Thank you everyone for your replies and support on getting kicked out of the practice. Hopefully my GP will be Ok, and I can find a better doctor. Rheumatologists. are scare around here.
Has anyone been on 40 mg for 3 months and has it totally messed you up? He scared me about what I’ve done to myself by refusing to reduce as ordered. “The second time you’ve done this, refused to follow my instructions, means you’re out”. “you didn’t want to take the prednisone, I had to talk you into it, and now you don’t want to get off of it”- his words.
I’ve definitely gotten worse side effects in three months, blood pressure goes up too high sometimes, non fasting blood sugar right at the edge of the range, worse moon face. I probably am too fearful of reducing, Ive always been an anxious person fearful of doctors, but I’ve worked hard in my life to deal with it. I feel I might have been able to stick with reductions over the last 3 months if I had a little more support from him, and not his office staff.
Hope the 40 mg for 3 months isn’t going to totally ruin me.
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Mstiles
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Mstiles, I’m certain that 40 mg for 3 months isn’t going to ‘totally ruin you’. The reason I know that is that not one person replied to you with a “What have you done!? You just ruined yourself!” And there are members here that have taken a lot more than 120mg in 3 months. So put those fears aside. You didn’t ruin yourself. And we can’t know where you would be if you hadn’t stayed there. With the dental problems, you may have flared and have had to go back to 40mg anyway.
Also, I believe that once we have been started on Pred, the possibility of losing sight has greatly decreased. It’s natural to worry about that, but don’t allow it to become a fear that paralyzes you.
The way I see this is that you had a doctor that wanted you to follow his orders, but wasn’t receptive of your fears/dental problems, or if he was didn’t feel the need to take the time to work through them with you.
So, use this experience as a learning experience. Work through your fears of tapering. When in consultation with your GP or next Rheumy, make sure you do your best to communicate with him or her. Try to follow their instructions. If it doesn’t work, you can say you tried. But most of all, try not to worry - especially about something that hasn’t happened. You are still new to this game and trust me, each of us have struggled in the early stages. So, no self-incrimination tonight. No beating yourself up. You just had a little stumble with a doctor that wasn’t a good fit for you. You’ll find your way, hopefully with a doc that has a bit more awareness and patience than the one you just had. Don’t lose sleep tonight.
Also, if you aren’t already using either DorsetLady’s or PMRpro’s tapering plan, get on it. I find it helps with my fear of tapering as I can tell myself as I’m taking the smaller dose ‘tomorrow I’m taking the bigger dose again’ and gradually the thought of the smaller dose becomes not scary at all. Besides tricking the body in accepting the smaller dose, it tricks my ‘afraid’ mind, too.
Under Pinned Posts to the right of this page, look for ‘Websites-useful stuff’. Pull it up and then scroll down until you find the section for tapering plans. There you will find both DL’s and PMRpro’s plans. Look them over to see what would work best for you. Trust me on this, they work.
Thanks Insight, your name certainly fits you! Very comforting, thanks. Yes a stumble, it was not a good fit and I kind of knew this from the first visit. Hope to find a better one.
It won't hurt to tell a doctor right from the get go that you have fears. It's like remembering not to say "Fine" when they ask you how you are. If you were fine you wouldn't be there. We all have to stop saying that automatic "fine" and tell them right away how we really are.
It's the grease that allows "polite" society to function.
"Hello how are you"
"fine thanks...and you"
"Yes fine thanks"
Even when I have been doubled over in pain that's been my response to the question whoever asks it. It's a question and answer that means nothing but ritualized behaviour.
Can you imagine what this forum would be like if we greeted each other everyday with “Hello, how are you?” and expected an honest answer. A person coming in without PMR or GCA would think they’d landed into a ‘Hypochondriac forum’
You can see that happening when you look at our language. Not so long ago people greeted each other with "How do you do" and the words meant nothing more than "Hello". Today I'm constantly irritated by callers to phone in radio shows asking the host "How are you" and the host answering "Fine thank you". However, I think in the context of a medical visit this opening gambit may be the only time the doctor actually asks "How are you?"
Who says "I'm fine"? Isn't the correct answer, "Yes!"
(Sitting here laughing at my feeble attempt at a joke -- yes that was an attempt at a joke. So sorry if you missed it. (Yeah, it was bad.) OK, it's Friday, I was up way too late last night so a bit sleep deprived (imagine that), and I'm am soooo ready for the weekend to start. So would I like a drink? Two, please.)
HA! @ sun. I'm in the Midwest USA and it's been snowing all day. Lightly, but snow's snow when it's April. I think it finally stopped about 30 minutes ago. It's 3:14 pm and I've got 1 hour and 16 minutes left of work and then I'M OUT OF HERE -- maybe to go find something to 'throw down my neck'. (Love that!)
Until 2012 I was fit, healthy very active, then struck down with GCA, deafness caused by this, PMR and since then generalised vasculitis. I have been on much higher doses than you on and off since then. The vasculitis has damaged my lungs so badly that the respiratory consultant attached to the vasculitis clinic has recognised that I when I go below 28 daily my chest is very badly affected. He has suggested that I reduce by 1 mg a month till reaching 28. I have had various other treatments which have not helped.
Am sharing this with you because so many people are anxious about taking pred and it’s possible side effects. But without pred I don’t think a I would still be alive. I now keep a diary of symptoms including when I think things are improving as it is so easy to forget . Am currently taking 32mgs pred daily and 2,000 mgs MMF.
No sensible person wants to take unnecessary drugs but pred can be sight and life saving. Previously taking 60 mgs daily saved my sight. The disease itself causes so many side effects that can be confused with drug side effects.
I don’t often comment but read the daily posts and there are so many caring sensible replies.
Thanks so much for sharing your story, Persi. It really adds perspective and hammers home that our experiences with both symptoms and treatment can be so different. The constant is that Prednisone is our drug. I hope you comment more often. Your journey has been complicated and there may be others that are quietly in the shadows that could benefit from what you’ve experienced/learned. For one thing, your post reminded me that I need to get a journal.
Many thanks for your kind reply. In the past I was accused of being psychologically dependent on pred. I saw a rheumatologist on a Monday in 2016 saying how Ill I felt. She did order bloods but gave me next appointment date six months away.
Next day I am admitted to my local hospital’s A and E with heart problems (blood tests showed raised cardiac markets), caused by Vasculitis. I was hospitalised for 5 days during which CRP rose from 57 into the hundreds during that time.
I changed consultants!
My experiences (and battles) have led me to believe that because vasculitis in relatively rare many rheumatologists will not have had much experience of treating patients with it.
The mantra is usually that it is essential to reduce or come off pred. Lupus, PMR, GCA, vasculitis in it’s many forms, rely on it to be able to function. Rarely is one lucky enough to have a consultant who adopts a holistic approach, who listens to the patient and believes them, and considers that patients quality of life.
Thanks for sharing your story Persi. I think “yes,”dependent on the drug to save your life! Is that a bad thing?? It is hard enough to have this disease and stay positive but to have to also have to battle your doctor is sometimes just too much added stress.
"My experiences (and battles) have led me to believe that because vasculitis in relatively rare many rheumatologists will not have had much experience of treating patients with it."
They get very defensive if you try to suggest that! "We are experts in autoimmune disorders and vasculitis..." Vasculitis needs referral to REAL experts. Even one of the top GCA experts in the UK failed to identfy the risk a patient was at and monitor for cardiovascular problems. She had the heart attack she feared - and was transferred at her request to the top vasculitis chap in London. Who wasn't quite professional enough to entirely hide how appalled he was at her management beforehand.
I'll take being dependent on pred if it stops my pain!
Good for her to be able to see his shock, even if he was trying to hide it. I'm sure she felt some validation. Although what a high price she had to pay.
I bet your consultant was shocked when she heard that you had been admitted and for the reason -- and for good reason! And I hope that it made her much more cautious with her patients after that. My Internal Med doc missed it first view. (Read my bio for the details, if you are interested). However, since diagnosed I've had nothing but excellent care. And boy, don't think that I don't realize it and am so grateful for it. I have to say that I am one of those lucky ones!
I use your taper method starting at week 3 and find it simple to follow. I’m completing first week reducing from 10 to 9mg. Blood markers are fine. At what point should I add another week as I go lower? I want to maintain my tortoise status to prevent a flare!
Thanks! I love having a guide along this unknown journey. For some reason I had trepidation reducing from 10. Now, I’m over the hump. Glad I have moves around magic # 7!
This is not your fault at all and shame on him for not giving the support you need and looking at his behaviour and how that might have contributed to your not following his advice. You are not a naughty child.
As a counsellor, one of the things I almost always tell clients (because they think that the way they are feeling or behaving must be wrong) is that their feelings are never wrong, all we need to do is to find the reasons for them. Ultimately all we do or feel has a logical basis, even if it is not totally clear straight away. This is how we can develop compassion for ourselves that a lot of us are really bad at. Even I have had lots of those lessons to learn on my 6 year PMR journey- I had thought I had it sussed!!
I have said this on here many times before, but I am on my 4th Rheumy and very happy with this one! I have had some terrible advice and was also accused of not wanting to get off the Pred.- I was out of there swiftly!
All we ask is to be listened to, understood and helped with expertise, but that is rare unfortunately. My Gp is good as he admits what he doesn't know, I feel he really cares and he will do anything in his power to help. That is worth a lot!
Your terrible experience resonates. I'm in UK so its harder for consultant to sack you. Mine makes appts 6 months away and so called help line is usually unavailable or staffed by nurse who goes away and returns with answer to different question! PmrPro's post today seems appropriate, does the rheumy know what the medication actually does? Or for that matter what this disease is like.
I followed instructions and reduced from 40 mg to 25 over 4 months, then went back up as PMR kicked in, on 40mg 10 months after diagnosis, this under the same rheumy's instructions! Fortunately I have a charming and very experienced GP who calms me down after consultant appointments.
Wish you good luck with your GP and with finding a consultant who has an interest in making your life better!
Sounds familiar Cally. The help line I dealt with, staffed with his assistant sounds like your experience. After scaring me to death about vision loss from GCA the rheumy was not helpful. Hopefully I can find better.
I've PMR and was kept at 30mg for over 4 months following flare. Been reducing using Dorset Lady's plan and now just going to 15mg which is where most people start. My rhemy is fully behind the slow method of reducing. My GP on the other hand seems to want to increase my dose at every slight change! I do have side effects of moon face, fat redistribution, fatigue etc but still think life better on pred than not.
Nothing, absolutely nothing is forever, everything changes
Thanks for your message,am struggling ,I was on 7mg but had to go on 15mg flare up.waking at with ache in my thighs.abit fed up just now,waiting to see my rheumy,she is very good,first diagnosed wiith gca,but after biopsy,she thought it was pmr.a bit hit and miss SOMETIMES rather be on pred and feeling able to function.
Of course it won't - many people who started at 60mg for GCA will have achieved a higher total dose in one and a bit months than you have in 3 months on the lowest starting dose for GCA.
Of course, that doesn't mean you shouldn't have tried to reduce - just not at 10mg at a time. 2.5mg at a time would have been a good start and perhaps using one of the slow tapers to let your body get used to things on a gentler slope - no brand new skier goes to the black runs on the first day.
And for a new patient they need an experienced and empathetic doctor who is keeping a close eye on what is going on. Not a pathetic one who is happy to send out the bills but not to do the work to justify them.
Yes. Also I’m just realizing he never ordered any tests in 3 months other than the sed rate and CPR. Which were always “perfect” after the first dose of pred. He Did notice non-fasting blood sugar level done by another doctor which was right at the edge of the range, said it was Ok, no advice or instructions.
I wish I had been fired by my rheumy ....I would’have been better off. Hang in there ....I have had GCA since 2012 also and it is not an easy path. Stick with this forum and do your own research . Do not despair.
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