hi I just don't know what to do for the best been on prednisolone for 10 mts up till last September then I finished them my rhumatolagis said I would be tapered off by July but I kept taking 1 mg but pain got out of control so contacted doc he's put me back on 5 mg ,but the pain in my hip shoulders and neck so painful ,I'm taking parecetomal and the odd ibroufen which I'm not supposed to take with steroids and blood pressure , don't know if I should ring docs again probably will only be a phone call or go on a higher dose ,my hubby has been diagnosed with incurable lung cancer and my son's been having tests doesn't look good for him ,I spent most of Wednesday crying my husband and done to much the day before so was sleeping most of day,I'm having trouble with eyes and my mouth so dry most of time it's like I'm having a bit of a panic attack get in a shop and have to get , just wish I could have a one to one with my doctor but half the time it's a doctor on the phone I don't even know I feel like I'm moaning all the time but just need to talk to someone
polymalgia reumatica : hi I just don't know what... - PMRGCAuk
polymalgia reumatica
Sorry to hear this, and whichever Rheumy said you'd be off Pred in such a short time has no idea about PMR....
..and to be honest sounds as if you need considerably more than 5mg to get things back under control. You do need to talk properly with GP and would suggest you need to be on at 7.5mg probably 10mg to get inflammation levels down to a manageable level.
Your hubby's & son's situation are obviously causing you a lot of stress, and that will be making your PMR (which is still very active) worse.
Whilst you are waiting for a sensible answer from GP's do you have enough Pred to up it yourself...but you do need an urgent appointment... if you cannot get one today/tomorrow then try ringing NHS 111 after GP surgery hours this evening...
🌺
thank you for your advice it's nice to know someone understands what I'm going through ,yes I've plenty of meds so going to increase from tomorrow and ring doc and tell them I want a one to one when I'm on the phone I usually forget half of what I want to say thank you again take
Actually you can take extra today - and see if that helps rest of day....
and just make a few bullet points before you ring doctor - and note down what his answers are beside each one...
I am sorry you are having such a challenging time. Looks as though you will be needing to keep yourself as well as possible, so perhaps trying to get a f2f with your dr would help to start with so that you can explain the various pressures you are under as well as your physical health. If you have the e -consult facility with your practice, that may help get a decent response!
I am assuming you have pmr? If so, then to have reduced the pred so quickly may be a large part of the problem. Going on a higher dose is no bad thing if it helps get the inflammation under control, and if the pains are down to pmr, then you wont need/much less likely to need the paracetamol and iboprufen.
Others will be along soon but it seemed a quick response might help. Organisations like MacMillan Nurses can provide listening ears, but you need your own health being in as good a place as possible, too.
I can't imagine what you are dealing with right now. Even had you had still been at an appropriate pred dose, the present extra stresses you're under would likely mean you'd need a bit more just to cope. Write down everything you need to bring up at your appointment, whether it's a much hoped for f2f or another phone call. List items with the most important at the top to be brought up first. Don't try to lead up to the thing which worries you most. Doctors find that very often the key thing they need to know in order to treat a patient the best way is discovered in the final minute of an appointment as the person is getting up to leave and says, "by the way ...."! (I confess to behaving that way myself. However, yesterday I accompanied my husband into an appointment for the very first time. Ahead of time we discussed what he was going to talk about and I was very pleased, and surprised, that he actually discarded the stated reason for the visit - a condition that has been around for years - and went right to what he really needed to talk about - possible long covid. The results from this appointment were very good, especially as I was there to emphasize things hubby tended to skate over, and mention a couple of important symptoms he didn't.) What is the one thing you REALLY need help with at the moment? Is it the pain? Or is it dealing with all the pressure? And treating the PMR flaring will be one thing to help with that, but there are additional things the doctor may be able to help with if they are fully aware of all the tough things happening right now. Just a suggestion. Hugs.
thank you for your advice I hope your hubby soon well yes men seam to just dismiss things when they talk to the doctor ,the nurse rang this morning and before I put him on I told her how he's struggling a lot and he usually just tells her he's ok , going to ring doctors in morning for myself thank you take care
Hello Keemo.
I totally agree with DorsetLady's comments and advice and have every sympathy with what you are having to deal with right now.
I can understand that you may not have the mental energy to insist on an urgent appointment with your GP but it is in your own interests to make this big effort. If the receptionist is unhelpful please ask to speak to the practice manager saying that you are mentally and physically not able to deal with your own condition and those of your family. The same must be told to the call handler if /when you call 111 if you don't get a satisfactory response from your surgery.
It's easy to forget to mention all that is worrying you when you speak on the phone-I've done the same and have kicked myself afterwards- so write down all you want to say before your appointment and tick off each point as you make it.
Please let us know how you get on and please come back here if you want to ask anything at all. We are here to listen and to assure you that someone will always respond. 💐
thank you so much I really appreciate your advice and everyone on here take care
This is not a medical comment but please remember that, if you just need to talk moan, let emotions out or anything else, you can ring the Samaritans and have an empathetic ear to listen to you. I wish you all the very best and do look after yourself(and yes I do volunteer for the Samaritans)
Big hugs. Even without a totally lunatic taper that was never going to work - with your husband's diagnosis you are likely to need more pred for a couple of reasons.
I don't think it matters it may be a doctor you don't know - often a new doctor sees things that the regular one may not. Locums often diagnose PMR in someone who has had symptoms for ages.
PMR lasts as long as it wants to - and fewer than 1 in 5 get off pred in a year, never mind 6 months or so. Only half of patients are off pred in 6 YEARS. It is a chronic illness, not something you give a short course of pred for and then taper off now it is cured.
DL has offered suggestions. Can you remember what dose you were last pain-free at? Or at least, the same as you were with the starting dose? You will need at least that and you may need more at first to get you stable again. And as she says - the stress will make t worse I was above 15mg when my husband was terminally ill just to keep me functional to care for him.
Do the paracetamol and ibuprofen help at all? That is unusual in PMR though not unknown.
hi I carnt actually rember what dose I was on first month I was on 15 mg for two weeks then 10 mg for next two weeks so was around 7 mgs I think about Xmas , paracetamol help a bit but takes a good two hrs or more to take affect ibroufen works quicker ,I know I'm battling with weight put on over a stone so that's not helping , definitely ringing doctor in morning and telling receptionist I need a one to one ,my hubby asleep again he's still insisting we taking two teenage grandchildren away on Sunday he really does push his self ,the eldest his 17 she does everything for him puts mobility scooter in and out the car for me ,it's the pain and tiredness all the time that gets to me and worrying about him all the time we've been married 57 years carnt imagine my life with out him I've just got this sickening feeling all the time ,it's so comforting knowing I can tell people how I'm feeling without upsetting my family
It sound as if you have been totally mismanaged IF this really is PMR - that really isn't the way to deal with it. You need 15mg for at least 3 weeks until the symptoms are well managed and then you taper SLOWLY - 3 weeks at 12.5mg, then 10mg if you can manage it, Then it is 1mg a month after 10mg until you find the dose where the pain comes back - and then you go back to the previous dose where you were OK.
But it is really unusual for paracetamol to make much difference - could it be osteoarthritis causing the pain. I think you need to see a doctor face to face and discuss it all, including your husband's illness, I know exactly where you are coming from - my husband died this time last year after nearly 2 years really unwell all through Covid. You will get there - but don't be afraid to ask for help and tell the doctors about ALL the problems. If there is help available - take advantage of any offers.
I was wondering about sjogrens with the siccasymptoms.....or is that the pred?
Dryness is often a feature of autoimmune disorders - then it is called sicca syndrome, True Sjoegrens has a positive antibody test.
Pred can also have an effect - but since PMR and pred often go together it is complicated.
Awe my heart goes out to you❤️ You're under a lot of stress which can cause a relapse I hear you with the on phone with reumy.I haven't seen mine since covid.Dont ever feel bad venting on this site.The ppl are wonderful and caring here.Hugs to u and your family.
My GP diagnosed me with PMR but after scouring this website I discovered that I may have Palindromic Rheumatism instead. Similar symptoms, my consultant wasn't even aware of it!!!
So sorry to hear you are not well and with all your problems I am not surprised you are in the right place for good advice,better than any doctor believe me.
Keep nagging for a one to one app with your doctor.
Take care of yourself 🙏🌼
thank you
Please contact your GP or go private if you can - Thealoz eye drops may help dry eyes - look after yourself so you can look after family - all the best
ile try the eye drops thank
you’re having a very tough time and my words may sound harsh but in order to help your husband you must help yourself first. I hope you have at least spoken to a GP by now? Call a help line to let it all out too Samaritans are amazing. I wish you luck to find your inner strength to do what has to be done to get through this. Hug.
thanks I will talk to someone it helps me a lot to know that people on here understand what it's like
It sounds like you're going through an awful time. I hope you soon have a glimmer of hope.
Sorry about your troubles plus PMR. You need to see a doctor NOW.
i got in the same state as you , in the end went around my doctors and said i not moving until someone looks at me, my hands were full of liquid and couldn't move them, so i ment it if i had to stay there alnight i would have, so go around your doctors and insist you see someone, good luck, xxx
I am very sorry to hear that you are suffering pain and stress. Hopefully if you asked your doctor if you can increase the steroid dose to reduce the pain this would help. Good luck and a big virtual hug.
thank you x yes I'm increasing my steroids
I hope you will get relief from increasing your steroids. Are there sympathetic friends or other members of the family you could talk to about your troubles ? Sometimes one is hesitant to do this, but it's often etter to talk. Otherwise some of the other organizations mentioned here, Macmillans or the Samaritans have caring people on line you can talk to, who could also offer practical advice as well, as you seem to have quite heavy responsibilities at the moment. Good luck and a virtual hug 😊
What a dreadful time for you. Your doctor does not know what he’s talking about, could you see another one? I think the least you should be taking is ten mg and then do a very slow taper as advised on this forum. Sending love light and healing to you and your family xx
yes going to increase them myself so hopefully will start to feel better , thank
I'm so sorry you are having to deal with all this. I had problems seeing my GP so in the end went round there and told the Receptionists (very nicely) that I was not moving until my GP (or indeed any GP) saw me face to face. I had an appointment that same afternoon and my problem was dealt with. I know it's difficult but you can find the strength honestly. Good Luck.
I was given some information from PALS (Patient Liaison Services) at my local hospital, I was told that if you present yourself at your doctors surgery and have a difficult time with a receptionist, you need to say that your mental health is failing due to your physical health, apparently, they have to get a GP to see you, I have not tried this myself-YET- but believe me I have come close as I have been at my wits end some days.
i rang this morning the receptionist said my doctor was only doing clinic today couldn't get me in with another doctor only thing she could offer was a phone call from a locum Dr ,I couldn't stop crying on the phone told her I needed to see someone,told her I was going away Sunday to Monday so she said ring Monday and get your own Dr to talk to you I said that's ok but I won't be able to get a prescription if I need one ,she said that's no problem just give us the address which chemist you want it sending to ,I said that's no good we staying in travel lodge on a round about not near a town ,in the end I said forget it Ile sort myself out ,I've calmed down a lot now probably increase my meds myself ,if I get anxious while I'm away I've got some dizapam left from when my daughter in law died last January only gave me a few and I only took about 3 or 4 didn't want to depend on them
Oh I feel for you. What an awful situation you are in. You most certainly need to up your pred. When I had my second flair a couple of years ago the locum at the surgery put me on 30mg for 5 days then rapid drop to 15mg. Too high I think but did the trick instantly. Try to talk to a Doctor ASAP. I wish you the best.
I very much feel for you, you are being placed in an invidious position both by our alleged "Health Service" and difficult life events. I have learnt from this page that stress can have a negative impact on this and other associated conditions and this seems a factor for you. I had a frank discussion with my Leason nurse who lacks the imperiousness of some of the medical side I wrestle with about reducing Prednisolone against life quality. I suffer Osteoradionecrosis in my right jaw which when reducing Prednisolone flares up, now down to 4mg the inevitable has happened and I have been awake with pain every day into the early hours, and I mean at times wall climbingly bad. I cannot eat because I cannot open my jaw properly and any chewing action irritates the inflammation so much I just sit there still as I can, but on the Ophthalmologist goes "Reduce" the Prednisolone I want you on a lower dose of Hydrocortisone or some scary pronouncement like last time that it is wrecking my body. Well as I pointed out not having it at a higher dose is wrecking my life on a daily basis so what life? Just watching the clock till I can take more painkillers that barely make a difference. So despite strenuous protestations I up the Prednisolone myself because they won't use some imagination and sit in my shoes till 5 a.m. in the morning moaning in pain, take all my meds and the now self-increased Prednisolone hoping it will gain me some respite, some sleep. I now have an infection in the lower molar so am taking antibiotics after seeing Maxo-facial who should be my lead clinicians not an Ophthalmologist given my original issue GCA is well controlled but in the NHS this kind of rational care direction is somewhat sparse and endless resources wasted. The Prednisolone is now starting to wrestle this back down whist the antibiotics begin to do their work and once I feel some improvement, I will reduce the Prednisolone down myself when life stops being a living misery, It's unfortunate and I haven't even bothered to tell them as I feel it is a waste of time dealing with Vulcans.
o I'm so sorry for you the pain must be unbearable at times and sitting up till early hrs is no joke ,hope the prednisolone does help you with the pain ,you are in a far worse state than me I can put up with my pain and panicky feelings I get but sitting up in the night with pain in your jaw and hardly dare eat thinking is it ever going to stop hurting you are a very brave lady sending you lots of hugs and hope the antibiotics make you feel better
Take heart from this everyone on this site, Keemo, Everyone is so supportive and helpful. You're not on your own, and we all understand and sympathise, and some of us can offer practical ideas too. I know where I'll be coming if my situation gets worse.
Good luck with the GP tomorrow. Make sure you insist on an urgent appointment. Hugs.
Keemo, so sorry for all your troubles. You couldn’t be on a better cite for helpful information. I pray you feel better soon.
Hi Keemo, I'm so sorry to hear about what you're going through. I'm glad to see that a lot of people on here have messaged with good advice and support.
Yes, I think you need more pred if you're in pain - it's no good taking paracetamol and ibuprofen. Take the advice of the experts on here about the dose.
I'm sure you'll feel better once you feel in control of your pain.
All the best....
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