This is the first time I have found the need to write but, have followed lots of advise and been engaged with lots of the posts on here that have supported me to date.
I am 49 and was fit and healthy when I started with chronic bilateral hip pain Nov 2020, I have had hip problems in the past so, thought here we go again.
By Dec 2020, I was hardly able to walk, sit or drive comfortably.
Referred to an Orthopaedic consultant who confirmed Osteoarthritis in both hips and I had cortisone injections for both.
The pain then moved to my shoulder and neck and then my knees. I couldn’t sit, drive, get dressed or do any basic everyday jobs, chronic pain that I have never experienced before and sleepless nights, general feeling of unwell and I thought I was going mad!
Dr in Dec suggested Polymyalgia but my bloods were inconsistent, although everything I had read screamed Polymyalgia to me…so, she ruled it out!
Long story short, lots of scans, tests, a referral to a rheumatologist later and more bloods, symptoms continue to get worse over three months. The rheumatologist said and reported that my symptoms sound like Polymyalgia but wanted to rule everything else out first.
After having to wait for test results/appointments etc I begged my GP for a trial on steroids, which was suggested as an easy fix from the Dr I spoke to in Dec 2020.
I started on 15 mg in Feb 2021, six weeks later my Dr said I needed to start reducing.
I was flying on 15mg but, I didn’t get full relief, about 80%.
I reduced to 12.5mg, then 10mg, 9mg, 8mg each month, still with only 80% relief but, enough that I could start driving, walking and doing a little bit of work.
I should say at this point that I am a single mum of two teenage boys, a three year old Sprocker and I care for my dad with my brother who had a severe stroke three years ago but, is living independently with our support.
I was working full time too….haven’t been able to work full time since getting ill.
I was starting to struggle with side effects from the steroids and getting terrible withdrawal so, started doing Dorset ladies 5 week slow taper from 8mg.
Slow taper helped with withdrawal symptoms and those aches and pains but, I had chronic fatigue from 7-5mg and my mental health has suffered more and more.
In between all this I had a dexa scan which showed Osteopenia so, I had an IV fusion to help and I take the Calcuim D3.
I am menopausal and have been living with anxiety for a number of years, the Polymyalgia and steroids have really impacted my mental health and it’s difficult to know what is causing what some days.
I am obviously keen to reduce the steroids as we all are but, continue to do it slowly.
Finally, I get to 5mg and the fatigue has lifted, and I actually feel pain free!
At 5mg I felt more like myself, physically and mentally, I felt clearer in my head and physically, I finally have some freedom and a shift in my pain relief.
Feeling optimistic, I continue to slow taper from 5-4mg.
By the 4th week (end of Dec) I had some pain in my hips and neck and shoulders and my body felt a bit sore, not unusual for me, by the 5th week my hips, shoulder and neck were aching, tender and sore and my knees were starting to resist, I also get feverish with Polymyalgia, hard to separate from hot flushes sometimes!
By the end of week 5 I knew it was a flare, paracetamol didn’t help…My rheumatologist and Dr had already said, if I should flare to go to the dose you last felt okay at.
I went to 5mg where I had actually felt the best I have along this journey…stayed at 5mg for a couple of days, didn’t make any real difference so, decided to go to 7mg.
Stayed at 7mg for a week, felt quite ill that week but eventually got some relief so, reduced to 6mg for a week, was okay until about the 5th day, an increase in pain, stiffness and again struggling.
The last two days I’ve gone back to 7mg, still have pain.
I have read that you can add 5mg to your dose and reduce to the dose you felt good at after a week, 10 days.
I am really nervous about this after struggling with withdrawal and side effects from Pred particularly when reducing from 7-5mg.
I had reached 5mg and felt the best I have felt since starting the meds etc…I have now done 2 weeks of 7 mg and 6mg, going back to 7mg in the last two days.
My question is…
Do I up my dose significantly then drop back down to the 5mg or is this not possible now.
My Dr has said to go to the next lowest dose possible where I get relief and taper again, exhausting and depressing.
Pred also gives me terrible mood swings and increases my anxiety hence the fear of going too high and getting stuck.
I am at a loss as to which way to go for the best.
Any help, suggestions and support from those that may have experienced similar and are in the know would be much appreciated…I am tempted to give it a blast of 9mg which would be 5mg extra from the 4mg where I got stuck.
Or is it too late to do it that way now?
Many thanks if you got this far in reading this lengthy post 😊
Written by
Rooro
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"…I am tempted to give it a blast of 9mg which would be 5mg extra from the 4mg where I got stuck."
However, I would go to 10mg and then start again (if you can bear to do that) using DSNS or DL's tapering plans.
If you do not fancy that, how about 10 for 5 days then back down to when you last felt well which seems to be 5mg.
One the menopause bit, are you on anything that helps with night sweat and hot flushes. I am on Premarin and have been since I was 32 and am now considerably older.
I noticed you goind in 2021 but could not find the date you were diagnosed and the amount you started on. There is no quick fix, known cause or cure for PMR the Pred is to enable you to live as pain free as possible and the caring responsibilities lead to stress which is difficult to handle. If you were just diganosed in 2021, PMR can and does last for much longer than the text book say ie 2 years. Most people take much longer.
As I did not have PMR, but GCA only, others will be along shortly to help you out. In the meantime please can you add more to your profile. Date Diagnoses, amount started with etc, it does help to answer your questions. Never worry about asking, just ask away, knowledge is power.
Thank you, I have updated my profile now, hopefully that will help. Menopause support is complicated, I have booked a private appointment (even this has a 6 month waiting list) to look at my medical history etc,My mum had breast cancer at 42 and passed away at 47…a lot of my anxieties and particularly health anxieties start from here, more so since becoming a mum myself.
Like jinasc - I'd do 10mg for a week and ONLY if the symptoms are well reduced would I try to go lower. And I wouldn't be in too much hurry to go to 4, I'd stop at 5mg for now and go via 6mg first.
You aren't reducing relentlessly to zero, you are looking for the lowest effective dose and I think on balance that is maybe 5mg for you at present. You might find it a bit hard work dropping straight back to 5 but I would really suggest to enlist some help to reduce your physical load while you do it because that isn;t helping any of it.
You doctor could - and probably should - take your anxiety into account and he could provide some help there. Much of it will be because you are floundering about with reducing and side effects - and once you understand that, the anxiety will probably also improve.
Thank you for your advise. Just so I understand, if I go up to 10mg for a week and symptoms improve significantly, should I drop to 6mg then slow taper to 5mg again.
I really felt my adrenal glands had started to wake up at 5mg after a terrible couple of months at 7mg and 6mg, chronic fatigue.
The Dr has prescribed me some meds for anxiety but, I am a bit reluctant due to more side effects.
I have had horrible side effects and withdrawal from Pred up until 5mg.
I really did feel a new freedom at 5mg, mentally and physically.
Although I appreciate what you are saying about the anxiety and being so indecisive etc…it is definitely adding to the anxiety.
I felt more hesitant following the Drs advise, go up slowly and try and stay on the lowest dose.
Think I was trying to find the middle ground…and it’s not working.
It rarely works going up slowly and you are wasting time too. Getting in there quickly and really hitting it hard and dropping back quickly usually means less pred in the long run - and less in the way of side effects.
You might not need a full week, see how you feel - and I'm suggesting 6mg so you have a bit of a cushion. With a bit of luck you won't have lost your body's adjustment to the lower dose, you haven't been at high enough a dose or for long enough I think
Jinasc and PMRpro are far more expert and knowledgable than me but when you do get back to 6 or 5mg you could try just dropping by half a mg a time (using a tapering plan). That’s what I’m planning to do this time (long story but I got near 7mg last year but ended up back at 10mg)
Don't forget it is easier to do a reduction from a rapid flare protocol increase than the usual steroid reduction if you have only been taking the increased dose for 7-10 days.
When you taper back down on one of these flare treatments , don't jump straight back down from 10mg to 6mg , as this can give you more side effects.
If it is back in control , for example on day 7 , roll back down the mgs like a countdown over a number of days 9, 8, 7.5, 7, 6...
Give yourself as much rest as you can , and delegate more tasks at home to those teenage sons.
Eat light nutrient rich food and get lots of fluids , a multi vitamin and mineral is also beneficial , you need to give your body chance to recover and gain strength after fighting the inflammation and it needs extra fluid and nutrients to do that.
I can understand you need to be careful with the effect that a higher steroid dose has on your mental health , but do try to stay on between 6-5 mg for a month before trying to reduce again. That extra time will let the body get strong enough again to cope with the chemical changes that happen as you taper , even if you go at 0.5mg at a time .
Pacing yourself and trying to reduce the stress will help a great deal with the steroid side effects , all types of pain and the anxiety. Being honest with yourself and others about needing help with day to day physical jobs while you suffer from chronic health issues really does make a difference to the pain and the mental symptoms.
Be willing to say," No", when you need to , especially if your life is packed is important .
Do the things at a gentle pace , and do what you want to do , or need to do , and not what you feel you have to , or you should do , "Me Time " is essential for your recovery. it is actually one of those life balance skills which you want to keep up after the PMR has passed because it is so good for your general health too.
Try Mindfulness techniques that you enjoy like breathing exercises, meditation , reading or a walk and if you don't get enough sleep work on a new sleep routine. This helps to reduce flares and control anxiety.
Don't be afraid to try an anxiety or antidepressant medication. Start on the lowest dose and work up . If it causes side effects you can speak to the GP and find another, on the other hand , if it doesn't cause side effects it could just give you enough added support for you to have control of any anxiety that may be caused by steroid use. It will reduce the physical as well as mental tension in your body and can help reduce stress related pain , which , in turn, can make it easier and quicker for you to taper off the steroid , or reduce to the minimum dose you need.
Oh wow, thank you so much for your advise and support, I feel much more encouraged and confident moving forward now and really like your suggestion of dropping the mgs on a rolling countdown to ease my body into the lower doses (once I have some proper relief of course).
Having felt quite foggy for a couple of weeks I feel like I have a better understanding of what’s happened so to speak, easy to say it’s a flair up but, knowing what to do next without fear or consequences feels more difficult.
Everyone’s advise has been sooo helpful, more so than the Drs who would have had me struggling as I slowly went up a mg at a time, PMR Pro helped me see the positive and sense in short, sharp, blast (hopefully).
I also really appreciate your support and advise around managing my anxiety etc, I have just started some meditation, hypnosis and I am having some one to one therapy to support me.
I am struggling to come to terms with the impact on my life and not being able to do some of the things I use to do and took for granted.
I have a very full and busy life…(teenage boys are a work in progress) and this has forced me to slow down which is still challenging and when I get some relief I find myself making the most of the energy and freedom from pain, almost making up for lost time which I can see is a mistake.
I still have to work although I really haven’t done very much over the last year, I am self employed so I can manage my own time but, I don’t think I can go back to my job as a painter, it’s too physical.
I think putting boundaries around ‘my time’ is something I have always struggled with but, can see the importance of it, now and in the future.
I have increased my dose to 10mg today and will try and have a gentle week and see how it goes.
I can only add by saying that my pmr has gone on for far longer, probably because of trying to reduce too soon and being reluctant to go back up on pred when having a flare. The difference since reducing really slowly and only by half a mg under 10 is pronounced. Mini flares have been tackled quickly and it worked! I used to get stuck at certain dosages, but since learning (I hope) the lesson the hard way I have not got stuck. The disconnect between mind and body takes a while to overcome, but you'll get there.
Thank you, it’s good to hear this, I definitely won’t hesitate if it should happen again…I think it’s a confident and anxiety issue but, I feel very reassured and encouraged by everyone’s advise and support on here today.It’s actually brought a tear to my eye!
I followed similar advice given from DL & PMRpro last year after a flare and I am now feeling good stabilising at 4mg. I wish you well and hopefully the next thread from you will be one of relief..
I’m answering because I am in a similar situation . I read your long post but I don’t have answers . Floundering around myself . Best of luck with what ever u do .
Thank you, it feels difficult to make a plan and move forward when you are feeling so unwell and the pain for me is all consuming, reaching out (not something I do easily) has given me the confidence and understanding to up my steroids to 10mg for now, keeping everything crossed for some proper relief. So thankful to all the support and advise on here 🙏
Hope you find some support here and thank you for sharing.
I really feel for you! Life is tough without all this. I wish I had practical help but unfortunately I’m not educated enough only to say I’m really hoping some skilled on here will help you. Best wishes Rooro. X
Lots of excellent advice here - please follow it and I sincerely hope it sorts everything out for you. Can't add anything else but am thinking about you. Onwards and upwards ....... !! Sue
Thank you Sue, I really appreciate all the kind words of support and advise here. I am hanging in there, desperately hoping to get some relief soon, 🤞🏼
Similar to what Bee posted, when I do a pred “burst”to address a flare I’ve learned two important things.
Don’t wait too long into the flare to do a pred burst. Once a few days have gone by and you think it is not pred withdrawal you’re experiencing. The longer I wait to address the flare, the mores difficult it is to address (and usually involves a higher dose of pred for longer period of time).
When doing a burst I start with 5mg above the dose I flared at and usually take it for 4 days. IF I’m feeling better I begin to drop 1mg a day for the next 5 days until I’m back to my original dose (or 1/2 mg above where I’ve flared).
This has worked for me with the 5 flares I’ve had in the last 2.5 years. 4 of those flares were from attempting to drop from 9mg down to 8.5mg, and once in response to having COVID.
Wishing you all the best in your plan moving forward. With time we get a better understanding of PMR, symptoms, flares and our body.
Thank you for sharing your story and advise around flair ups, this is my first one and it has really caught me by surprise, I felt so good on 5mg!I am definitely learning and won’t be so hesitant should it happen again, I just hope my slight delay in going up by 5mg hasn’t messed things up. Time will tell.
You’re quite welcome. That’s what we are here for.
As someone who has been at 9mg for a few years now, if I ever got to 5mg and felt great, I’d be staying there for awhile given the side effects are reduced at that dose.
Wishing you all the best as you figure it all out!
Thank you, if only we had a crystal ball, I would be so happy to sit at 5mg now should I get there again. I felt my best at 5mg, minimal side effects and very optimistic moving to 4mg so, getting a flair up took me by surprise.Feel more informed and prepared if it should happen again thanks to all the advise and support on here...just need to get this flair up under control.
I just joined this forum - so happy I found it! I am 59 years old and was just recently diagnosed with PMR December 2021. I am by means no expert but have been doing heavy research. my question is, aren't Prednisone withdrawal symptoms only from reducing too quickly? could that have been the issue and if perhaps this time you do it more slowly maybe you don't experience that withdrawal you described. ? just a thought.
Thank you, the links are really useful, they help make sense of it all. It’s a steep learning curve and it’s not always easy to think clearly when in pain as I’m sure everyone can relate to so, the linked advise really helps.
Thank you for your reply, I was doing a slow taper which definitely helped but, I still struggled with chronic fatigue from 7mg -6mg, 6mg-5mg.I now believe that was my adrenals waking up, at 5mg my energy levels were back.
Pred also increases my anxiety and I have terrible mood swings when on higher doses, at my starting dose I was manic, in a good way but, definitely not ideal. Throw in the menopause and it’s quite a cocktail!
I also had withdrawal pain but, it was manageable with paracetamol so, that gave me the confidence to continue.
I felt it was going relatively well until I dropped to 4mg. 😏
This may help - I don't know if anyone has talked about this before.I started on 15mg and managed to get down to 5mg with no real problem. However every time I tried to get down to less by the time I'd reached 3mg the pains came back.
My pharmacist suggested a very slow taper. So I went back to 5mg then after a week I alternated 5 with 4. The a few days of 5,4,4 then 5,4,4,4 then 5,4,4,4,4 the just 4mg for a week or so then start again 4 alternated with 3, then 4, 3,3 then 4,3,3,3 etc. Have a few days on each set before moving on. It is very slow but so far so good. I haven't had any pain at all and am now down to 3 alternated with 2. Might be worth a try.
Oh wow, it is so encouraging to hear your story and I really hope you stay pain free! Fingers crossed!This is the first time I’ve had a flair and it’s really knocked me, partly because I am now starting week 3 and haven’t got it under control yet.
I have increased my dose as suggested to 10mg and hope to get some proper relief soon.
I was doing a slow 5 week taper and as I got to the 4th/5th week I knew something wasn’t right.
The pain increased etc as well as other symptoms, I will definitely consider my options should I get to 5mg.
I was thinking about doing 0.5mg drop, feels along way off atm.
Slow tapering is discussed most days ..and links can be found in FAQs. If you aren’t on here regularly, you may not have seen these- but you seem to be sorted -
Hi RooroReading through your story makes me suspect several nutritional deficiencies, which can occur with long-term medications/ stress/ diet high in grains and sugar.
Adding a strong supplement program will help you cope with getting PMR back in control. B-complex will help many emotional, nervous and immune system problems. See if you can get approved for B12 injections. For menopausal symptoms, magnesium and Vitamin E are needed (natural d-alpha E, not synthetic dl-alpha). For lots of benefits, at least 2000 IU of D3 with breakfast and dinner.
Thank you for your advise, I am taking some supplements already, B complex, D3, starflower/primrose oil, curcumin and K2 but, I will look into the vitamin B12 injection and magnesium… Thank you for your thoughts.
Just wanted to say thank you for starting this thread. I’ve found it very helpful, both because of the advice given and because you’ve related your situation so clearly to life ‘as it is lived’. Very helpful, thank you again x
Thank you and that’s really kind of you to say.I am also happy to hear that it’s been helpful to you.
I read a lot of threads and advise over the last year that I found useful but, sometimes your own personal situation begs a different question. Everyone has been so supportive. Thank you for replying and sharing x
Hi Rooro, I have suffered like you. I have always been an anxious person and looking after a 93 year old mum as well as working took it's toll on me big time. I also started with gastrointestinal problems which my GP thinks was initiated by the pred and/or the lansoprazole. The biggest side effect was my mental health which deteriorated dramatically, I became moody, angry, depressed and everything in between. It got so bad that I developed health anxiety which I can't seem to recover from at the moment. Despite the neck and shoulder pain, my GP and I decided it best to come off the pred and we tapered 1mg every 3 weeks. I have been off the. Now since the beginning of December and I am not yet recovered. My GP says phycological problems can take months to recover from.I have pain and recently developed some eye inflammation but I am NOT taking pred again unless I absolutely gave to....we shall see.
My GI probs resulted in me having numerous tests including a CT virtual colonoscopy all which came back clear, that's how bad the pred has affected me mentally as they have put it down to anxiety state!
Thank you for reading my post. I am so sorry to hear that you too are struggling with health anxiety and mental health..
Both have a huge impact on how we manage day to day, they are the unseen illnesses, debilitating and all consuming as is the pain from Polymyalgia.
When my anxiety is at it’s worst, it is very hard to talk down the gremlins that keep us in a state of panic and feeling overwhelmed.
I’ve just started some hypnotherapy/meditation that talks me through 25 mins of being still and works on the subconscious as well as trying to keep me focused on the ‘here and now’.
I know a lot of my health anxieties are driven from looking back into my past or fearful of the future…it takes time and I am learning to focus more on the the present.
Lots of other interesting links, mindfulness etc…it’s not about zen and zoning out from my understanding, more about making you aware of your thoughts and pulling them back into check when you can.
I also have one to one therapy, having that space and time for me to share and explore thoughts and feelings is really important for me at the moment.
Have you tried any sort of counselling/psycho therapy?
You are making a difficult choice, balancing Pred/pain and mental health.
Finding the balance is not easy and something we are all in one way or another trying to find.
I hope you find some support soon and I really appreciate you sharing your story with me.
Thank you for all your support and advice to date, sadly I am still struggling with pain.
I increased my dose from 7-10mg Saturday, today is day 6 at 10mg.
I am still not getting the relief I hoped for, last night and today I’ve added Naproxen to get a bit more relief.
Am I being too impatient?
I still can’t believe at 5mg I felt the best I have felt in a year and now at 10mg it feels like I am back at the beginning with severe pain in both my hips, glutes, shoulder, neck and upper arm muscle.
I still have a feeling of general unwellness too, mainly feverish and tired.
When I started a year ago on 15mg it did take up to 6 weeks to get some noticeable relief.
It took at least 10 days plus before I felt a shift, not the usual few days I often hear and read about.
One of the things I’ve noticed since this flare up is that every time I increase my dose, I get a couple of days where it feels like it is easing off and then it kicks back in.
So from 4mg-6mg for a week, then 6-7mg for a week and then 7-10mg.
Although, I don’t feel like I’ve really had the relief I would hope for from the increase to 10mg, which really surprises me.
Can anyone relate to this?
I would really appreciate any further advise and support, particularly from those that have read my story to date and were so quick and wonderful in supporting me last week.
I’m reluctant to ask my GP as his advise was to go up 1mg at a time and stay on as low a dose as possible.
Do I wait a bit longer, 10 days at 10mg or do I keep increasing my dose.
This also makes me nervous as I seem to get some relief the first few days of an increase in dose then it reverts back.
Could this be because I was slow with my initial increase?
Sorry, lots of questions…thank you again in advance for all your support to date, I really would be lost without this forum 🙏
I fear your GP's advice to creep up the dose was not helpful - you are always playing catchup. It is far more effective add at least 5mg to the dose where the flare occurred. If you are lucky that will clear out the accumulated inflammation in 7-10 days and you can drop straight back to the dose ABOVE where the flare occurred. That is assuming the flare is due to overshooting the dose you need and not to an increase in disease activity - which does happen. If it is the latter, then all bets are off as to what dose you need.
To me it sounds as if you have been wriggling up the dose while the inflammation has been building up. But I am a bit concerned that this could be a flare of the disease activity since the symptoms seem to be increasing over time.
And when you get those couple of days relief - are you then doing more, trying to catch up on what you haven't done? Pred is not a ticket for return to normal life - management of PMR requires you to do YOUR part, with adjustment of lifestyle and avoidance of activities that aggravate the symptoms.
Do you have a rheumy? Or is there someone in the GP practice who has an interest in PMR/GCA?
Thank you for your prompt reply, I think between my anxiety and the Dr’s advice I have in some ways, as you put it so well been, ‘wriggling up’ the dose and not really hitting it on the head.
I do have a rheumatologist who I am due to see in two weeks.
I am having bloods taken Monday…however, my bloods have always been inconsistent and show some inflammatory markers on one set of tests (not high) and then ‘normal’ in there opinion on another set of tests.
Blood tests are their indicators…
My rheumatologist said to me at my last visit that if I get a flare up I should go to the dose I last felt good at…which was 5mg.
Both Dr and rheumatologist are telling me to keep to as low a dose as possible…I clearly know and understand why but it, doesn’t help me in this situation.
My rheumatologist also suggested another medication if Pred is too difficult for me to tolerant but, it would be more long term?
I have to admit to playing catch up on some jobs when I got a bit of relief…regretfully now.
It is difficult to balance life, family commitments and work with the Polymyalgia and I am still adjusting…at a cost it would seem.
Can I ask what you would suggest as an increase in dose?
Felt great at 5mg…in my third week of increasing from 6, 7, now 10mg.
Today is my 6th day at 10…I know I’m repeating myself but, it helps me (brain fog) to say and write it again.
12.5mg or back to the beginning 15mg.
I know it’s not an easy one to answer, I do believe that both you and Nextoneplease replies and advice sums up the last few weeks for me.
We do all appreciate the pitfalls of coping with family life with PMR. But you are left with a choice - we all are. I was sole carer for my husband and in order for me to do all that needed to be done I had to increase my dose to way above what most people do. Before his death I had had to go to 19mg to function. I'm lucky - I have no identifiable adverse effects from pred, which is just as well after over 12 years on it. Since then, with less that I MUST do and the removed stress I have been able to reduce to 12mg.
But you have to prioritise and seek help where you can - and your main commitment is to YOU, not the rest of your family. Whatever they may think - or you want. If you don't put YOU first, you will become even less well and even less able to do things.
I appreciate your advice and I hear what you are saying, there is a compromise of needs and I still feel like I'm coming to terms with such a drastic change in my life.
I'm sorry to hear about your husband, it can be very difficult to put our own needs first when caring for partners/family.
I think I am still trying to be and do what I did before Polymyalgia to a certain degree. Without sounding dramatic, I am grieving for my old life and feel like I'm trying to get back to it.
I know I need to put myself first 'more' and look after 'me'.
It helps to hear it from those that have experienced it and are still experiencing it.
Not sounding dramatic - it is something we say a lot, it IS a bereavement, you have suddenly lost your old life and it not only needs physical adjustments, it is a massive mental challenge. It isn't helped because we don't LOOK ill, especially with pred-related farmer's wife cheeks. Try breaking a leg and seeing the sympathy you get!!!!
Definitely that, in some ways the mental challenge feels more difficult some days ( prob the days I feel less pain).I have a partner who is desperately trying to slow me down and reassure me, he often uses the same analogy of ‘if you broke a leg you would have to rest up and adjust’ the unseen illnesses are often the more painful, people have no idea what’s going on unless you spell it out, I then feel like a stuck record and very dull and full of moans and groans!
I have increased to 15mg today, hoping to put that fire out as Nextoneplease described.
I think a lot of us have been there. I had a fairly uneventful few years (after I was finally diagnosed in 2015) then last year had a flare which I denied strenuously because, well, it just couldn't be! Eventually I caved and fortunately 10 mg was enough to work. BUT I was impatient and did not stay at the higher dose long enough and attempted to drop too quickly back to where I had been for so long (around 2 mg). This ended up in several months of being a bit of a yo-yo (which is a no-no). Eventually I accepted reality, and with patience and being very slow with taper and not pushing ahead if I feel any return of symptoms, I'm finally beginning a cautious taper into the 2.5 region again. This whole adventure has been going on for year.
The moral of this tale is, take your time, take all the time your PMR wants. In the end you will feel better and probably take less pred than if you try to go too fast. Be kind to yourself.
I’m sorry you’re in so much pain 😟 As you say, it seems quite complicated but it does seem to me that you need a higher dose of pred to really get on top of this inflammation. Think of it as dousing the flames - a smallish increase just discourages the fire a bit, then bang, it’s back to its former fury!! So yes, I’d say you need a bucket of water and the equivalent of this in pred terms is 15mg.
I would also say that your GP should really be aware of this situation, should probably do some tests, and might advise an even higher dose. 25mg would not be unheard of for PMR.
That said, I hope you get some more advice on here soon and that you can get this sorted ASAP.
Thank you for your reply, you’ve described it very well and was thinking around the same idea of…a bucket of water and then sometimes feel like I’m going a bit mad!The pain doesn’t help with cognitive function, I feel so consumed with my body and resisting pain that I can’t always think straight, add on the disappointment of reaching 5mg and finally feeling good and now having to do what feels like a massive increase, feels like a real set back.
I think a bucket of water is the answer…I will add 5mg to get to 15mg, my original starting dose and see what happens, 🤞🏼
Do you think this mean I will have to start all over again and slow taper…?
Thank you for your clear advise, support and kind words, means a lot to me at a time when I feel so low xx
I would defer to PMRpro’s experience on the tapering front - but my understanding is that if 15mg puts out the fire, you could stay there for 7-10 days and then drop straight back to 10mg and start tapering from there. It all depends really on whether this is a flare brought on by tapering too quickly or by doing too much - or whether your PMR underlying inflammation has got worse, in which case you won’t be able to drop quickly. I think only the next couple of weeks will tell. Do bear in mind, though, that even if you had to stay at 15mg, that really isn’t a huge dose when you consider all your responsibilities.
Picking up on PMRpro’s mention of the feeling of loss and bereavement consequent on PMR (and on illness in general)…..gosh, I know that feeling. I pushed myself to my absolute limit when caring for my mum, and literally collapsed as soon as she sadly had to be admitted to a care home. It perhaps sounds like a cliche to say ‘I made myself ill’, but that’s the truth of it. Now, some six years later, I have PMR and GCA and I struggle to cope emotionally with not being able to do as much for my family as I want (now husband, children, grandchildren). I do indeed feel bereaved of my former self. When people say “you must make time and space for yourself”, that almost makes no sense to me as “I” am someone who likes to help and support etc. I’m not very good at self care. It’s just who I am, what can we do about it except adapt as best we can…..
Thank you so much for sharing your story and supporting me, I have increased to 15mg today and keeping everything crossed 🤞🏼
Sorry to hear that you have both PMR and GCA, that must be very difficult to manage and an even bigger adjustment!
I can relate to what you are saying with regards to taking time for yourself etc I have not been very good at self care and creating time for ‘me’ but, I am learning and trying to put some boundaries around my time without the feeling of guilt or shame.
Coming from a close family and working class background, those roots of doing everything yourself, not asking for help and work, work, work, and an ex partner who worked and still does work off shore has meant I have parented solo for years and looking back, over compensated for his absence.
Like you, looking back, I can see how my body finally decided to give in to the growing stresses I have been carrying for years…bizarrely I was really happy, very fit and healthy when PMG struck, which makes me think it is accumulative, years of holding on to stress but, how can we ever know🤷🏻♀️
I guess it’s like the flight attendants demo on take off, put your oxygen mask on first before helping others…?
Thank you again for your reply, virtual hugs and a few tears for past lives, tomorrow is another day!
Thank you Rooro 😊 for your empathetic reply. Work, work, work is it! Or it was, until I retired……which I don’t like at all !
You’re right, we need to put on our own oxygen masks first. And for myself, I need to appreciate some of the time that retirement allows me, and especially now that the pandemic is less dominant, get some quality time. To which end, I have today booked a short break away (in this country, nothing fancy) during the Easter holidays. Fingers crossed for it 🤞
Thanks again, you take care of yourself and I hope the 15mg does the trick xx
I had a lot of trouble adjusting to retirement. I really enjoyed my work (part time in a youth services library) and it was hard to find volunteer activities as fun. Hard to believe I retired at the end of 2014! That is a long time ago.
We retired in the same year! Well, I stopped work to look after my mum, which kind of came to the same thing, but I made no positive retirement plans at all. And then I got ill……🤷♀️Then there were family crises, then the pandemic…. It certainly hasn’t been an easy time for any of us, has it?
I too loved my job - social work in various forms - ironically, latterly running a carers support service. Didn’t take my own advice on self care, did I ?!?😉x
In retrospect it was clear I had PMR while I was still working, Diagnosed the following year. Hubby and I had been planning to build an attachemtn to our home, which we would move into and our daughter would take over the main house, Probably because I was ill, and didn't really know how ill, and it turns out our contractor was too, with a different difficult to diagnose condition, that all fell through. My daughter and partner moved to Ontario and I went on prednisone! Weatherwise that first winter is still referred to as the Winter from Hell because of the ice which nothing seemed to touch and it curtailing ability to get out and about. It was not a good way to start retirement, although yours sounds worse. I'm sure the stress invovled in planning the house, the stress of leaving a job I loved, and a bunch of other sort of niggly things, contributed to developing PMR. One evening I made a list of all the stressful things, counted 16, in my recent life to that date. I made the list in a post on this site, but never actually posted it. I deleted it, and have never tried to recreate it. It was cathartic just seeing it all written out.
Oh Heron 😳 The start of your retirement sounds pretty bad, I have to say. I’ve written stuff down too, not on here but in notebooks that I squirrel away in cupboards - as you say, it’s helpful to see it all written down, but I’m not sure I want others to see it!
Would like to write more now but it’s really late here and I need to start my wind down 🙄 Take care of yourself. Hugs xx
He's doing OK now. Left hospital after a week. Leaky heart valve and (Verkalkung - don't know the English word)!!His BP is all over the place so they are sorting that out. It's hit him rather hard this time and he has slowed down quite a bit. He's sensible though and not over-doing it.
A short break sounds wonderful, even in this country, change of scene and all that! Day 3 of 15mg and some relief at last, just hope it holds AND I cancelled my work day yesterday, first step towards putting my needs and health first instead of pushing through…although I did do my tax return, not sure which is more painful 😀
Have a good weekend and thank you again for your support and advice. Xx
Oh thank you, I have had some amazing advice and support and some lovely messages from people like yourself who send kind thoughts, it all really does help and make a difference.It can feel quite lonely and depressing out there, only those that have lived it can truly relate and understand…even I don’t understand what’s happening to me some days and weeks!
Back up to 15mg for now, hoping it will put that inflammatory fire out!
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