My journey with PMR has been eventful. I started off a year ago with severe back pain and investigations found I had a bulging thoracic disc T8/T9, but apparently not anything that needed intervention. I was very tired, working and looking after my 31 year old son who has Autism and Learning difficulties ..it is just the two of us so I’ve always been used to going full pelt and juggling.
I started to get a lot of neck stiffness, very bad shoulder stiffness and pain, spinal pain and bilateral hip pain. As I already have spinal osteoporosis I wondered whether this was all connected.
GP at a loss, bloods etc not revealing much except for some discrepancies in white cell count.
The GP did refer me to a rheumatologist and he thought ‘Suspected PMR’. I was put on oral prednisolone of 15 mg daily, (really did not want to go down that route).
symptoms did not ease that much and a crp blood was very raised however plus Monocytes off the scale.
Since then I have battled on alone really. It’s difficult to see a GP as they are so busy and different ones all seem to have a different perspective. I’ve been waiting for a rheumatology follow up since April and finally have one for November.
The rheumatologist had previously said he thought I might have to go on methotrexate if the prednisolone did not ease the symptoms. I have tried reducing down by1 mg a month but every time I get to 10 mg the symptoms are vile.
I am back there now, not sleeping due to the pain in my shoulders, neck, spine and ribs, unable to do my normal walks (which used to keep me sane) I feel like my shoulders and neck are being pulled apart on movement. I spoke to a specialist nurse and she said to increase the prednisolone to 15mg which I have today.
I would appreciate any advice or help, I feel so very alone and it doesn’t help that the medics seem to differ in their treatment. I’m not sure I can carry on, I’ve gone from managing all to simply trying to get through the day and it terrifies me, I have to be there for my son.
Methotrexate seems a terrifying prospect, but chronic pain every hour of the day is taking its toll.
Apologies for such a negative post. I think you all sound amazing from the posts I have seen!
Written by
August7
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Hi and welcome! It isn't at all a negative post - it is reporting a very negative experience and I think you are being failed badly by the medics.
Pred only works if you are on enough - and MTX really isn't the answer UNTIL things are properly under control with pred, 15mg is the bottom end of the recommended starting dose range which is 12.5 to 25mg, exceptionally 30mg. And you won't be able to reduce the dose if you haven't got things under control to start with. I think you need to try a higher dose - if only to see if enough pred sorts it out better. Once you have done the springcleaning, you can go back to dusting!
It is very poor that you weren't seen sooner to see if the moderate dose of pred had achieved much, Have you seen a doctor since they found the raised monocytes? They ARE a sign of autoimmune disease but not often raised in PMR - more often in lupus, although in some people it can be a response to steroids.
We aren't that amazing and some of us have had a long time to get this thing sorted - and for many, to educate our doctors! Hopefully we can get some ideas about your problems and you can go to a GP and demand something better. Because this isn't just about you, it is about your son too, and the stress of that responsibility is probably not helping the overall picture.
Thank you, I finally feel someone understands. I’ve got to the stage where I feel I can’t face ringing the surgery as my condition just seems negated.
Earlier in the journey when I was having a flare up, a GP told me I must have flu! I had no temp or signs of flu and he auscultated my chest whilst I was wearing a full winter coat over my other clothes …impossible.
Even the nurse today when I read my notes had put that she had advised 15 mg but that was not ideal to go ‘back up’. It’s as if I am making it up, and the pain is so very real as you know.
I imagine I shall have to try and keep a clear head on seeing the rheumatologist as I understand he is doing a trial on methotrexate on patients not responding to prednisolone. Meanwhile the nurse is ringing me next week, I think with the idea of reducing it back down to 12.5 mg.
As I say - only possible once things are under control. Funnily enough, piglette was told by her doctor originally she had a virus - for an awfully long time!! It might be PMR - but there are other things that may be making it worse and the rheumy wants to get his brain in gear.
Hello, welcome to the forum, you have a lot on your plate. I am also a newbie, 7 weeks diagnosed and not long joined the forum but I feel so safe here and so can you. While you wait for others to see your post and welcome you, have a very gentle hug 🫂
Totally agree with PMRpro that you have been badly let down by your medics, and that you probably do need a higher dose to get your PMR under control. You may not have wanted Pred, but that is the only thing that is going to address your problem and give you some quality of life, but it does need to be a high enough dose to do that, too little and it’s a waste of time.
I appreciate it’s difficult especially as you are on your own, and with your son’s issues , but you do need input from your GP. There is no way you should be waiting until November for help.
Do you have anyone that can advocate on you and your son’s behalf.. after all both of your lives are being impacted by the lack of undertaking of your situation.
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