Have just had my much awaited for appointment...well, we did not agree at all...Feeling ill, with blurred vision and very drained, practically house bound to cut a long story short...I had in the meantime split mt my dose since last week. She told me I MUST get off these steroids, because three years is far too long, I went up to 15mg xmas gone, because of the blurred vision, she now says I must come down 1mg per month, so I suggested when I get to 10mg, that I do it slower....no way, (but I am!) she says the report which I quoted was rubbish, about less relapses....I have had a blood test, and I`m to have another if I get a flare, but whatever happens, I must come off them. Because of having Fibromyalgia as well (20years) and not being able to tolerate any bisphohonates (?) bone thickeners as I call them, I`m to have a yearly injection, I would welcome any comments from anyone who has had this....All I can say is she would not budge from what she believed, and certainly wouldn`t listen to me. She ended by saying dosn`t worry, you`ll be off these awful steroids soon!....( I hope so one day, my way, it will be......SLOWLY)
Poor Linda, regarding your Bisphosphonates, I took them [Alendronic Acid] for about a year but they caused me so much pain, I stopped them. Have you had a DXA scan? That surely, should be your first port of call. I was on steroids for 3 years and my Dermatologist wanted me off them too. I took the last one last October. I was on Methotrexate, as a steroid sparing drug but I don't think you benefit from it with PMR. I stopped taking that after 18 months, again because of bone/joint pain. I had a DXA scan last November but the results are a secret!
I really dislike doctors who don't listen. It wastes your time and wastes their time and alienates you, the patient.
Can you see anyone else?
Hi§ Linda, I am so sorry to hear of your experience with Rheumy. My first appt. with a Rheumy was Friday 27th March and he prescribed A Acid. I asked him about a Dexa Scan and he said "Yes further down the line". He gave me a letter for by gp. I made appt with her and seen her a week later. I told her I would not be taking the A.Acid and I will take full responsibility for making that decision. She also couldn't read his writing re: pred, she said she would wait until she received a report from him.
Rheumy said he would see me in 8 weeks time. I will deal with that situation as and when it arises. I will be doing it MY WAY not anyone elses. Good luck on your journey. All the best. Pat
I too couldn't stand alendronic acid and soon stopped them. With regard to steroids, stick in there whatever your rheumatologist says. Doctors ALWAYS want to get you off them IMMEDIATELY, but you will know what is right for you and reduction MUST be very gradual.
Oh dear linda, you are to have another blood test should you have a flare?! She quite clearly does not grasp that by reducing slowly, it's precisely that that you are lessening the chances of occurring. Also does she not understand that if you have a flare you will have to up your prednisolone so where's the sence in attempting to reduce you quickly in order to get you off them quicker when the end result could be that you could end up having to up your dose because of a flare and therefore you will actually be on them for much longer.
i'm afraid you may have to be as stubborn as she is. I don't know if you have PMR or GCA or both but if you only have PMR you do not have to be under a rheumatologist and so if you trust your GP you could request that they handle your recovery plan.
don't forget there's lots of lies that you can say in order to prolong your period on each dose, there's colds, coughs, sore throats, upset tummies, bereavement, stress from events. I'm sorry but I would have no qualms about lying in order to get my own way. Deceitful? Not in my book, drs are not gods and after all she is treating you how she wants to treat you and not how you want to be treated. She is not even willing to compromise so stuff her, drs need to work with their patients not dictate or enforce a certain treatment plan when in fact there are recognised treatment plans written by clinicians who have taken a special interest in this condition. Personally I think her attitude is disrespectful to both you and the clinicians who made the effort to study this illness with more commitment than she is. Stay firm. All the best, christina
I'm just imagining the confrontation with your rheumy - must have been an interesting conversation, wish I was a fly on the wall! I would stick to your guns Linda and sit down with your GP and work out a plan that you are 'happy' with. I'm sure your GP wouldn't want you to reduce so quickly either. At the end of the day it's your body and you know whats not working and what needs doing - or have I just got a good GP?
Best of luck, looks like you need it!
Oh dear Linda, not easy when you can't get a rheumy to work with you rather than against you. Is there not another rheumy in your area who you could see for a second opinion? You do need to be under a good rheumy if after 3 years you are still unable to reduce successfully below 15mg.
I believe the yearly injection is still a bisphosphonate - has she given you the name? Meanwhile, I assume you are taking a calcium supplement, and have had a Vit D blood test to check for any possible deficiency. Also, have your iron levels been checked for any signs of anaemia which could lead to you feeling so "drained".
If you have no symptoms of GCA, then the blurred vision is probably being caused by the steroids.
Do try and get referred for a second opinion.
Do you need a GP to work out your plan? If you've been on steroids for 3 years I'm sure you know yourself what would be a suitable plan. I rather envy those of you who talk of "my GP"! My practice is one of those so huge you never see the same GP twice, and if you happen to see one you like and trust and ask to see them again, if you're lucky you'll be given an appointment several weeks ahead, but more normally you find that they've left the practice or are on maternity/paternity leave, or on a sabbatical!
One good thing about my practice however is that none of the doctors has tried to get me to make a rapid reduction of steroids. (I am currently on 25pd and find it difficult to reduce - I have both PMR and GCA). They seem happy enough to let me choose how I manage the illnesses. Of couse (being cynical) they may well think she's almost 80 and not much longer for this world anyway so it doesn't much matter what she does!. I am not being critical of such an approach; it means they trust me not to do anything stupid and allows me to work out a plan that suits me without having a doctor hovering over me and nagging me! I do sympathise greatly with you in having to fight your medical consultants. PMR and GCA are horrendous enough without having to fight them.
Linda. I'm sorry your rheumy appointment went so badly.
I have my appointment on Thursday and I know he is very keen to get me to a much lower dose asap and has mentioned probably starting methotrexate as well. I've been on 40mg Pred since Friday due to flare up and its only today I've felt able to move off the sofa for brief periods.
Hi, Linda: What an infuriating experience.
Did you give your rheumatologist a copy of the articles? It might be harder for her to dismiss them out of hand if she sees that they are written by specialists for doctors, rather than just giving her your summary of the results.
In regard to the annual IV infusion to protect against osteoporosis, I did this when I faced being on a relatively high dose of pred. In the US it is called Reclast. However, I already HAD osteoporosis. For me, I decided it made sense. I did not have any noticeable reaction to the infusion. It certainly makes sense to have a bone density scan before you start this; if it is OK now, you can monitor over time and see whether protecting your bone density is needed.
Does this doctor offer an urgent, compelling reason to get off the prednisone? We’d all like to got off the stuff, but not if it is serving a purpose. I don’t know what your symptoms and side effects are, so I don’t know whether her advice is outrageous, but she does not seem to be open to information you provide or sensitive to how YOU are doing, rather than expecting you to meet her expectations.
I recently expressed concern (in an email) to my GP about having to go back up to 25 mg following a PMR flare after traveling. He replied, “Every individual is different with pmr. People speak about dosing in ‘averages’. We must treat the patient.” It is a mystery to me why some doctors do not follow this pretty obvious philosophy!
I hope you can work things out with your GP or with another doctor and follow a reasonable course that reduces the steroid (a good thing) but does not lead to flares (a really bad thing!)
I hope you have a more positive response than I did, but go armed with your questions..It`s ok to lower quicker when the higher dose is for a very short time (a week perhaps) but it`s been written on here that after that never more thaan 10%, which for me is sometimes too much. We are all different, but like your Rheumy, mine said yesterday that maybe if I relapse she will try me on something else....well, if Methotrexate is mentioned to me, she can go and whistle (that`s putting it politely!) have seen what it has done to my sister (with OA) and would rather suffer the pain!... I am so intolerable of medication.... but we are all different....
Good luck on Thursday...keep me posted....Thanks for your reply..
I attended a talk this morning ar the Surrey Support Group, given by Professor Dasgupta of Southend University Hospital. He is also President of PMRGCA UK and a real authority on PMR and FAX and seems to care deeply about the patients' s voices.
I asked him afterwards about his opinion of my rheumy wanting to try me on methotrexate. He was totally for it and said he supported that and that it was absolutely the right decision in my case, having been on Preds fir over 5 years.
I know we are all different and each situation is different, but I'm relieved to hear his view, as an authority I trust. I'm sorry your sister has suffered because of methotrexate.
I am now willing to give it a go and hope I don't have to eat my words down the line!
Blasted autocorrect! GCA, not fax!
I'm afraid to say I do wish that man would get his brain in gear - he has signed his name to a paper that says MTX does not have a place in reducing pred and there are many rheumies outside the UK who are totally convinced, and have been for a long time, that it has not got a place in GCA at all. You have been on pred for 5 years for PMR, now you have GCA. That is a different kettle of fish IMHO.
However - I would say try it - but do not accept feeling worse rather than better just to be taking MTX if it isn't working to reduce the pred. That just puts 2 lots of side effects onto the list.
Time for a different rheumatologist who isn't so full of themselves. Any doctor who won't listen to and work with the patient isn't worth your time.
And oh dear - I'm obviously going to self-combust. i've been on pred nearly 6 years now. Not likely to stop any time soon as far as I can see.
He has only been known to be very good....how lucky to be to attend that.
Go for it I would with mxt....in my case the Fibromyalgia gives me lots of problems....I can just about take one Paracetamol for pain without side affects for the pain......Good luck.....
Eileen, I will try methotrexate and see how I go. If it doesn't work out, I will say so. I'm a bit desperate to get meds right, like we all are, and I will give it a go. Who knows, I may be saying I hate it in a few weeks time.
He was fantastic. Very concerned about how WE feel, rather than how GPS and they'd feel. His whole ethos was about the patient.
I did ask my doctor if I could see someone else, but she said if you`ve already been seen by one, you`ll probably be sent back to her....I`ll have to find out how to change toanother one! I have asked on another post, how to find out about the injection she`s insisting I have for osteopenia, I want to make that decision my self....she wouldn`t allow me to "wait and see" well I`m going to decide! I must say when I left her room, and being told off for being on steroids for three years, I felt like I was leaving rehab!
Is a single private consultation an option? Am I remembering correctly - you are in Devon? I have yet to "meet" anyone with good experiences there.