I know I haven't posted much but with mum with cancer and husband with vascular dementia and alzheimers don't seem to have the time.
I struggled getting to 1mg foolishly I know and probably to quick.
I have struggled with both hips and leg pain, shoulder pain, my hands feel stiff and sore especially thumbs and right index finger and feel generally unwell.
I upped my prednisolone to 3mg two days ago and I also take gabapentin which has also been increased, I take 1600mg daily and codeine when needed.
My question is do you think it's a flare with polymyalgia or arthritis. I know you can't diagnose. Do you think I should have increased my Prednisolone to a higher dose than 3mg.
Any ideas please.
xxx
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dillydally1
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HiVery difficult for you ....personally would go for PMR, although as some of us know OA does creep back in a low doses.
Maybe try 5mg for at least a week then drop back down to 2.5mg or 3mg - and stay there for a good while.
As quoted on here a lot recently Prof Dasgupta said he keeps some of his patients on 2.5mg for up to a year. You have a lot going on, so you need a dose that helps you....
Hi, many thanks for your reply. Yes I am definitely going to up my dose. The pain in my hips, legs and shoulder's is really bad at night, I have been given codeine but to be honest it doesn't help much so I rarely take it. xxx
If it’s PMR then codeine won’t touch it - plus it has other side effects which make you feel out of sorts - if you’re anything like me!
If your pain is bad at night, it might be worth splitting your dose, usual recommendation is approx. 2/3rd am, 1/3 evening.
With all you’ve got going on, you need good sleep. Even from when the kids were babies I’ve never been able to function if I don’t have my 8 hours!
Just get yourself as good as you can, with whatever dose is required, and TBH anything below 5mg is probably doing you a lot more good than harm.....despite what some doctors might think.
Yes codeine doesn't help, I think sometimes I just take it in the hope my pain will ease. I know now with all the good advise it's the prednisolone is what I need xxxx
I am so sorry that you are under such relentless on-going stress. The trouble with being in these insoluble situations with PMR is that the stress feeds the disease. Personally I would be inclined to increase my dose to at least 5 mgs to see if it enabled me to feel stronger. It was the magic dose for you 5 months ago. Have you had any diagnostic tests for arthritis, such as X Rays? It would be useful to understand where the pains are coming from and to differentiate between PMR and arthritis or even other causes. Is there any practical assistance that you can access, with your mum and your husband.?The most healing thing of all would be to reduce the pressure you are under.
Do you hurry off Pred because of the dreaded weight gain? I see that you have expressed great concern about this in the past. If this is the issue, perhaps your doctor could offer some help. I know from personal experience that the low carb, low sugar diet is hard to stick to, especially in the winter.
Hi, thanks for your reply and knowing my past history. Got really good care in for mum and she can go into the hospice when needed. She actually was admitted to the hospice before christmas for end of life care then to everyone's surprise she rallied round and came home. She is 90 years old and has lung cancer that has spread to her liver and bones. Mum doesn't live near me about 30 miles away, sadly I don't drive. Also with covid times it is hard to visit her. So it's really hard not seeing her. My husband Raymond is not too bad at the moment but it has hit us both hard, especially my husband.Yes I do worry about the weight gain and also my dad and grandad had diabetes so I worry about that. I want to be healthy for when my husband really needs me.
Remember a low carb diet helps both your concerns - many don't gain weight on pred or even lose weight and it also reduces the risk of developing steroid-induced diabetes.
I notice that Prince Charles was allowed to see his dad. I would say that your need to see your mum is of equal priority. I expect you push, I would. I am sorry that Raymond and you have this massive challenge every day. I looked after my mum who had frontal lobe dementia for 7 years. So I do know what a bewildering, sad and sometimes anxiety provoking experience it can be. With little unexpected rewards here and there. This rotten pandemic makes everything so much harder too. I am sure PMRPro is right about 10 mgs, she’s always right. She also knows what it’s like to care for a loved one, on your own, when you’re not well. I hope it makes you feel top dollar as my Australian loved ones might say. Pop in now and then and let us know how you are doing. 🌷
will do, yes Prince Charles did visit his dad. To me the main reason I don't go is to keep mum safe. I did visit her when she was in the hospice and will definitely not hesitate if her condition get's worse. she has care four times a day and someone that sleeps overnight. has well as hospice at home visits and my sister lives in the same town as mum.My husband and myself sing hymns in the evening with her then we yodel for some reason, (poor neighbours) xxx
Has it helped? And frankly - with all that on your plate, even if you need more to feel better, you deserve it. Stress and PMR don't mix at all.
If it were me I'd try 10mg for a few days to see if that makes a significant difference - and work from there You might only need 4 or 5mg so you could then drop to 5mg straight off before tapering to find the lowest that really works but if it makes life a bit easier I wouldn't worry about it - I don't, I take what I need to function and be pain-free. And my rheumy and the rheumy nurses agree. Being a sole carer is hard work and stressful - you don't need any symptoms making it harder
Hi, No the 3mg isn't helping at all. I thought about upping to 10mg and I will do that starting to-morrow. How long do you think I should take 10mg for. Then when I drop to 5mg do I start tapering slowly from there. Thank you for your help xx
How long? Don't know, depends on how long it will take to help the symptoms, if it does. Which is why I'm saying to go that high straight off. You can drop back to 5mg after 7-10 days at 10mg. But if it does work you need long enough to be comfortable first. Then you need to stay at 5mg for long enough to be sure it is still enough.
I am so sorry you have such a lot on your plate at the moment.
I agree with PMRpro, assume PMR and increase your dose significantly, not least because I've recently had to bite the bullet and go for the 10 mg a day. I'm trying 8.5 at the moment, but it's been nearly a month and now I know it's not going to be a quick drop back down to the 2-ish level I was at for literally years. On the other hand I feel so much better, even my mental outlook and energy level have improved and it's such a relief to move relatively comfortably. Like you I have the complication of osteoarthritis and blamed a lot of my pain on that, but in the end it really has been the PMR and, within a couple of days at 10 mg, pain I was certain (for months) was referred from my arthritic neck virtually vanished!
glad you are feeling better with your pain. looking forward to being that way. yes I'm sure you feel better mentally pain wears you down. hope the pred keeps working for you xxx
Believe me it was a really hard decision going to a dose which was higher than I'd been since early days in 2015, but I'm glad I did. Fiddling around at 3 or thereabouts just wasn't cutting it although in the past that's helped with what I now know were not the "real thing" as flares go!
yes it is hard when we are considering upping pred, sometimes it makes you feel like you are going backwards but really reducing our pain is the most important, why suffer when there is an answer right in front of us. xxxx
I think a lot of it is the fact that some doctors have such a negative view of Pred....so it makes the patient very reticent to increase - even when we know it’s the right thing to do.
Yes I totally agree. It always makes me feel guilty and a bit of a failure if I consider upping my pred The doctor's are forever pushing you to reduce xx
Yes it’s the “failure” label that’s the most distressingEven those doctors that should know better, expect patients to be able to follow the guidelines to the letter - some can, but an awful lot cannot. At least Dr Sarah Mackie acknowledged that in her recent webinar.
Hi there, I'm not going to try add any advice to the medical side as people far more qualified and experienced than me have have already done that. I will just reiterate though PMRpro's last comments "That's why we are here - there is someone around day and night to listen to a wail. We might not necessarily be able to help - but we can listen" and provide whatever help we can. You have an awful lot going on and hopefully at least your own physical pain can be sorted.
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