I’ve been on 15mgs prednisone since 6th October for suspected PMR - I generally feel well and I’m happy to be mobile and relatively pain free. In my happy head I was looking forward to being advised to taper nice and slowly (as members of this site often suggest) and hopefully get to a point of either a very low maintenance dose or in total remission.
However, I saw a consultant rheumatologist on Wednesday (first meeting)who has said I must come off prednisone within 4 weeks (drop to 10mgs for 2weeks, drop to 5mgs for another two, then off completely) so that I can be seen in her clinic in January for her to examine me fully to make proper diagnosis - it seems that my symptoms fit with PMR and/or RA (as I have had pain in my hands and feet) It seems she would also like to do a scan and X-rays.
I’m a bit scared at the thought of being in pain again as before taking these steroids I really wasn’t mobile i..e. couldn’t drive, dress myself, shower, sleep , get up and down stairs etc.
Any advice would be welcome .......
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Feelingpoorly
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How kind - that'll be a joyful xmas won't it!!!! It isn't that unusual - GP makes a diagnosis and the consultant isn't convinced. I had pain in hands and feet - NOT RA! I'd be very unhappy but not really sure what you can do.
Thank you for responding - I’m not sure what advice I was expecting really - I guess I just wanted to share to see if others had a similar experience - it can feel a bit lonely on this journey can’t it ? I am certainly very grateful for this community and I’m learning a lot from other contributors.
Once you have been with us for a few months you will realise that it isn't really lonely - frustrating when doctors don't put their brains in gear about how disabling PMR is and what their orders may lead to. But the chances are you will find at least a few others who have been through the same thing,
The experts will be along soon but I must say that you've now been on steroids for almost 3months, and that seems far too quick to stop them and also seems quite irresponsible, so please don't do anything until you've listened to the very reliable and trustworthy information you'll be offered here, and if nothing else, you'll accumulate the right questions to arm yourself with should you wish to contest your rheumatologists advice!
Thank you for responding, I did think I might ask the consultant if she would support a slower reduction so I could hopefully be more comfortable ahead of tests and her examination but not sure of the overall benefit....it might be better to just bite the bullet get a diagnosis and just get on with the treatment and on with life as best I can.
Hi,As PMRpro says not that unusual....but not particularly nice for you, but as you say, needs must sometimes. I doubt if Rheumy will change her mind, so best of luck.and keep us informed please.
Oh ok, so your Christmas is expendable then after a year like this. If you feel strongly, how does postponing the appointment seem? Perhaps go to the GP saying that you are worried about the idea of being in pain or withdrawal over Christmas. Also, I wouldn’t want the risk of adrenal crisis over the Christmas and New Year period when hospitals are likely to be pushed with Covid and only an out of hours service to get advice from. Could they reassure you about how that might be managed at home if you don’t know if you’ve got withdrawal or adrenal problems?
Hmm... you raise some interesting points and ideally It certainly would be good to celebrate Christmas pain free..... but......I would also like to have a proper treatment plan in place so I’m open to being flexible if I have to.No advice was given by the consultant - when I gently questioned the value of the advice she was kind but very firm that it was her professional advice and it was the best opportunity for her to give a proper diagnosis and I totally understand the clinical need for this action...... it’s just, there is a real person behind her clinical decision - I just felt a bit lost in the dialogue. Part of me thinks I just need to man up but being dependant on my husband for everything is tricky ground for me as I tend to be fiercely independent.
I think I might approach my GP to see I’d she would support me going slower and delaying my tests etc she might speak to the consultant to explain?
Perhaps if you talk it over with the GP with a view to going through with it, but having them hear your concerns. Perhaps if they can give you some guidance on what to do if you do get some trouble so you feel there is some sort of plan if you need it.
Oh I love your idea! Made me laugh out loud. On a serious note I think you are right I need to find my voice and be my own advocate in this. I’m day 2 of 10mgs and pain is returning x will wait a few more days but definitely will speak to GP on Monday - thank you for responding
That happened to me, I’d had 40mgm daily to treat a chest infection which wiped out all the pain instantly. Gp wanted me without pred for a week, to get accurate blood results. Agony but different to you in that there wasn’t a risk of adrenal crisis. Will she be available to look after you over the Xmas holidays??
There was no mention of adrenal crisis - I am only aware of this through this site and your comment. I will try to speak to my GP on Monday and add this to my list of concerns - thank you.
Oh dear! That sounds brutal. I thought RA could be diagnosed by and differentiated from PMR with a blood test. Prior to this forum I would have just done as I was told and been astonished at feeling rotten. Now I think I would argue the toss.
hello, I feel so desperately sorry for what you are being put through. I was bounced around undiagnosed in agony for two years until I was crippled in bed . all the symptoms of PMR. Finally spent some of my pension and went private. Bloods came back normal but 20% of us do, the consultant said it would be cruel to not put me on pred so he did and two days later miracle cure I was skipping around my garden! Still lots bumpy bits on this journey but heading in the right direction. Its a good idea to keep a daily diary of your symptoms as you taper off, and I actually got my hubby to video my getting out of bed, negotiating the stairs, trying to brush my hair and teeth, I could not even grip and left a cocktail stick on my worst days.... Showing my consultant these video clips actually showed him the degradation that was my life, before which I was skiing, horse riding working as a german translator at Porsche in Stuttgart, badminton, tennis, squash, swimming, cycling, dog walking, singing in a choir to raise money for cancer research, kitten rescue for cats protection , cycling to hospital as a volunteer to help feed the patients..... reduced by PMR to a crippled little old lady in constant agony dependant on my husband and house bound... So maybe keep that diary, video your downward condition as you reduce pred, and maybe consider a private second opinion? you really must get an emergency phone number from that consultant, she cant just throw you into this situation and then abandon you over the holidays in the middle of a pandemic! I will say little prayer for you if I may... thinking of you, Polly
Oh thank you so much for sharing this which I can totally relate to ! I must admit I shed a tear whilst reading your journey and I also was reduced to a a shadow of my previous self and left as a crippled invalid until the GP prescribed prednisone. I certainly don’t relish the idea of going back to that pain even for a second.Your suggestion is a very good one - I will keep a video diary of symptoms and I humbly and very gratefully welcome your prayer. Thank you so much again,
You'll be alright my dear, we're a pair of tough ol' boots and together we will drop kick this disease into the stratosphere! good luck with the video and it will be great to look back at to see how far you've come when you put this nightmare far behind you!. . I'm going to watch your posts with hope and interest and you have a lot of people on here rooting for you. Good luck, best wishes and remember you are not alone on this journey, we're all coming with you. x polly.
Unless you have underlying other health issues I’m not sure why you have been referred to rheumatologist, in the UK NICE recommend that this is a GP managed condition, so I would first question your GP as to why you needed to see one and depending on the answer ask to be managed by them.
Thank you - I’m not sure why I’ve been referred I don’t have any underlying medical issues. From your comments I’m not sure why rheumatologist would be interested in seeing me other than she said as my hands and feet were involved she wanted to check for RA but I can see from this site that many PMR suffers have had problems with hands and feet - I will add this to my list of concerns when speaking to GP .Thanks again .
Oh no, another Rheumy dragon! That sounds irresponsible to me, telling you to reduce suddenly like that. Apart from the pain aspect and not being able to function, what about the adrenal problems from sudden lack of cortisol? And with Covid and Xmas making it difficult to get appointments if you have an emergency.... As Snazzy suggested you could postpone your appointment, but definitely speak to your Gp about your concerns. Best of luck.
Thank you - I will speak to GP and feel I have enough information now to ask her advice about support and maybe delaying consultants deadline if I need to.
I had a rheumatologist that suspected RA. Blood test before prednisone was negative and also negative at Mayo Clinic while on 15mg of prednisone so the doctors confirmed I had PMR and not RA. Do they not do the blood test for RA in England?
Hi thanks for responding - My blood test was negative for rheumatoid factor but as inflammation markers showed high (I think it’s the CPR levels but not exactly sure) and because my hands and feet were involved it seems she wants to check for RA. I really don’t think I have RA mainly because my recovery upon taking my first dose of prednisone was around 4 hours - it really was dramatic and an almost total decrease in symptoms and pain and I could stand upright for the first time in 9weeks!The message coming across from everyone here (and I really appreciate it) is that I need to start asking more questions of the medical teams (consultants and GP) and have a better understanding of my illness and be a true partner in my treatment and recovery. This is definitely my way forward.
Am going to be very blunt here. Would consider finding another rheumie or have GP continue to treat. Really not certain how being off Pred will help the rheumie to diagnose RA vs PMR especially if your initial symptoms have been well recorded. Best of luck!
Thank you I appreciate the straight talking - I’m starting to think that there is little value in seeing the consultant now that I am better informed- I will discuss this with my GP hopefully on Monday.Many thanks again.
Even the anti-CCP test is not conclusive - it can also be negative in sero-negative RA. When it is positive it can be an indicator of the future course of the RA or even that someone will develop RA when they do not currently have any evidence of it.
Just to stick my oar in have you actually had a blood test looking for RA at all? Your GP can order this. As PMRpro said it's not definitive but it would be worth doing. My understanding is that for an RA blood test it doesn't matter if you are taking steroids. I only ask this as I recently had a series of blood tests to check for RA factor among other things.
I had x-rays, MRI and dexa scans while I was taking 15mg+ of Pred. My ESR and CRP inflammation markers have always been on the high side and do reflect my physical symptoms so that at least is something to go on.
My GP is great and if I haven't been able to follow my Rheumatologist instructions has always been a great support. I am lucky in that after 4 years we all work together to manage my conditions. I am not afraid to tell it like it is, I am good at being my own advocate and this is something I have had to learn how to do this.
My Consultant has been doing telephone consultations since March. He said last month that he thinks he will still be doing them until the Spring. He didn't think face to face would resume until then. Plus every appointment I have had has been changed so I wonder if your Rheumy is being over optimistic about a face to face in January.
I hope you are able to talk things over with your GP and come up with a plan that keeps you mobile and capable of carrying out the normal activities of daily living xxx
Thank you for sharing your road to recovery. It really helps to hear your experiences. I have had a blood test for RA factor which was negative. I totally agree with you I need to speak up more and be a true partner in my illness and ongoing treatment and recovery. I’m confident that my GP surgery will at least listen and offer support I think it’s true to say that I haven’t asked or questioned anything about my treatment for PMR to date - I’ve just been pleased to be mobile and pain free.My GP practice is usually very good at so I will try to speak to them on Monday and arrange a plan that is flexible and achievable etc.
My GP diagnosed my PMR, then I was referred to a (horrible) rheumatologist. She didn’t demand I get off pred to confirm diagnosis, but she did insist I follow a textbook taper (like ALL of her patients), which caused me to flare as it was too swift. Then she accused me of putting up my dose on my own, when indeed she did bloodwork when I flared and instructed me to up my dose accordingly. Over 3 appointments she continually threatened methotrexate, insisted I MAY have something else, however RA tests came back negative, and she slammed my orthopaedic surgeon for saying PMR can affect the knees. Totally unprofessional! So I stopped seeing her despite her personal call to me to apologize.
Can you ask to meet with a different rheumy? One that doesn’t require you to swiftly get off pred prior to seeing you? Or delay the appointment so you at least have a decent holiday season? You could cancel and just ask your GP to oversee your care (like I did). This was the best decision for me as my GP is informed, supportive and patient. We work as a team tackling my PMR....I’m the expert in my body/symptoms...he’s got the science and knowledge and I get bloodwork monthly to help me manage my condition and inform me while I taper (as my ESR and CRP fluctuate when I taper too fast or flare).
It is very frustrating to read about specialists who come up with these protocols that disregard the quality of their patient’s lives. You must advocate for your health, and sometimes that means standing your ground and saying “no”. I’d be asking for rationale for their requests. I certainly did not have to stop pred for a rheumy to assess me!
Thank you so much for responding - I find your personal experience very helpful (thank you for sharing) - I have been chatting all day with my family updating them on the information and advice I have received and I am leaning towards your path of bypassing the rheumatologist and staying with my GP for ongoing care and treatment as I am sure they will be supportive toward patient lead treatment.Thank you again.
Hi there. Unfortunately I'm currently tapering off fairly quickly like you for the second time to try and get a final diagnosis. It's not pleasant and I can really sympathise.
If you have to you have to. Try and organise help around you, don't soldier on and if you can arrange the review appointment to suit any dates better then try and do that.
Also don't taper beyond the point where you can't cope at all - did they give you a helpline number where you can discuss problems? Use it and be clear when you've had enough.
Thank you for responding and for your kind words of support - I really appreciate it. I have had an amazing response today which has helped me enormously and helped to clarify my thinking. I will certainly be more attentive to my feelings and I won’t go beyond a point where I feel desperate - life really is too short. It’s strange but when I wrote my original post I didn’t think I had much of a choice but now I feel I have a choice over everything - just need to tap into some confidence!I was given a direct number to the rheumatology department but she said that it wasn’t covered 24hrs and if I left a message they would call back when they can !
"I was given a direct number to the rheumatology department but she said that it wasn’t covered 24hrs and if I left a message they would call back when they can !"
Be warned - that MAY be days rather than hours. Don't rely on them in an emergency.
You always have a choice and I'm glad you know this. This illness can be exhausting at times so make sure you do things when ready and not always by the hospital's agenda/timescales. Obviously you need to follow their medical advice but there's usually some leeway 🙂
Hi, I can only imagine how you must be feeling as the thought of having, deliberately, to go back to where I was before Pred, would fill me with horror. I cannot really add to the contents, and advice you have already had. My PMR has always been managed from my surgery and no one there has ever suggested or mentioned the Rheumy word. I talk to the doc roughly monthly and she is very happy to let me self manage with her oversight. Blood tests etc no problem and I get those monthly ish. I keep an ongoing spreadsheet with planned/taken dosages, daily blood pressure, and weekly weight and blood sugar levels etc , which I send to her when I need a new prescription. She knows all about this site and is fully supportive and always ends our conversations, with "if I am in doubt or worried about anything to ring at any time". I think I am very lucky. I can only suggest, as the others have done, that you ring the docs and try and get back under their care. Best of luck and really hope you do not have to do as the Rheumy has suggested.
Thank you so much for your reply - and for sharing your thoughts and experience. I really like the idea of a spreadsheet with all info (I currently use a notebook but have scribblings all over, so even I’m confused!) I would very much like some control over ongoing treatment and I will be speaking to my GP to see if she would support me In this option. Thanks again.
Hi again, if you think it will help I am happy to send you a copy of the one I use, which you can use as is or modify for your own use. Message me with your email if you think that t is a possible idea.
That is so kind of you Thank you 😊 I mentioned it to my daughter saying what a great idea it was and she’s already prepared one for me ! Oh the benefit of being young with nimble fingers! Everything is done in a jiffy! hahaha.Thank you again - hope you and your loved ones have a wonderful Christmas and let’s welcome 2021 with hope that our world will see peace
What is this doctor looking for with her scans and X-rays? That's not the way to diagnose PMR. I was diagnosed by doing a trial of 15 mg prednisone. It worked in about 20 minutes--no more pain! I hadn't had any sign in my blood tests for CRP or ESR. Scans and X-rays could help diagnose RA, but there's no reason to stop prednisone to check for these tests. They are looking for joint deterioration. Please ask your doctor about her reasoning.
The trial of 15mg pred is not failproof - it is just another brick in the wall of diagnosis. Other disorders will also respond to pred if they are causing inflammation. Certain scans ARE the best way to diagnose PMR, PET-CT for example.Pretty impressive if you responded in 20 mins, especially if it was prednisone since it not only has to be absorbed in the stomach but also processed by the liver to become the active substance, prednisolone.
It took me four months to get a diagnosis. A lot of tests were done, but no type of scan. This is the first I have heard about PET-CT scans being the best way to diagnose PMR, even though I have been reading this site for a couple of years. It seems like most people get diagnosed through a trial of prednisone. That's what happened with me. When I finally got to see a rheumatologist, she did not dispute the diagnosis or suggest any further tests. Yeah, I don't know why I responded so quickly to prednisone.
Thank you for sharing - well done on having such a great early experience - I’m not knowledgable on these things so can’t add anything further but I am also questioning the tests versus withdrawing completely from prednisone so will speak to my GP.Thanks again
PET-CT is not universally available and it is also expensive - the evidence for its use is also fairly recent. But 4 months isn't bad - compared with my 5+ years!!
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