Hi, I'm new here so please bear with me. I've been diagnosed with polymyalgia at the beginning of July 2017. My GP sent me to local rheum at hospital as she suspected GCA. Luckily this wasn't the case. They put me on 15 mg Pred tapering after 3 weeks then 4 weeks.
The problem is I've never been without pain during all this time. At first the Pred reduced the pain and my CRP went down to twenty seven. It's affecting my life so badly and some days I just want to sit and cry. Some days after about three in the afternoon the pain subsides a bit.
Had a rheumatologist appointment at hospital today but when I got there they told me the clinic had been cancelled and I'd have to wait for another appointment to come in the post.
Went to try and see my doctor but can't get appointment for two weeks. Hoping for telephone consultation in three days time.
Any suggestions very welcome......
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and it is possible you do need more. But you also have to do your bit. All the pred does is manage the inflammation and the underlying autoimmune disorder that makes your immune system unable to recognise your body as self is still active, making your muscles unable to tolerate acute exercise. You have to learn your limits in terms of activity and keep within them, pacing and resting appropriately. Read this, it may help:
You should probably have been at at least 20mg - and long enough for your pain to have stabilised and the blood markers to have returned to normal range and stabilised. If that really was your CRP that is still high.
Does your doctor not have emergency slots? I'd say you qualify.
I had to cut my activities because I'm getting a lot of fatigue so I'm feeling tired and I sleep/rest/meditate quite a bit. I'm unable to walk very far because of the pain in my thighs, buttocks and pelvic area.
I have read that stress can be a major factor and I've had my share over the past 2 years. The last being a double family bereavement where I had to travel to the funerals which meant sitting for about 5 house one way. Then being with family for days and nights - which is normal feel ok about but when you're in pain and fatigued it's very difficult. All very upsetting. But I'm moving forward now and I'm trying to be positive.
To get an emergency appointment you have to stand and wait from 8am ( then it's not guaranteed). This would mean me getting up at least 2 hours before as it takes me so long to do everything. Then I don't know if I could get there. But perhaps I should try.
If you need an emergency appointment it is because you are ILL - so standing and waiting in a queue is hardly reasonable. I would make a complaint to the practice manager.
Hi PMRpro my blood markers have all been 'normal' I know they don't always show raised numbers but I am refusing all the alternative mess the rheumy is offering as their side effects are worse than pred . Also my PMR is not as bad as some people I am on12 1/2 st present and it is holding most of the aches I'm seeing a different rheumy privately on Tues for a second opinion.I will keep you posted!
Can you get advice over the phone from either your doctor's surgery or rheumatology department, to maybe allow you to try an increased dose of pred? I would first try the rheumatologist's secretary, who will know about today's cancelled clinic and 'demand' to speak to someone!
Take care and good luck! It shouldn't be this hard, should it?
Hoping to speak to doctor on phone on Friday. Spoke to the rheumy secretary today and she apologised and said to wait for appointment.
They give you a number to ring to speak to the rheumy nurse but they keep changing the days and/or times they are available and when I have managed to get through in the past it's engaged. They are only available in 2 hour slots about twice a week.
I didn't know if it was this hard for others.
You say you've had PMR for 17 months - have you been in pain for much of this time?
I hope you get some help on Friday - what's wrong with Wednesday or Thursday.......?!
I started on 15mg and it gave me enough relief to function. I read that if we can get 70% relief, that would do, so I think I was happy to feel that, even though I was never fully pain-free. In the early days, the weakness in my muscles was more frustrating than actual pain. Even now, if I do too much, my muscles can be sore for a few days, but only aching - not pain. It lets me know what my limitations are.
I did have a flare this summer, when my PMR morphed into bursitis in both hips and shoulders. I'm sure that was due to my reducing my pred too quickly and has been resolved by increasing from 4mg to 10mg - now on the way down again, even more slowly! A lesson learnt!
Click on my name and see my last 2 posts for a visual display of what happened.
You'll get there, if only 'they' will talk to you and advise you what to do.
From personal experience my guess is that your PMR has never been properly controlled by Pred and you needed at least 20 mgs to deal with the inflammation. Perhaps stay at that dose for as long as 2 months before you even consider reducing your dose. Subsequent reduction should follow the dead slow nearly stop methods that are recommended on these pages and by knowledgeable Rheumatologists. Your clinic being cancelled must have felt like the final straw. Perhaps you are also trying to carry on as normal, that's not possible. Activities have to be curtailed and paced with lots of resting. Are you able to talk to a GP on the telephone ( my practice will do this). Tell the doctor how awful you feel and put the proposal to them and get a prescription. There is no need to suffer this badly. Let us know how you get on footfairy - we all believe in fairies here ( sorry couldn't resist, what a sweet name).
Bless youxxx I'll let you know what happens. Think I'll sleep a bit better tonight knowing there are people out there who understand what I'm going through and can give good advise from their experiences.
Others have given you good advice so I won’t elaborate, just wanted to say you shouldn’t be in that amount of pain, not enough Pred obviously. Plus get a telephone consultation ASAP.
Please keep us informed. And come back at any time.
I was just wondering if you can try to refill your prednisone prescription? Like over the phone or something. Forgive me for my ignorance but I am in the US and I know things are different here. I just was thinking maybe you could call in for a refill and it might work.
From California, US: usually when I need a refill that was not pre-approved, the doctor prefers that the pharmacist call the MD to request a refill -- and its easier for the pharmacy to reach them anyway. And you might be able to speak directly with the pharmacist to state your concerns before he/she calls MD.
I also was given 15mg at the beginning (a year ago), but after a week was still feeling quite a bit of pain. Luckily I could communicate with my rheumi by email and I asked her if I could increase to 20... she said yes, and it worked! I stayed there for about 6 weeks. Now 5.5 with no flares (knock on wood!).
I had hot flushes with the pred, which abated on the lower doses.
The thing that gave me loose stools was a PPI - Lansoprazole, to protect my stomach from the pred! The doctor reduced the dose from 30mg to 15mg and it helped. Recently, I decided to stop it, as I'm using gastro-coated pred. Then I had 2 to 3 weeks of rebound constipation! Back to normal now after pushing fibre and probiotics into my gut!
Yes to the hot flushes. I got dripping sweat at my temples too. Not so much on the lower doses. Glad you got the appointment. If the GP is obviously not very knowledgeable just push gently for a Pred prescription of 20 mgs daily.
Hope you’re feeling better. Health care is different in US. Most important is getting prescription for Pred so you have ammunition to fight the disease then listen to forum doctors...particularly Dorset Lady and PMRpro.
The rheumatology nurse from the hospital just rang. Had a long chat about everything and she said they are not sure it's PMR as I haven't responded to the pred and some symptoms are different to the norm.
From what I gather from posts here my symptoms are the same as others and maybe I haven't been given enough pred. The only thing I haven't seen on here is muscle pain in the ribs - anyone?
Anyway she's trying to get me an urgent appointment with consultant. Waiting for phone call.
I had a very similar start with PMR .I was started on 10 mgs. then 15, I finally got relief at 20mgs. My rheumi thinks my symptoms are more in line with GCA, but my markers went down to normal after being on 20 mgs for 12 weeks approx.
Back from docs. Think the doc only had limited knowledge. Would only give me 15mg per day so I'm hoping that'll help. She wanted to put me on a strong pain relief tablet as well but I'm not good with those. Even cocodamol completely knocks me out. My crp taken last week was 38.
Still waiting re appointment with rheumy as I think they should be able to help more.
Thank you all for sharing your experience and knowledge x
That is urgent - urgent just means sooner than routine which can be 18+ weeks now since the gubmint removed the targets. If you need to be seen quickly the word that must be used is EMERGENCY - combined with phone calls by the GP and you being sent to the hospital with a referral letter in your hand.
Wanted to let you all know that most of my terrible pains have gone except in my buttocks and pelvic areas, but even they are much improved. The side effects of Pred are debilitating on their own! Had to stop working since July and can't imagine starting again.
As I can't see my GP til 6th Nov and rheumy on 6th Dec, can anyone advise about reducing Pred. Been on 15mg for a week now so when and how much should be reduced. I have read on other posts that 10% is a good idea but docs say go from 15 to 12.5. I'm a bit scared to reduce to quickly and get a flare like before.
Don't start to reduce yet anyway - up to 6 weeks is common and at least 4 weeks is sensible.
The 10% rule is sensible - but often people do manage down to 12.5mg OK. So really you can try it and if it fails you can say "it didn't work, can I go slower??
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