesn't have to be worse unless you want to make it so. And you may well get back to walking coast to coast - Skinnyjonny got back to Annapurna 6 years after being diagnosed with PMR and being in a wheelchair
Do please put away that stick and those horrible words you say about yourself, you don’t deserve it. I think your soul needs a hug.
This may sound a bit happy clappy, but I do think making a bargain with the body is more than tinkering with the ‘easy’ bits like diet, alcohol etc. We do these things and then expect the body and soul to be happy about dealing with absolutely everything it goes through. You are thrashing it through an illness and you are dealing with huge loss on a number of levels but it still has to make do with not being listed to. Your sister’s tragic story does not mean that everything that befalls you is insignificant and isn’t deserving of love and care.One thing I learned was that I had to stop identifying myself by the things I did, namely being a nurse, mountain walker, going like the clappers all day, being the strong one emotionally etc etc. Due to the GCA and high dose Pred those things went over night aged 54 and it slowly dawned on me over the first year that I was not those things any more and indeed I didn’t go up in a puff of smoke. Four years later I’m getting there without the pressure of clinging on to physical capability as benchmarks. It was mighty tough and I still have days when I feel sorry for myself, but actually I no longer live in fear of not being superwoman and that’s liberating. I still do things I like but not 100 miles an hour. What we do isn’t always sustainable and eventually your body won’t be able to do these things through ageing or wear and tear anyway; it has just come a bit early. Your body has tried already to slow you down but you are ignoring it at the risk of another crisis that may be worse. The fatigue is part and parcel of the an autoimmune condition and can be the worst aspect, especially when one has expected a quick fix and a thrash is what’s needed.
Again, you can do these things but for now try to alter the benchmark of job well done so you can heal on all levels.
Thanks to PMRPro and SnazzyD for your replies. I'm so sorry to take so long to reply - I thought that I had.
PMRPro, thank you for 'introducing' me to SkinnyJonny. Like him, I am a parkrun regular and am looking forward to getting back to parkrun once they resume in the UK. At the moment, I have no plans to run and will certainly not be beating SkinnyJonny's times as I couldn't do that before PMR. Thank you, also, for framing the diagnosis as a bereavement; it has given me food for thought.
SnazzyD, thank you for your kind words. Alas, I've always been very good at holding myself to much higher standards than I would ever expect of others - I promise to try harder. A fortnight on, I have realised that my worst days are the two following my MTX dose so I am starting to be able to plan activities around this, get my husband to cook on Tuesday etc.
This week, with the re-opening of outdoor pools, I have also been able to get back into the water, which is always good for my mental, as well as my physical, health. I was pleasantly surprised that having experienced shoulder, hip and knee stiffness on Tuesday, when I stopped after 10 lengths, I was able to do 14 on Thursday and 20 today (I usually swim 1km - or 40 lengths, three times a week). Unfortunately, the nearest lido is 18 miles away and I feel hugely guilty about the environmental impact of driving there and back so I may not continue but will have to hang on for the indoor pools reopening. Sadly, I'm not brave enough for open water swimming despite the potential anti-inflammatory benefits of cold water swimming!
Given the last year - I imagine you may well be in credit for the environment! You can have a bit of mine - I've only filled the car up twice in over a year! No flights for 2 years and probably won't fly for a very long time. But don't go mad - keep those rest days in there!
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