Hi, I have been on Pred for almost 5years. I was doing well with my reduction getting down to 2.5 on dead slow method. A new Doctor arrived at the Surgery and said to go down to 2 immediately for a month the n 1mg for a month and the n off by August.
I am doing the dead slow method to get down to zero but am in terrible pain all over body. Even my toes and fingers hurt. Also the exhaustion is terrible and I am very weepy.
Advice please, am I reducing too quickly.
He even said all my other problems were caused by Pred and once I was off they would all go away.
Thank you, Jenny x
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What a total idiot, please tell him from me! Why can’t some doctors learn about medications and how they work with illnesses instead of just making it up?
As others have said 2.5mg is doing your body no harm, but your PMR a lot of good!
Obviously you still need that level as your current situation proves!
Another GP is required methinks.
What a numpty. See another doctor a d say you have been trying slow taper. I am sure the stress of him being so unbending will not have helped your PMR. Another doctor for the cattle prod. Don't reduce...in fact you probably need little extra blast. I was just reading something how people with Ra or certain lung conditions should be taught to take extra pred to cover stressful situations like your body would. Please see another more realistic and sympathetic Dr. I had 2 new ones at my practice in past 5 years and I just broke them in recently. 😉💜
Oh dear, preserve us from the new broom! You were doing beautifully, I sincerely hope he hasn’t ruined everything!
Insist that you return to 2.5, you may need a bit more to get this flare under control. He’s wrong about Pred - it has a hand in the fatigue but is not responsible for pain all over. Either take this doctor on and educate him ( there have been successes on here) or find another doctor - pronto!
He is mixing up his PMR I would think. I have GCA only and Pred has given me bad pain all over ( muscle myopathy) and exhaustion since day one. I have learned to cope with it. Obviously if someone has PMR the Pred acts totally differently for you. At least that is what I have learned on this forum. He has probably only met patients like me
best advice I can give you- change a doctor and go back to your usual gradual reduction. As far as what to do at this point - I would go back to last known good dose (2.5) +5mg for several days ( so 6-7mg) and then try to drop quickly to just above 2.5mg and then gradually reduce as you did in the past.
Eh? 2.5mg causing all that? I’d say the exhaustion and weepiness it’s your adrenals not being up to the job yet. I was so weepy when my adrenals we’re challenged until they caught up. When I’m reducing at these levels, I also hurt all over with general body pain and I don’t have PMR, no stiffness though. It took me 14 weeks to get from 2.5mg to 2mg.
Thank you to everyone who replied to my post. I think I am having a flare, so am going up to 5mg for 2 days, 4mg for 2 days and so on until I get back down to 1mg.
I am frightened to use all my tablets though, because he said he wants me off by August and might not give me anymore tablets, especially as my last blood test was normal, which lead him to say that the PMR had gone.
I can’t believe your doctor said that, how crazy is that.
Steroids may
have it’s horrible side effects but for me it’s a wonder drug. I couldn’t cope without them.
I have tapered from 15mg of prednisone to 5 mg over a period of 10months, and am ALMOST pain free.
He obviously isn’t educated enough about pmr. If my pain got worse I wouldn’t think twice about upping my dose.
I’m convinced if you stop the medication you will be back to square one.
Good luck
What a stupid man! I don't have your disease but I do take Pred & have been on it since 2012 or thereabouts. One thing I have learned from the team of Consultants who look after me, is, that 7.5mg pred is their magic number & as a patient, I am relatively safe on that.
I once had a new broom, who said 'we will do this' - I wasn't happy but he insisted. It was downhill after that. I am now 'stuck' on 10mg pred but my lead clinician is excellent & constantly checks my bone density etc..
Good luck Jenny & don't let him bully you, get one of your GPs on side too, make certain you don't suddenly run out of pred.
Now you have reminded me, I once saw a Consultant on a Sunday morning [they were trying to clear the backlog!] & I had a similar conversation with her & she said that some doctors felt that they needed to be seen to be doing something and that made the patient feel as though the doctor was treating him/her
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