I’ve managed to get down to 10mg in December 2019 after several flares , and 2 bad rheumatologists, and I started a slow taper to 9mg the beginning of January. I had an appointment with my rheumatologist the first week in January.
2 days before the appointment my best friend of 40 years was in a serious car accident and put in intensive care on life support. She’s managed to live through several life threatening crises and it now looks like she will survive but not sure if she will ever be the same. She lives in Atlanta and I moved to Northern California several years ago but we are still very close, like sisters.
At the appointment, my rheumy, who is my third one and has been very supportive up to this point and willing to let me taper at my own pace, told me she wants me to go down by 1 mg a month and be at 5 mg when I see her again in May. I was in shock about my friend and not thinking clearly so didn’t even tell her about my friend or discuss the taper and that I thought going slower would work better for me. When i thought about it later and saw it was written on my prescription I started getting stressed about it.
I also had a stressful appointment with my opthomologist about worsening vision due to a cataract. It’s now difficult to see faces and words on television and to draw or read highway signs.
Now I’m in the third week of the taper to 9 mg and having pain in my shoulders and my head, the back of my head where I had the original pain. It comes and goes, worse in the morning, usually Tylenol and heat work, but sometimes not. I have always been an anxious person, especially about medical things, and I know it’s gotten worse the last few weeks
My question: should I talk to my rheumy about slowing the taper and maybe even increasing the pred a bit? She was fine with doing this last summer when I flared at the same point, going from 10 to 9, and had a lot of stress from moving to a new apartment. Or should I just deal with it on my own, not make a big deal about it, and hope by next May when I see her again I will be down far enough so it’s not a problem.
Some of you may remember I was fired by my first rheumy when I didn’t follow his plan, then bullied by the next one, so I hate to mess up with this one. It’s been such a wonderful change to feel like she’s in my corner.
She did say “this is just a guide, everyone’s different”, but the thought of bringing it up with her is causing stress.
Sorry for this long and rambling post. I’m really missing my dear friend. 💕
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Mstiles
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You need to talk to her. As you've felt comfortable with her before I think you have nothing to fear. Tell her what you've told us, that you feel really bad right now, and you have had this terrible shock involving your friend's accident. You need to defer the taper for a few weeks until you are back on course again.
Doctors want us to be down to 5 mg because that's really where two important things happen. One is the risk of many of the side effects of pred are very much reduced, and also it's a level where your adrenal glands will have to start picking up the pace again. Acknowledge that you would like to be able to get there too, but right now you are too unwell. Approach this rather as though you are asking her advice how best to manage this hurdle, but make it absolutely clear that you are not feeling well enough to proceed with the taper just now.
How have you been tapering? Do you use one of the slow methods which help us to differentiate between pred withdrawal and PMR pain?
Thank you. I have been really exhausted in addition to the pain, etc. two hours daily naps most days.
It's been a stressful few months... Sorry to hear about your friend, its very hard to deal with. I would take to your rheumy and just say your symptoms are impacted greatly by stress and just explain like you have done to us. It sounds like this rheumy actually is human. Once you do reduce try 0.5mg on a slow taper. The impact on your body is reduced that way. In the meantime, deep breaths and just think about the good times with your friend. Sending good wishes.
I'm so sorry to hear about your friend. It's a very stressful time for you - not the best time to feel under pressure to reduce pred. Could you email your rheumy? That might be easier than speaking to her - you can take your time to express yourself, then you could follow it up with a phone call.
Oh I hope she will be “here” again, yes she has always been there for me in this illness, I dong have much family support and she has been so important.
It's been an eventful time for you and your post proves something I'm often saying , " There's nothing that makes you feel more unwell than trying to get better " and , " often it's the people whom tell you to reduce your anxiety that cause you the most , usually at a Doctor's Appointment".
You do need to talk to the Rheumy to let them know what has been happening , both with your friend and added anxiety from other Medical Appointments and the general worry that you have that you may not be able to reduce as quickly as is expected and would prefer to have approval to move at the pace you can cope with . You would like to know your Rheumatologist will be happy with the fact that you have tried to follow the taper guideline but that if you need to slow down , or even have a Flare which means you need to increase , they will be understanding of that decision and trust why you did it.
As someone else said you could send an email to the Rheumy via the Secretary first so they know the full details before you talk to them making the conversation less stressful.
If your Pain has come back the current Anxiety from all different things is probably responsible. It may be worth returning to 10 mg until you reach a decision with the Rheumy have a plan in place so you feel less Stress and have been able to relax emotionally after the shock of your friends accident.
You could then begin the taper again , maybe doing 0.5 mg first to build your confidence and only reducing by 0.5 per taper of two weeks instead of 1 mg straight away. But all in the knowledge that if it isn't working it just means that you need a little extra rest between each taper and you feel calm because you know you are allowed to do what works for you and are not under pressure .
Good luck and give your body chance to relax and restore itself again before you taper again xx
You are not rambling. Get this good Rheumie on side, confide in her about the grief you feel for the friend you have and the change in her - it is a secondary trauma for you and impacts negatively on your symptoms and ability to taper quickly. I know that my Rheumatologist would respond helpfully and I think yours will too. What went wrong with the Ophthalmologist appointment? Do you need an op yet? This is an anxious time for you and it should be completely understandable to your medics.
I guess I didn’t realize the extent of the shock and trauma, I’ve always held things in, but I guess my body is expressing for me.
Nothing really went wrong at my opthamologist appointment, except they were really busy this time and rushed. I see a doctor at a clinic at a teaching hospital who always comes with a retinue of assistants, graduate fellows, etc, and the doctor was hurrying trying to explain the cataract surgery and when I kept asking questions she turned to my sister and asked her to explain like I wasn’t able to comprehend.
The complicated part was trying to explain how I would be able to function afterwords. Because I’m very nearsighted and I have such a difference in vision between my right and left eye, after the surgery on the left eye, I would need to wear a contact lense in the right eye all the time to see. I could use reading glasses for close work. My current glasses wouldn’t work, they would give me double vision. Or I could patch the right eye and just have monocular vision. The cataract in the right eye isnt bad enough yet to operate on.
It was confusing, but I did call back and got a full explanation from the assistant who was very patient and answered all my questions.
I see, how irritating, next time say - excuse me - I am here you know, with a disconcerting smile, he won’t do it again. It’s a worry trying to figure out how to achieve the best possible eyesight following the cataract op. I find vari focal contact lenses bad enough. I always have to sacrifice some distance vision. I don’t wear them much now. Take care! 🌷
what shock for you, I’m so sorry. I’m not going to add anything else other than to ask if you’ve been doing a lot of travelling to see your friend? I only had GCA but the muscle effects of Pred made the constant slight movement of the head really upset my shoulders, neck and head.
I’m sorry to hear about your friend and the emotional turmoil you find yourself. I was following Rheumy advice dropping to 7. The withdrawal resulted in a horrible and lengthy flare physically and emotionally. I became incapacitated with my life revolving around sleeping and crying. I returned to my Rheumy and had diarised the effects. She finally agreed that I am particularly sensitive to the withdrawal from steroids. She asked me to increase by 0.5 mg but this made no difference so I elected to increase further to 8. Walk in my shoes is what I tell them. We are fortunate to have the NHS (just now). It’s not usual for Rheumy's to sack us. My first one tried to bully me with an arrogant and patronising attitude. He wouldn’t listen. So I lodged an official complaint and asked for a new Rheumy. This is my body and my life. We have to try and live not just exist in a bedroom. I wish you well negotiating this.
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