My dear friends, I need your help once again. My much adored husband passed away 7 weeks ago.
Although he had been ill for some months , it was unexpected.
I had been on 4mg Pred and comfortable for some months, so I stayed on that dose. Three weeks ago I woke up aching everywhere ,arms , legs , hip bones etc. So I upped the Pred to 9 mg and stayed there for five days. It actually took 5 days to improve which it did by 90% , just leaving my arthritic shoulder and bad right knee——back to my normal.
I then reduced slowly over 10 days and stopped as advised here , at 4.5 mg ——half a mg above my old dose. I take this in the morning.
I was fine until this morning when I woke up after sleeping well, aching all over, once again pain in both legs ,shoulders, hips etc . I took my usual 4.5. No improvement, so I have just taken a further 2.5 mg.
How should I proceed? I don’t really want to start the whole thing again of up to 9mg etc.
What do you think my dearest friends? xxxxxxx
Written by
Smokygirl
To view profiles and participate in discussions please or .
Thank you so much dear IM. I did it that way because it has always worked well for me before. I think I have done it five times , each time I flared in the five years I have had PMR. Xxx
I'm so sorry to hear about your loss.Grief is a terrible stress and dealing with everything can bring on a flare, grief is like dealing with a sick day , if you are happy on 7.5 mg stay there .
Give yourself time to rest and slowly pace yourself again.
You could speak to the GP , explain everything and ask about staying at the higher dose for a while until you've got further beyond the stress and tension of your bereavement.
You could also try paracetamol, more hydration, simple small meals , relaxation techniques and some very sort strolls while you are on the higher dose to see if these will also be enough to help improve the aches and pains as you taper slowly down again.
Be patient with yourself and take care , hugs , Bee
Ahhh darling Bee! Thank you so much. Actually I do all those well being things already—— I think it was your advice to me some years ago!!
I have no faith in any GPs—— only our Forum ! Yes, I agree , my instinct is to stay on 7 mg for at least 5 days and see how I am. I know I will get the best advice here from my friends & gurus!
How are you Bee! I hope all is well with you! Sending love to you too!
Not great currently, my heart seems to want to put me through a meat grinder just at the wrong point before I'm due for surgery. Got a Holter tomorrow, hoping to speak to the Cardio soon after and organise an Echo and see if another medication can be the solution, it's all trial and error it's just the timing that is a pain. I often wonder what I'd do with my time if I was finally on the right side of healthy!😆😆😆
Take care and private message me if you ever need a chat , hugs , Bee
Commiserations on loss of your husband - and whether it was expected or unexpected it still has the same effect on you, as many of us can testify.
I thinks you need to try the flare protocol again, staying at the increased dose for longer than 5 days - 10-14 days would be much better, and probably at 10mg.. Then drop back in 2 steps, to 8 or 7.5mg for a week, then to 6 or 5.5mg -and stay there for at least a month.
You still have a lot for you and your illness to contend with over the next few months so no rush whatsoever..and please ask for any help you require whether physical or bereavement counselling.
With my best wishes and please remember we are always here 🌸
Thank you so much dear DL. Yes it is so very hard—- but we were so lucky to have 61 happy years together! Thank you also for the prompt and sound advice—- as usual! Indeed, that is the road I shall take if I am still in trouble tomorrow. Although I am tempted to wait two or three days on 7mg first?? Do you think it would matter in the scheme of things?
So sorry to hear that - and as you know, I can imagine what you are going through. And what I say to everyone in the same boat - never underestimate how much effect the emotional aspect of bereavement can have on your immune system. It didn't catch me at the time but 4 months later I absolutely crumpled with a massive and sudden flare. I thought I was "coping" well (how I hate that word) but the PMR had other ideas. I had needed lots more pred while he was ill, I thought now all that stress had gone, I would be able to reduce the dose - but I needed more, not less.
It isn't just a flare from overshooting the dose you need - it is a whole waking up of the underlying autoimmune disorder I'm afraid. You will get back down, but it may not be immediately.
Thank you so much my dear PMRpro. Yes, I remember you telling us how dreadful it was for you at that time.
I nursed him at home with love for 6 months and strangely my body coped admirably when it had to —- and then when it was all over —- I think it has just crumbled.
I shall start the flare protocol again tomorrow and actually, with flu jabs and Covid jabs happening in the next four weeks —- it probably is a really good time to do it!
My dear friend, I have been thinking of you each day since you told me . I can’t give any advice about what to do, the experts have the best plan as always.
Thank you darling girl. It doesn’t seem like five years since we started down this road together. I’m so happy to have you as my friend! One day we shall meet for sure! Sending love xxxxx
I am sad for you that you have lost the physical presence of your life partner. How lovely for him that he was adored by you.
I think that you are doing sensibly and gently in caring for yourself. Do you think particular stress has triggered this flare. I found myself very fragile for quite a while, during acute grief. I would get myself comfortable and rest there for a few weeks. It will be great when we get off altogether but you need to accommodate the sad shock you’ve suffered and rest using your fine tuned intuition to know when to carry on reducing. 🌸
Thank you so much Jane. Actually you may be right—— our only son is having huge problems with his much loved partner of eight years and has moved out. She had an affair. He is very hurt and I am terribly upset for him. This has been huge added stress for me ( and him of course, at the same time as losing his father). You are very astute Jane! Sending love
So sorry for your loss and the added worry about your son. When my lovely husband died 6 years ago I thought I was coping then went to pieces about 6 weeks later when I’d dealt with all the paperwork etc. I’d suggest you follow the flare advice and add 5mg and stay on that for 14 days to get rid of the accumulated inflammation than drop back to 5mg in two stages. Sending a virtual hug x
Thank you so very much for your kind words and good advice.
Yes, the paperwork is a nightmare! Fortunately our son has come up here regularly to deal with it. I started the flare protocol again this morning and shall take it more slowly this time. Sending hugs to you too xxx
I'm so sad to hear about your husband and wish you comfort as you process all of this....and the work it entails. So glad you came to the 'gurus' ~! Thank heaven for the forum whose wise ones offer us such sound advice,
Dear Smokygirl, I can't add much to the wonderful advice you have been given - where would be without this forum? I just wanted to say how very much I feel for you. The old adage "it is better to have loved and lost than never to have loved at all" comes to mind. Be very kind to yourself which includes taking as much pred as you need for the pain you are experiencing. The grief and the emotional pain will be taking its toll on your whole system. Don't underestimate the stress you have been under whilst nursing your husband. It's not the end of the world if you have to go back up for a period of time.
You are very kind, thank you so much. Yes, I am so grateful for the 61 wonderful years we had together—- but you are never ready for it to end…….. sending hugs and love to you too xxx
Hi Smokygirl. So sorry to hear of the loss of your husband, and other woes. As others say here, bereavement can hit later. I, too, thought I was coping well, but 2 weeks on aches and pains have hit with avengeance. Thinking of you 💐
Not sure what to say about the prednisone dosage, but just to say that your husband dying a few weeks ago would be enough to send your body into a tail spin even without PMR. My husband died 25 years ago and I still miss him. I am convinced that the onset of PMR for me happened after a period of extreme stress for a combination of reasons. 7 weeks is no time at all for such a major shock and your body responding to it -- I'd agree that staying at the increased dose for longer, even a few weeks under the circumstance, sounds like a plan. The main thing right now is to take care of yourself in every possible way, and in the long run a few weeks is a short time to stay on a higher dose.
so sorry to hear about your husband, you must be going through a fair bit of trauma and this will impact on pain levels, I can’t help you with the correct dose but want to send you a big hug.💐
Feeling for you at this time and sending hugs and sympathy. I am not in a position to help with your PMR as I have GCA but know from experience what the loss will mean.
Oh my goodness. My heart goes out to you. I know only too well how drastically a bereavement can affect one's mental and physical health. I'm no expert but I'd say be kind to yourself and go slow. Sending you a ton of love and a big hug. I hope you have friends or family to see you through this xxx
I know too well what you are going through. Thankfully you have all these wonderful people to be with you for support. I am so sorry for your loss. Please take care.
I am not going to say sorry for your loss, because that sometimes means that the person saying it is somehow implicated in that loss. The reason people say that is because they don't really know what to say.
However I am going to say that I am sorry to HEAR that your husband has passed away and do know exactly how you are feeling,
I can say this with honesty because my beloved husband of 40 years died suddenly and unexpectedly, three years ago.
I am also on Prednisolone medication for my chest condition, and know that grief and sadness can bring about worsening of your symptoms.
As regards your tapering, have you spoken to your GP?
I sincerely hope you get the help you need, and I know to my detriment that you have to put yourself first in terms of your health.
Thank you so much for your wise words. So many of us on here have experienced this and it really does help to have such amazing support. Sending hugs to you too xxx
Sorry for your loss. I lost my hubby to cancer in 2022. All I can say is hang in there, it does get better gradually but allow yourself the time to grieve. The grief does ease up and your thoughts turn to all the good times you had. We were together 45 years, I was 15 when I met him. I had never been on my own. Lots of good memories.
I needed to take a bit more prednisolone around that time. I think I went from 5mg to 10mg for a couple of weeks. Then reduced slowly again. I am now on 4mg. I have been on Prednisolone since 2016. Stay at a good level for you for a little while. My Rheumy was a great support and said to take the level I needed to cope at that time. He said stress can trigger a PMR flare so to treat myself gently. Good advice xxx🙏🙏🙏🪷🪷🪷❤️❤️❤️
Hi Sandy, your story is very similar to mine! Met hubby at 19 —- even though I was at Uni still lived at home. Went straight from home to him! It is incredibly hard. Yes I’ve started the flare protocol this morning.
I can't advise on correct.dosage but just want to send you my condolences. I do hope you have a sympathetic GP to help you through these sad times. Take care of yourself.
Sending you my deepest sympathy and condolences. I am nursing my husband at home who has terminal bowel cancer. Due to additional problems, I have gone from 4 mg of Pred to 10. I shall start reducing tomorrow. We have been lucky to have had 55 years of marriage, so I can only imagine that it must be like losing half of yourself. Sadly I have that yet to come. I cannot add much more than all of the kindness and out pourings of love expressed by the lovely people on this forum. What would we do without them all and their sage advice. Thinking of you.
Ohhhh …….it is so hard in every way. Savour every minute with him—- even the frustrating moments—- looking back I can smile ( when I’m not crying) because however ill they are, men will be men! Xxxx
Yes, I can't help getting a little tetchy when for the umpteenth time I have been summoned upstairs only to find it is about loosing a pen (in the bed) or a pair of glasses (on the floor). However, I cannot begin to imagine what is like for him.
By the way I am Butterflyfarm not Lavender4 which is my diabetic forum.
If that is also an HU forum then surely it will depend on what name you are logged in as at the time you make a post. However, on searching Lavender4 on the membership list, you only appear as being on the PMRGCAuk forum since 2021 and ThyroidUK with a single post from 8 years ago at the time you joined HU in 2016 under that name. There is no sign at all of a Diabetes forum record. Searching Butterflyfarm, you joined under that name in May 2021 and there are PMRGCAuk posts since then up to now.
Something seems quite strange so maybe you need to contact the HU Support Centre and ask them if they can work out what has happened to mix the two names up,
Probably was the thyroid one. I must sort this out, but just now is not the time! My latest problem was trying to sort out an extra waste bin for clinical waste. Non of the agencies seemed joined up to give one full info on what can be arranged for an elected home death, but I am very grateful for all the help I get. Good old NHS.
If you get any info you are well ahead of me. There was nothing available at all here in the wake of Covid. It wasn't really elected - there was no other option except emergency admission to hospital. Luckily my daughters were finally able to visit post-Covid and were here at the end, one is a nurse and experienced in end-of-life care, the other works in the ED and got a crash course from her sister.
My friend in the southwest got the last month or so of the local home hospice service - her husband died just after the final visit from one of the team. Lack of funding, Do Marie Curie nurses still exist?
They must do, as according to the internet they have 9 hospices in the U.K. We are under a local independent charity hospice called St. Catherines, for the local population where we live, and they have been brilliant organising everything. It must have been a terrible time for you during Covid as everything everywhere broke down totally. I am sorry you had such a traumatic time as I can imagine funeral arrangements were also very difficult. It was also very sad here too with families restricted to small numbers allowed to attend. Around that time I was hospitalised with Ketoacidosis (not warned regarding diabetes and steroids; type 2s don't get test kits here). My husband was recovering from throat cancer. WOW what a s**t show for all of us!!!
We had no funeral and that was the easiest bit of the whole thing. The local funeral service was great, here in a few hours to collect him and they dealt with ALL the paperwork and told me what I had to do. We had a pure cremation with the ashes returned to me - though it wasn't called that here, Had there been a funeral service it would have been in the RC church which we'd never gone to except for a neighbour's funeral and I don't think we'd ever more than said Gruess Gott to the village priest. The girls were here and me but no family would have come even without Covid, not many of them still around anyway, both sides of the family are very small. A funeral with 3 mourners would have been awful - though several who knew us in the village did ask when the funeral would be so maybe there would have been more.
My friend had been so relieved that hospice was available - she was a nurse and had worked there before retiring. And then came the bombshell - closing down and handing back to the GP practice nurses. They were very good but not quite the same. Our community nurses were pretty useless - just couldn't see and admit he was dying, I'd known for months and wanted to know what to expect over time but not even the palliative staff wanted to see it and help me understand. Our own lovely local palliative doctor came into post 11 days before he died - too late for us, we knew her well and that would have made such a difference. All I got from one doctor at the hospital was it was my fault, she'd told me I needed a Badantin, a live-in carer, a couple of times. But you can't have what doesn't exist. There were 700 unoccupied beds in care homes because of Covid and lack of staff and that meant there were hundreds of people already being looked after at home. And you have to provide a room and meals - I have 3 small rooms in the flat, it simply wasn't possible. Not to mention cost as we'd been turned down for attendance allowance. We applied again but they never came to assess him before he died. I did get the full rate for 3 months - but not in my pocket until his estate was wound up, almost a year later!
What you went through was absolutely horrendous. Really unbelievable. What a blessing you had your lovely daughters with you. Sending hugs and love as always xxx
Only had them for 2 weeks though - they came for a week as soon as travel didn't require quarantine, summed up the situation and extended their stay for a week which was enough. They work in the NHS - rarely get more than a week off at a time...
The local hospice I told you about organised everything and I receive attendance allowance of £108.55 per week and a night sitter 3 times a week. No bed in another room, which I also could not provide, but I do have a large sofa and duvet for her to rest on in his room, which they find acceptable. Due to what I told you occurred some weeks ago makes such a difference to my peace of mind. Other nights I sleep in his room to make sure he does not manage to wander out of bed, which was a feat of unbelievable strength of will on his part. I have also been offered 3 days a week for 3 hours at a time to go out, mostly used to see doctors, dentists, opticians and the like, plus shopping., but it saves my sanity. You were extremely unlucky to have gone through your terrible time during Covid and you have probably heard about how many elderly people in England were returned from hospitals back to nursing homes without proper post Covid tests. We are also a very small family unit, being one daughter, one niece and my husband's brother, but we do have a good circle of friends. Xxx from Butterflyfarm
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice if possible please
Should I increase my Pred
GCA worries
Advice needed
Some advice please........
