I’m a returning poster who’s looking for advice on the next stage of my journey.
Following my PMR diagnosis and being on 15mg of Pred, I’ve started tapering to 12.5mg for the last 3 weeks. My bloods are fine, I don’t have any physical pains & my mobility is good. Since dropping the dosage I’ve not noticed any difference in my condition.
My symptoms are mainly nausea, dizziness, fatigue & brain fog, which I’ve had since taking Pred. I’m convinced these are due to the steroids, as I didn’t have these before the diagnosis. I did have the immobility, pains, blood inflammations and rapid response to Pred.
I recognise the need to not rush tapering and I’m keen to get back to work. I’ve got a decision to make next week on whether I’m able to return or need more time. This also coincides with agreeing with the GP whether to taper to 10mg.
I’d appreciate any thoughts on what else I could do to alleviate the symptoms and the next taper.
Written by
SpaghettiWestern99
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PMR and GCA are significant, systemic diseases. Pred is an excellent anti- inflammatory drug that deals with the worst effects of the inflammation, it does not “cure” the disease that carries on as long as it needs to , sometimes years ( I am in year eight).
You need to accept that you are ill, irrespective of the demands of life. You need to avoid putting pressure on yourself, to return to work or to live life as you used to. You need plenty of rest and to pace your activities, avoid stress and to follow a gentle tapering regime. The aim of your taper is to find the lowest possible dose that relieves at least 70% of your symptoms. Please have a look at FAQs to become really familiar with what you are up against. There are workers in our community and I don’t honestly know how they cope. Sometimes it is needs must I guess. Please put your health and well-being first. X
Thanks SheffieldJane - what I’m not sure of now is which symptoms are PMR and which are steroids?
Before being diagnosed I had limited mobility, pain, night sweats & trouble sleeping. These have all gone with the onset of Pred use. My rationale is I’m left with the side-effects of the steroids! Does this sound silly, am I still in denial about being unwell the impact of PMR?
Not at all silly. It is a conundrum we all have. I was assuming that you are in the early days of PMR and therefore guessing that your fatigue, dizziness and brain fog were more related to the disease. However, those symptoms can also be Pred induced. We can forget how awful the pain and disability of PMR was before we got relief from Pred. I think it’s the brain’s way of protecting itself ( like childbirth). My first flare was an awful shock. See if paracetamol helps, it doesn’t help PMR at all.
Would say that although you may not have them them prior to Pred, many of your symptoms do sound as if they are related to your PMR.... sound typical with an autoimmune illness.
Agree with SheffieldJane returning to work is a big thing, and does require thinking about - and really depends on how stressful and/or physical your work is.
Would suggest if you are thinking about returning to work... then maybe try cutting your 2.5mg tablet in half to get 1.25mg - so you drop from 12.5mg to 11.25 then 10mg rather than one drop straight from 12.5-10mg. From then on, only 1mg a time provided all okay..
Just to endorse DorsetLady’s advice about reducing in two stages. During over seven years with pmr, I adopted the principle of not reducing by more than 10% of the current dose. Countless people on this forum have hit flare problems going down to first 12.5mg from 15mg, or down to 10mg from 12.5mg.
I know guidelines, frequently quoted, suggest the 15 to 12.5 to 10mg taper, but, clearly, it so often doesn’t work, and what does a few weeks matter in the grand scheme of things?
As for going back to work, that would have been a non starter for me in the first few months. Luckily, I had retired by the time I was diagnosed, so it wasn’t an issue. Fatigue would have been the big problem.
Patience is a virtue and PMR go hand in hand I never stopped going to work I suspect because early my symptoms were slight but slowly got worse until I needed crutches to walk needed help from bed dressing myself even brushing my teeth prior to diagnosis by late afternoon I improved well enough to keep working (office work) I pushed my body because my GP thought it was “just a virus” and will pass I believe I caused my full blown PMR symptoms by pushing myself so hard Once diagnosed and put on 60mg prednisone I felt so much better I continued to push myself never missed a day of work unless I had Drs appointments that was over a year ago I realize now how foolish I was not listening to my body as bad as I hurt I feared if I stop pushing if I lay down I will never get up since my latest major flare I am taking time off working 1/2 days I am listening to my body and it has been rewarding me with some “good days” learn from my mistakes ease back into the workplace try 1/2 days or if you feel very well every other day looking back my performance suffered
We started lower not until we hit 60mg did it release its ugly hold I was able to drop 10mg a week until I reached 15mg then the slow taper started I couldn’t get below 12 until methotrexate was started everyone is different not everyone’s body responds to prednisone the same
I’m listening to my body, it’s telling me different things each day.
I’m concerned if I introduce work into the equation too soon I’ll be adding stress before I’m ready. At the same time when I do get a good half day I feel functional and work ready. Problem I don’t know when that is going to happen and @ 52 I’ve got many years left before I can afford to retire
Appreciate at 52 you aren't in a place to retire, so you need to learn to manage your PMR as best you can...it's not always easy but it is doable... and you have to learn to say "No" ..sometimes whether that''s in a working or a social environment.
Just remember PMR doesn't last forever, and males do very often get through it easier than females.. but your workplace does need to assist you, think we mentioned that in one of your earlier posts - so get HR, LM and colleagues on board - that may not be easy for you, but it's a must.
Thanks DorsetLady , this forum has been invaluable to providing information and support. I’d really be lost without it - thank you! I had read these along with the excellent FAQ’s.
I’m getting to that stage where I need to be formulating some medium term plans and like I guess for a lot of people making potential life changing decisions is tough.
I will keep the forum updated with what I agree wit the GP next week
Yes it is difficult - but there is plenty of info out there….and on here… so just ask. Someone will have been through what you are going through… and although circumstances may not be exactly the same, at least they can share experiences.
Luckily there are more options these days depending on your work of course, like working from home, hybrid working etc. You don't have to make big changes just yet, just 'for now' decisions, things may well be very different in say, a year's time, or even 6 months
I was 51 when diagnosed and still working. It was pretty impossible tbh, I was in so much pain and permananetly exhausted. I ended up going self-employed so I could choose when to work and when I needed to rest, but then really struggled to make a living and there were days I'd have to let clients down because I just wasn't fit for work. If you work for a company or organisation talk to HR or Occupational Helath to get them to make reasonable adjustments. PMR is a life-changer, it'd not a case of just take steroids and carry on as before. Also look into things like Access to work who may be able to help with any eqyipment you need at work or travel to work. It will be virtually impossible to get any disability benefits but you might qualify for the Care component of PIP, you'd need advice on that from CAB or similar.
Also start keeping a detailed diary of how your illness affects you on a daily basis. So not just say got up adn got showered, but took ages to get up because was stiff and in pain, needed help getting washed and dressed, too fatigued to go out, couldn't concnetrate in a meeting, feel asleep on busetc etc. Then you can refer to it when needed in discussions with docotrs, HR etc
Have you had a conversation with HR? It is important to keep the lines of communication open. They maybe able to suggest a compromise that eases you gently into work, especially if they are a good employer. Or reasonable adjustments to your job to make it easier - hours, breaks, duties etc. In the meantime don’t try to race off Pred. this would really make life impossible.
I’ve been in regular conversation with work, setting the expectation that this isn’t a short term fix and and return will need to be phased. They are OK with that and happy for me to follow the advice of the GP. To be fair they are being supportive.
Hi, I haven't been able to read all the replies, so I am sorry if I am repeating things others have said. Whether you may or may not be able to work depends on how you feel of course, but also on the type of work you do. I would say that the biggest challence with a deks job is getting into work. Heavy manual jobs would be difficult. As you reduce your steroids the Prednisolone side effects will subside. I found I needed to rest from time to time especially when tapering, which worked in the end as I've done most of my tapering during the pandemic and I was working from home. This made it possible to continue without any interruptions. The other relevant question, especially now as the new strain of Covid is on the rise, is how is the immunosuppression going to affect you. My first year protocol which I started in December 2019 was almost textbook and I have not even caught a cold during that time. In fact, the only illness I had during the last 4 years of Prednisolone was Covid, in June last year (it was mild). This could be luck or I was able to look after myself reasonably well. My PMR symptoms started when I was 52.
In the end, adjusting to living with this condition can be challenging and if you can take time off to rest and work out how to manage the process that sounds like a good idea. Phased return sounds great.
I’m lucky that I’m able to either work from home or in an office and I’m confident work will support a phasing to suit.
I am worried about my resilience, as currently I don’t need to worry about work stress and my body is slowly getting used to this new regime. Introducing a new stress factor too soon maybe detrimental in the long term, but making that decision is tricky. Be interested to know how you decided it was time?
Now I’m diagnosed with PMR I’ll be getting jabbed for Covid / Flu soon, you raise a good point about being @ risk. Not really thought about that.
I never stopped working, but I was lucky in that I was already working part-time (20 hours spread over 4 days) and I worked 2 out of 4 days from home. When the pandemic started, I worked exclusively from home for over a year. This allowed me to have a lot of flexibility during the most difficult time when I was tapering from 8 mg down to 3 mg. I now work 30 hours, also with 2 days from home. I have a lot more energy, of course, my muscles are recovering from the steroids, and I feel I am slowly getting stronger. I was down to 5 mg before the first year of treatment was over, but it took almost 3 more years to stop the steroids completely. On the plus side, I had no flares and I was mostly stable and able to live a relatively normal life. Also, very lucky not to have had to contend with, sometimes horrible, steroid side effects. Once I got down to 10 mg, I only experienced issues when tapering and even then only occasionally. I took my last 0.5 mg tablet on Saturday and I am feeling very tired in the evenings and need to get the required 7 hours of sleep in order to function. But, I expect some issues over the next 3 months and even a year as my adrenals need some time to stabilise. In a way, I feel that this stage is crucial to help my body recover completely, so I am making sure I rest, eat well, and try not to take on too much. Being patient with myself is one of the key lessons I learned.
I never stopped working but the fatigue is real, even now 4 years in and down to 2mg. But I am lucky to work at home and set my own part time hours. A full time job out of the house would not be possible for me. So I am lucky to have the position I have. If your job is flexible that will certainly help!
TBH when the symptoms started I just carried on. It was only when I got the official diagnosis and the steroids I needed to stop and reframe how to get better.
I guess I’m fortunate my employer has been supportive so far
You are doing really well with the bad situation that is PMR/GCA. I think it's likely that the symptoms you describe are mainly pred-related. Also it's likely that you will hit a sweet spot dose of pred at which they resolve. (There may be a less sweet spot later, but that is adrenals and in the future.)
The important thing is that you try and avoid an increase in PMR symtoms at this early stage. As people have said, a 2.5 drop to ten may be too much in one go so best to do it in smaller stages. PMR symptoms tend to arise after ten to 14 days of a taper, so the idea of the monthly reduction is, if they don't resurface, you have two weeks clear before the next taper. Of course, this can and does vary.
Your workplace sounds very reasonable. You will know when you are ready to return. When you do the vital thing is to work sensibly and make sure you get lots of rest. If you are someone who gets stressed because of being overly conscientious (most of us are) it would be a good idea to use the time off to get some stress reduction tools under your belt for when you return.
Tapering from 15 > 12.5 hasn’t been the easiest ride with lots of variations in symptoms. Towards the end of the 3 week period I’ve actually had some good days where I don’t feel nauseous and vaguely normal.
I’ve agreed with the GP to move to 10mg for the next 4 weeks and we’ll see how that goes.
She has advised not to return to work yet, but if I feel OK in 3 weeks I should be clear to start a phased return. Not introducing additional stress and giving yourself time to recover properly was her recommendation (which is also what has been suggested by members of the forum).
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