Sorry about that!
My appointment is at the beginning of November and I am worried I may not reach 6mg! I am on 7mg but with increased pain in arms, shoulders, neck etc.
It is very difficult to 'stand up' to a consultant when I have no medical training!
Thank you so much for reading this and for any advice.
Well if all else fails you could take a leaf out of the politicians’ book and be a little economical with the truth?
It is a pretty poor doctor who can ignore the suffering of a patient, particularly when the endless pursuit of zero will be likely to lead to a flare and a return to the start dose. Are there particular medical reasons for this instruction?
Great advice about being economical with the truth! The medical reasons are that apparently the side effects of Pred reduce below 6mg.
Hi andieone! I know exactly how you feel. The problem with too many consultants is that they may have medical training, but they seem to be incapable of listening! I am sick of being bullied and made to feel a failure because I can't reach some mythical target they have set.
I've had a rotten summer because I've tried to conform (foolishly, perhaps, as I was doing perfectly well on DL's DSNS) to their idea of what dose I should be on; unfortunately, I don't think my PMR can read the guidelines!
Everything was fine until I reached 2 years on Pred., (now coming up to 3 - how very dare I!) and then the disappointment, head-shaking and tutting started. When I've pointed out that the mean duration of PMR is now considered to be just under six years, it is always neatly side-stepped with some non-committal phrase or other.
I have an appointment, shortly, and I know they are going to threaten me with MTX, but I'm not going down that road. Short of actually stopping my Pred.
prescription, I don't think there's too much they can do.
I'm at about the same stage as you, trying to reduce below 6.5, but I am not going to put a timescale on it, especially as I am facing a good deal of stress, family-wise, at the moment.
Remember that we may not be medically trained, but we are intelligent and nobody knows our bodies better than we do! Be brave and stand your ground.
Good luck!
I can tell you that having medical knowledge doesn’t help either. Instead one gets the condescending, “you’ve been doing too much reading and it has made your imagination run away; a little knowledge is a bad thing”. Its probably because I was a nurse and not a peer of theirs. Either that, or they are threatened and the wall goes up which gets in the way of good science and understanding.
I don't want to come across to the consultant as being arrogant or awkward.We can't win!
The best and safest ones have left their ego outside and try to keep learning from everybody. They understand that it is not a black and white dictatorship but a partnership full of grey areas. I understand all these gold standards can get in the way of pragmatism, but I get fed up with being talked to as if I’ve been naughty if I choose to make my own decision, that they can document, in order to live my life that they know sod all about.
Oh snazzy I cannot bear that they treat you like that xxx
I have not been able to find your other posting as yet............but in the meantime, we have till 1 November to get your mojo up and running again. The first thing is get rid of that pain. Try 10mg for two or three days...........then drop 1mg each week till you get back to 7mg. If you don't get down to 6mg, then tell them it is your pain and you were and are suffering. The overall aim with pred is to try and control the pain until PMR (which like other auto-immune illnesses has a mind of its own) decides it is going away................there is no known cause or cure...............why should be suffer unnecessary pain because a medic wants you to come down fast.
You are a perfectly normal capable adult - in fact most of the people who have PMR are. Your medics (all of them) are not infallible. We all come into this world the same way and all go out of it the same way (we stop breathing).
Write down all you want to say, take someone with you, and say it.
If they cannot hack it - then it is their failure not yours. It is your body, your illness and they are supposed to work with you..............not make you feel insecure, bullied or just plain ignorant.
My 'rant' over for today
Speak to your GP to be sure they will provide the required pred and then - be economical with the truth. Is there any chance of a different rheumy? Are you in the UK? Then since the NHS is perfectly capable of cancelling your appointment to suit them - the reverse is also true. And when YOU have to cancel the appointment "for reasons beyond my control" they won't hurry up with a replacement...
At this stage you also have the adrenal function dance to fit in. The fatigue of THAT is enough to slow the reduction down.
Yes I am in the UK in the Greater Manchester area.Don't think there will be a problem with my Pred prescription as my GP is understanding.
Thank you for your advice.
Ah follow this link and on the Home page, you will find a Consultant Rheumatologist who is in your area. He specializes in both GCA & PMR. You can read up about him on the website. pmrgcasupport.co.uk
Oh Andieone, I feel your stress given your difficult situation with your rheumy.
I too can sometimes be a bit intimidated by medical professionals, but since the onset of my PMR symptoms last December, I have had to advocate for myself while navigating these new waters. I (and you) are experts in our own bodies, we know our symptoms and most of us with PMR/GCA have had to deal with pain, stiffness, medication side affects, and sometimes superior doctors/specialists who have absolutely no ability to connect with and support their patients besides spitting out textbook (unrealistic) tapers.
I have only been to three appointments with my rheumy and each one got progressively worse. First she put me on a taper schedule that caused a flare, had to get blood work done and result was elevated CRP, so she put me back up to 15mg. At my last appointment she flat out denied that she did that, saying she wouldn't have upped my pred. I told her to check her notes. (sigh)
Then she asked about my appointment with my (lovely) orthopedic surgeon, and when I shared that I told him I have PMR and my current pred dose she rolled her eyes dramatically, then in a condescending voice said, "Now Leslie, we've talked about this. Your diagnosis of PMR is not confirmed by me. In fact I suspect you have another type of inflammatory arthritis which means if you can't lower your pred on the schedule provided, it means you don't have PMR. Best to consider Methotrexate as a steroid sparing agent to help you get off if you can't" She mentioned Methotrexate at each of the three appointments, even when I had only been on pred for 5 weeks! I told her I refuse to take it. (deeper sigh).
I told her I asked the surgeon if PMR can affect the knees and he said yes, it can present in a number of joints. To this she replied, "He doesn't know what he's talking about and should stick with his own specialization. (laughing) I can say this because my brother is an orthopedic surgeon." How unprofessional! (growing anger)
I told her that I had been reading research about PMR and joined a forum to learn more and challenged her every time she would say "This is not PMR, that is not PMR, etc", and she rolled her eyes again, reminding me she had studied and had experience dealing with such patients, basically dismissing my knowledge and highlighting hers. So I told her that I myself collaborated with researchers and co-authored an article that was published this past July, which seemed to surprise her, but she insisted she was the expert (in her own words). (more frustration and anger)
In all three appointments she mentioned she wanted to drain fluid off of my knee to be analyzed, and she had the MRI of my knee, but hadn't read it in 4 months, so when she did, she said "Oh that knee is a real mess isn't it, I'll send a note to the surgeon to get the fluid." She did not follow up as I saw my surgeon on Friday and he received no such note, neither did he drain any fluid before giving me a Medrol injection in my knee.
I have decided that I am not returning to my Dec. appointment with her. My gp is good and was the person who initially diagnosed me with PMR (he has a colleage that has it), and he can renew prescription for pred as need be (he already gave me 1mg pills so I could taper slower and told me not to even mention it to my rheumy). He is a good listener, and I will ask him for a second opinion from another rheumy. I have reduced my pred by half (from 20 down to 10) in five months (only flare was at beginning following her taper schedule), I've lost 27 pounds, and reduced my blood pressure medication by half. My gp and surgeon recognize that I am a motivated patient doing my best to deal with this condition, and they reinforce my efforts with positive recognition. That goes a long way!
Mikb on this site, who resides in Toronto, Ontario, gave me a link to a website that rates all physicians in Canada, and I've written down the top three rated rheumatologists in Ontario that are within driving distance). I will ask my gp to send a referral to one of them accordingly. (sign of relief!!)
All this to say that no patient should face bullying, confrontation and conflict when under the care of a doctor. It adds stress to our lives, something we should be avoiding if we have PMR/GCA. The healing journey should consist of the patient (who is an expert in their body and symptoms) collaborating with a physician who has expertise and knowledge given their profession. Many on here have given you some practical advice (in much fewer words, sorry for the length of my rant). I took my husband with me to my first appointment and that helped a bit (although he was more of an observer, but his presence made me feel better). I wrote down things as well so I would remember the important points I needed to address. Don't put yourself at risk of a flare trying to live up to their expectations which sound unrealistic. To my knowledge, from what I've read on here, once you get below 10mg (closer to 7), tapers are often slower to aid in the transitionour own adrenal glands kicking in, and with this come fatigue. You are at this stage now, so please be careful and kind to yourself. Sounds like your health care system is different from ours here in Canada, so I hope you can say goodbye to your current rheumy and get some care and supervision perhaps from your gp until you get a referral to a new rheumy. Until then, we are here for you!
Geez.....once again, sorry for the length of my posts. Every year my previous supervisor would encourage brevity, being concise, conveying my thoughts with less words. Guess I still need to work on that!
Please post this as a new thread - it deserves far more reading that it might get here as a reply. If I have learned anything in the last 14 years it is NOT to trust your doctor implicitly. I remained undiagnosed for 5 years because I did - luckily it wasn't cancer causing the symptoms!
We have to take responsibility for our health - before and after becoming ill. It doesn't help when we then have to fight the so-called experts who haven't walked even 10m in our shoes.
" reminding me she had studied and had experience dealing with such patients, basically dismissing my knowledge and highlighting hers" - unfortunately she doesn't seem to be a good learner does she!
Hi there, what a great post. Sounds so familiar! I’ve just changed rheumy to one who I feel listens a bit more and seems to be sympathetic.
I too have had problems with one knee in particular and have been told mono large joint PMR is unusual but she feels it is the PMR causing the swelling. Drained fluid and gave me a steroid injection. That was 5 weeks ago and I can feel it gradually creeping back. What did your doctors say about your knee and what did the MRI show?
I know when I go back early November she might suggest methotrexate which I don’t want to take. Apart from one knee my slow taper to 8 is going pretty well.
I am 2.5 years into this and like others feel pressured to get off steroids!!
She also suggested I took paracetamol which to be honest has helped with knee discomfort! I’m fascinated to know what’s going on in my knee, as my rheumy probably is too but here in UK there never seems to be any overlap with orthopaedics. All I know at present is it’s inflammation. Like lots of bits of me 😂
Has your knee been checked for arthritis? If the paracetamol work it probably is not a symptom of PMR.
I’ve had X-ray suggesting bones and joints ok but unsure how definitive that is. Rheumy is monitoring my knee and will see if fluid and swelling builds up again. What we do then, I don’t know but methotrexate has been mentioned.
Unsure when we decide it’s arthritis as opposed to PMR??
Are they suggesting Methotrexate because they think you may have rheumatoid arthritis or because they are hoping to try and reduce the pred more quickly? If other pain killers are helping your knee, it probably is not caused by the PMR. Knee pain can be improved with exercise, you could probably ask the professionals for suggestions.
I suspect the latter. They’ve not mentioned rheumatoid but just mention an inflammatory arthritis. I’m negative for the rheumatoid factor but not sure if that’s conclusive.
Suspected OA but no signs of it yet so has been eliminated in the meantime.
I do walk daily and live in a hilly area so it’s always a good walk. I do Pilates and yoga weekly and when knees aren’t hurting play golf so I’m very active relatively speaking although used to be more so (as so many of us were!) I’ve not put on much weight so don’t feel knees are down to that, although I recognise any weight loss helps.
I suppose I just want to know what is causing my knees to hurt when the rest of me is doing well on my reduction to 8mg! Always seeking a magical answer. Very reluctant to increase oral dose but unsure how many steroid injections they will give me.
Hi Lochy,
The MRIs of both knees revealed some chronic issues including every type of meniscal tear between the two of them, osteoarthritis is both, worse in right knee where complete degeneration of cartilage occurred resulting in 5cm spot of bone on bone contact. Complete tear of left ACL, scar issue from previous injury, and large bakers cyst behind right knee.
He also referred more to the X-rays that were taken and will get another taken before our next appt to compare to those taken one year ago. A right knee replacement is likely in my future but I am young yet (56) so we will explore injections and arthroscopic surgery first and monitor effects of OA.
My right knee causes me more pain so Ortho surgeon gave me steroid injection last Friday......ahhhh, instant relief. Said it should last a couple months. See him in January, and if injection was successful he would consider arthroscopic surgery on right knee.
He said PMR can present in knees, likely worsened or advanced chronic knee issues over 5 months I was not diagnosed (I did not have hardly any pain in knees prior).
My (former) Rheumy and surgeon got some of the same tests results, but to my knowledge never communicated directly (lucky surgeon). Rather I was the conduit sharing info between them at separate appointments.
My Rheumy said she was going to take fluid to rule out (or in) something other than PMR, but never did. Did your Rheumy send the fluid away for analysis?
Can you get an MRI of your knee? It provides a comprehensive overview of any conditions and is very helpful with diagnosis.
I hope your pain relief from the injection lasts a bit longer, and that you get to the bottom of your knee issues. I believe you can have PMR in knees as that is where it first presented in me overnight.
Keep us up to date with your progress.
Thanks for such detailed reply.
Yes she did send it away and reported that high level of white blood cells present but no infection. Think that means inflammation!
So they reckoned your knee issues started with PMR or PMR made existing knee issues worse?
Perhaps I should request an MRI.
It sounds like you have a good orthopedic surgeon. I'll just mention that I had arthroscopy for "lost" meniscus and acl, and then a year later the operated knee gave out with bone-on-bone-no-ligaments- left OA. The other knee gave out in the same way 2 years later. Both have been replaced. My point being that I did not feel anything in my knees until I collapsed each time and could no longer stand. Possibly masked by pred, although I felt a lot of other pain. I'm puzzled because I had a very eager-to-operate surgeon!!!
Great job standing up to rheumy!
Oh yes, forgot to mention both the Rheumy and surgeon recommended taking Tylenol for knee pain and it helped me a bit with the chronic side of things.
I also go to physio and do e revise to increase range of motion and strengthen quad muscles that help support the knee.
Lastly I continue to lose weight as advised by GP and surgeon (down 27 pounds), and slowly lower pred (10mg).
As the others say just be economical with the truth, unless of course you cannot get enough pred in prescription. Say that you are in a lot of pain too. What an idiot to say that side effects reduce on a lower dose, isn’t that true of pretty well every medicine there is? If they were so worried about side effects why did they give you pred in the first place? As for suggesting boosting it with paracetamol, words fail me.
Everyone is different ,don't make yourself ill to please someone who does not feel what you do .You don't want a flare and they have to believe what you tell them if that's only 1 mg different .Tell them what they want to hear . It's not a huge difference is it .
I agree, thank you.
I'm seeing my Rheumy on the 8th. He wants me to go on MTX again, but I am going to refuse. He does not like me I fear, so he will doubtless be annoyed if I do, but I am reducing quite nicely on my own without MTX, although I've got a bit stuck at 7mg. I won't mention this though as it will give him more ammunition to get me onto MTX. I agree with you Paricia, 'tell them what they want to hear!'
If you are stuck at 7mg it is just as likely to be your adrenals! And there is absolutely no justification at all for telling a patient who has got to a physiological dose (below 8mg) they need to take mtx. You are at a level that your body needs to function - it doesn't care if it is natural cortisol or synthetic pred - and if you take less pred, your body will make more cortisol. Why on earth add in the potential adverse effects of mtx?
Thanks PMRpro, I wish I could tell him that, but I had better not!
Great advice.Thank you.
I agree but we shouldn't have to be deceitful.
OUT OF BREATH CONTINUED
So confusing continued
Continued Weight Liss
Moon face and continued swelling.
