The last 3 nights I have had very disturbed sleep due to a burning feeling and heaviness in my feet and legs could this be due to Pred? Its a new symptom to me. I have GCA and following a recent flare after reducing to 10mg for nearly 2 weeks I was put back up to 12.5 which didn't help. The Rheumy Nurse put me up to 15mg for a week 5 days ago and I was told to then go back to 12.5 until I get to speak to a Doctor towards the end of March. The 15mg doesn't seem to be solving my symptoms either and the discomfort has been in face/temple area but this morning I woke up with discomfort throbbing in what I think is called the occipital area. Im beginning to wonder if I have something else going on. Not sure whether this is typical of a flare.
Burning Feet & Legs/still flare problems - PMRGCAuk
Burning Feet & Legs/still flare problems
That rings a gca warning bell for me. Doesn't sound as though the 15mg is enough for your flare but perhaps you need to ring doc/rheumy nurse asap. I do not have gca so can not comment on whether that is typical of gca flare. Sorry
Sounds as if it is possible you are hatching a flare of the GCA - especially the occipital headache. I would be looking to get advice from the rheumy LONG before the end of March. Go to A&E if necessary.
Totally agree with others, this needs to be checked - soon as possible, not a month's time.
Thanks everyone, Im waiting for a call back from a Rheumy at the hospital. This has been sort of bubbling under the surface for about a month now, its not dreadful but its there and I don't want it to get worse. If I follow last advice they gave me I should be reducing to 12.5 again after tomorrow! Will let you know how I get on in case it helps someone else.
Well the Rheumy phoned me this morning, she spoke to the Consultant and called back to ask me to up steroids to 20mg and stay with that for a month until my appointment with instructions to call them back if 20mg doesn't help. I feel generally unwell and ache quite a bit so I'm hoping for some relief. The subject of MTX "or something else" came up but I explained that I would prefer to take the slower route down from 20mg instead of playing snakes and ladders with my Pred as I am at the moment. I don't wish to add in another drug with horrible side effects, especially an immune suppressant drug at the present time if I don't need it. Would rather take the scenic route than fast track like they are pushing for.
At an online meeting the other night there was a chorus from the patients present that slow and steady is the way to go with any form of PMR and that we think the fast track route for reduction causes more problems than it is worth ...
How do we get the medics to understand that though?
By making a lot of noise about it!! There were at least 4 consultant rheumies there, all heavily involved with research and 3 of them are about to start work on recurrent relapsing PMR - Long PMR. One said, patient input here will be crucial. I've been involved with one of them and her work for 10 years, the other patient research partner from the same group there also happens to be a Long PMR-er and we are both quite prepared to say things emphatically!! To anyone ...
I know others have focused on the possibility of a flare of GCA but I have not got that. Only PMR. But I like you are suffering from burning legs and feet as soon as I lie down. Also keeping me awake. My legs are stiff and painful when I get up and feel like they won’t support me.
Had no joy from my Rhuemy just said lots of people of your age have arthritis in their knees🤪.
So I told my cancer specialist who really listened and said it was not cancer related but wants me to see a vascular consultant.
Appointment for June 3rd!!!
Might be worth you exploring this for your legs. Or should I be thinking more about PMR flare? Good luck with it. Let us know the outcome.
Thanks for replying, you are describing my leg and feet symptoms exactly and I must admit vascular problems had crossed my mind but the Rheumy wasn't interested once I said I didn't have pins and needles. I have a telephone appointment with a Consultant later in March so will mention it again. I have pain/discomfort in my neck, shoulders, arms and wrists and feel like someone is pressing down hard on my shoulders. My thighs feel heavy too, but the Rheumy said this is part of GCA and GCA & PMR symptoms are a crossover but as I can put my arms above my head its not PMR as well. I am also capable of walking quite a few miles with my dog every day which I guess I wouldn't be able to do if it was PMR. Sorry you have to wait until June thats a lot of disturbed nights!
I wish I knew why they think being able to lift your arms means it isn't PMR: the symptom criteria say stiffness in either/or/both hips and shoulder girdle. To tell a patient with GCA who has any PMR symptoms they don't have PMR is crackers ... And some people are able to walk quite a way.
And vasculitis doesn't always present with pins and needles. Your doctor needs to think about the patient in front of him and not a textbook that very rarely represents the patient, not even the average one, never mind outliers!
I have GCA and PMR, initially presented as PMR in legs/ hips only, private Rheumatologist confirmed diagnosis. I have been lucky and have been able to walk up to 3 or 4 km every day. High dose PRED has meant PMR pain has not returned, yet!
keeptalking's post prompts me to ask if this
rarediseases.org/rare-disea...
rings any bells? It can affect other parts ot the body too.
Thank you, I have read through but it doesn't seem likely as I have nothing visual. I did think maybe fluid retention at first because I have fallen off the low carb wagon big time whilst I haven't been so well but its not fluid although I do have that heavy feeling in my legs. Would appreciate it if you read my reply to keep talking if you have a spare moment in case you can make any sense of what is going on.
I read everything ...
I had a few episodes or erythromelalgia - my feet FELT as if they were like footballs and SOOO hot but they looked absolutely normal at the time!
Its so difficult with a phone call. I have suspected PMR because from what I had read here I realised that the high doses of steroid I started on would have masked symptoms. In the very beginning I had all the aches and pains including left hip but that was put down to pneumonia. But, I don't seem to be suffering as badly as others on the forum and can get out of bed easily in the morning and that sort of thing so felt I was a bit of a fraud asking. Plus the doctor that called me this time wasn't really 'on the ball'
Should have realised you were dedicated enough to read everything 😀
Once I started on pred I was able to get out of bed absolutely normally. If you are in the lucky group for whom the antiinflammatory effect of pred lasts the full 24 hours that should be the case as long as you are on enough pred - the inflammatory substances are shed in the body about 4-4.30am and start to create inflammation. The longer it is left to get on with it, the more inflammation is created, the worse the symptoms become and the longer it takes for symptom relief with the morning dose of pred. But if the antiinflammatory effect is still active at 4am, the symptoms won't have resurfaced and you can move easily.
The form of pred I take is designed to be taken before bed and be effective at 4am - and it is brilliant! You can get the same effect using the gastroresistant form of pred by taking it before bed - it is working by early morning.
Thanks for pointing me in this new direction. It really does ring a few bells. Especially given my CLL and has made me think I might need to think past my PMR.
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