My rheumatologist said at last appt " its been two and a half years you shouldn't need to be on prednisone."
I was down to 3mg in September. Got covid, Husband had end stage IPF and passed away and a whole lot of other stuff happening. I started flaring and went up to 6mg for a few weeks and then started to taper down, got to 4.5mg and felt all the pain and stiffness coming back so last week went up to 6mg again. It's going on 4 months and of course I'm still grieving. I know this causes the inflammation to go up. I'm comfortable at 6mg but not free of symptoms. I think I may have to stay at 6 mg awhile. Thoughts on this........????
Why don't doctors understand this???????
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Paperroses
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Why don't they understand it? Because some of them wear blinkers ...
Some do - my lovely guy never complains about me still needing well into double figures - and while my husband was ill I needed 19mg to be able to function in the period before he died. Since then I have got down to 12mg. None of my doctors here complain in fact.
If I were at 6mg I'd be looking for a different doctor if mine complained.
I dont think he wants me back because he told me PCP could handle it from here and I have an appt on Feb 2 with a new doctor for a wellness check. And I know you are going through all this too with loosing your spouse. My heart goes out to you.
Yes do stay at 6mg, and a little more if required…..I was on 20mg (GCA) when my hubby died, after increased ESR readings in previous 4-5 months. I didn’t have a flare in the normal way in that I had no return of symptoms, just the high readings which sent GP into a bit of a panic.
I found after the stress of his late stage cancer and bereavement I managed to get back on an even keel, and tapering became relatively easy.
Like PMRpro I think you need to find a more sympathetic/
empathetic Rheumy if that’s possible.
PMR or GCA is hard enough to cope with without losing your partner and an uncaring doctor.
I am so sorry that you are going through such a painful time. I am also sorry that you don’t have a wise kind doctor who understands all this. Your self care is commendable, I would trust your instincts, you know what you need 6 mgs is a relatively harmless dose. Sending you a hug. X
Thinking of you Paperroses and sending you a hug. I think you should stay where you are comfortable to help you through the coming weeks. Maybe try again in the Spring when everywhere is brighter. Take care Jen x
My hubby is terminally ill and I am nursing him. Our GP and my Rheumy have both told me to stay on my 5mg prednisolone dose and to not worry about trying to reduce. They both said I may need to increase if I got a flare up and to not hesitate to do it as I am under a great deal of stress. I have had PMR for over 6 years and never been below 5mg. So I can imagine the advice to you should be to take what you need to get through. Thinking of you xxx
Hello Paperroses. I’m sorry about your loss. When I lost my mother this spring, I had a big flare. That was also at the time of my COVID vaccine so I had trouble sorting out the cause. I have never had trouble getting more prednisone since my vision is my doctors’ priority. That said, switching doctors is not always so simple. Perhaps take the time to explain your situation reminding the doctor that you yourself want to avoid prednisone as much as possible. Explain that you don’t take dose increases lightly. Good luck.
Dear One, my heart goes to you in this sad time. Now, my suggestion,..... Stop trying to taper. Just settle at 6 mg,( or more if needed) for the time being. You have heard all the words of wisdom from others...now I just say, ...give you a break, ....All will settle in due time🙏🏽
As for prednisone, I have been using it since 2013. My PMR has ebbed and flowed through loss of my adult son, and the rest of events that come with living .
Currently, I am using 5.5 mg, and quite happy to stay here for a while.
First of all Paperroses so sorry to hear of your life experiences, Covid and loss of your husband. Stress for sure! I have been off of Prednisone since August of last year 2021, started Methotrexate only.......then because of a cold in October stopped with the Methotrexate and forgot to start back in November and since???? For the last 3 weeks I have been in a lot of pain! I have an appt. with my rheumy this week and thinking I will be on something soon.............prednisone or methotrexate? I have had PMR for 3 years as of November 2021 As mentioned I was down to no prednisone and only methotrexate but my rheumy has also been and is concerned re: my liver levels. Bottom line, you know how you are feeling and I think, only my thought but PMR is aggravated by Stress and maybe that's what the Dr. don't get???? We'd think they should understand. Take care, of yourself and I hope you find someone that listens to you!
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Stress and tapering -again
preds down but flare ups again 
Flying / anxiety / stress / Insurance / Critically sick brother
Flared once again at 7.5-disappointing.
Here we go again - def. a flare
