Confused with Dr. Tapering meds

Today I had my follow up with new Rheumotologist. Since he came on my case after first Dr started me on 20mil of pred he now want to start all over by lowering the dose and getting new blood work after three days of lowered dose. He wants me to go from the 20 to 10mil immediately. He said he needs to see if I get any flare  ups and will then put me back up if needed.  He also said that the only true way to diagnosis the pmr and Gca is to do this because back in Feb. my blood work was elevated but not by much and I told him all about my scalp pain and that I couldn't move my arms legs and neck and he said well it could still be rheumatoid arthritis but not true pmr which I do not understand. How can one Dr say it is the other says the symptoms mimics other diseases. Every thing I'm reading says my symptoms are classic pmr and possible Gca. I'm still getting some tenderness in head but not as severe. At a loss as to what to do but Am stopping the higher dose and praying I don't get a flare up. He said if I do I can go right back up if needed.

38 Replies

  • Shastring, will be praying for you, as well. These diseases are so difficult. I didn't go back to check all your info and can hardly remember mine ;-) Any drop can be difficult. Since scalp pain was and is one of my biggest complaints with GCA....I would be concerned. Really, the 20 mg might be taking care of PMR but would not be enough to take care of GCA. I am back at 60mg after two recent Flares. I intend to stay there until I am certain the pains associated with GCA are gone. As yet, I haven't seen a doctor who knows nearly as much as those on this site.

    My blood work has been good since the beginning. It did not stop me from losing some sight and some hearing...left side. I don't think the tests can be counted on. From all that I've read, they are about 50% wrong.

    Just be careful and go with what your body tells you.

    Thoughts are with you, CJ

  • Thank you so much chatthesea, I'm really besides myself because I had been getting the head pain way before the sudden onset of the body pain. I knew something was wrong when for months I felt the scalp pain but I didn't seek help until the morning I woke and couldn't walk and had the worse neck, arm and groin pain. I feel so much better on the pred but as you say it's hasn't been a high enough dose for Gca. This Dr wants to play Russian roulette with my body, experimenting to see if I stop the meds if Ill be ok and he said maybe I'll be fine for a while and can always go back on it. He said if good work shows no inflammation then no meds needed. Not sure I agree but have to try and yes pray for the best outcome.

  • I fired my rheumatologist due to her pushing me to taper down. Once I got down to 7 mgs doing every two week drop I flared bad and because I have GCA also I went back to 20 mgs prednisone.

    I asked my GP if she knows enough about my illnesses and she said yes. She is unique as she likes that I have this support group to help us both. By the way my labs have always been pretty low if not normal. But I went from not being able to raise my arms or move without pain to a miracle my first day on 20 mgs prednisone so that says it all. Then months later GCA came to visit and I ended up at 50 mgs. Now starting the dead slow onto 15mg.

    Good Luck n remember the doctor works for you. Be brave and tell him of this group and read some of the studies to share with him. Tell him where you are comfortable . Labs are not the answer our symptoms are.



  • I forgot to mention here that my Dr also told me that I should not listen to the info I read in online and I told him about this wonderful support group and he just said stay off it. I was so upset that I told his assistant that the people here are more informed that he is or more so than any Dr I have seen and I've been to three so far. Why is is a Dr is to proud to admit that they are not saints, that new things are learned every day and that any new info can be of such great help. I'm truly at my wits end but have no other choice but to see it through with him because I need help more so now that Im having this flare up. Thanks all for listening, reading and offering your insight!

  • Shastring, it's so upsetting to try to follow a doctor when you know you can come to this site and get first hand information. Even when we get back to South Carolina and to my primary Rheumy...I doubt we'll follow his advice. I don't believe he has enough knowledge. At least, he listens and allows us to do what we believe is right....unless he feels we are way off base. He doesn't seem to have the need to always be right. My ex-Rheumy here if Florida claims to be working with numerous patients with GCA and PMR....I don't believe him. His suggestions are dangerous.

    Just be careful and don't allow your doctor to intimidate you. He's a doctor, not God. He can't and doesn't know everything.

    Thought are with you, CJ

  • Print off the Bristol paper (linked off the Patient forum), take it your doctor and tell him you got it from a PMR/GCA forum:

    The Bristol paper was designed for doctors to use.

    Maybe that will help him understand you are not just listening to a bunch of nutcases!  Good Luck.  🍀💚

  • Hi HeronNS,

    Thank you for that link, I printed all nine pages & bringing them to my next appointment. I guess we have to be our own advocates because these Dr.'s sure aren't listening to us. I mean, I tell this man about all I'm reading and he just brushes it off with a stay away from the computer. How rude and at the same time pretty dumb since the internet has so much info that can be helpful.

  • Oh boy do I empathize.  I went to the ER on two separate occasions in the past few weeks and was told my the doctor on duty that my pain wasn't classic of GCA, that I probably didn't even have GCA (was diagnosed last summer), that it didn't come back in flares, .....I just looked at him with my jaw hung open, got dressed and came home, still in terrible pain......

  • Oops! I responded before reading further. As an ex nurse some doctors have a god complex and can never be wrong. I did not respect nor agree with their opinions most of the time BUT there are lots of doctors who will listen n help. I love my GP.

  • Where are you? In the States. I am in Michigan. 

    Took me a year to find a Doctor I love, trust and respect. Doing well with GCA but would never had been aware of what, how, self awareness, etc without this forum, PMRPro and Dorset Lady. Listen to them.

    This forum "rocks" as the grandkids would say. 

  • Right now we are in Fl. Normally winter here until May or June. Plan to go back home to South Carolina next week. I don't want to see the Rheumy I've seen a few times here....don't trust him. The Rheumy I'm using In S.C. Is somewhat better. He listens and lets us make our own decisions. Since finding this site, we are more confident but have still made mistakes. After two bad Flares....I have been back to 60mg for the last three weeks. Had been down to 17. Terribly disappointing. With each mistake, ours or the doctors....we've learned lessons. Have felt better for several days. hope to start a slow taper once we are home and settled. During the last fifteen months...have only gone backwards.

    Happy to hear you've found a great doctor and are doing so well. May need to move to Michigan :-) Be well....

  • I am not the same as when I first started the pred, since he tapered me last week, then upped it again I am still have some pain in my groin and neck. I was pain free the first two months and now cant get back to it since this flare up. Waiting for all my tests to be done with  mris are scheduled  next Friday so have to grin and bare it all until I get the results.

    You be well also and nice keeping in touch with all you here.

  • Hi Breeze 43,

    I'm in Florida.

    Yes and the grandkids woud be so right....  I am so appreciative of all the people who contribute information to us here. I went to Opthomologist today, he is sending me to a neuro-opthomologist to make sure all is well. He did not find anything bad, my eye pressure is borderline for glaucoma, which can be  from the low dose prednisone but he didnt seem to concerned, but he said the nuero Dr will observe the optic nerve more intensely. Take care and good luck!


  • Hi

    Others will advise you who have more experience but that is a huge drop

    you cant  always go by bloods as many with PMR show normal blood works

    I recently dropped from 10.5 to 10 and been doing this vey slowly within two weeks pain was back. Its  not to then you realize how bad it was to start with.

    If you go down this route as you are aware any concerns go straight to ER if it is GCA you have to act quickly.

    Best Wishes


  • Thank you Rose  I definitely will go to ER if needed and lately my eyes are bothering me so going to Opthomologist as well.

  • Hi Rose, My Dr. said that here they don't taper in half mil incriments, does anyone know if is this true here in the US?

  • I'm not sure what the docs say since I am no where near .5mg doses.  But, believe me...once I am down to 10mg...I will consider very small amounts. regardless !! My body, My life. What works in one country is likely to work in another. I have some 1mg tablets. Can cut tem in half.

    Shastring, hope your week-end is going OK.

    Prayers, CJ

  • I'm in Canada.  My pharmacist actually gave me a pill cutter when I asked her about cutting my tablets!  I use the .5 mg taper now that I'm getting quite low - started doing this at 7.5.  Now I'm beginning a taper to 4.5.  My doctor said right from the beginning that I would have a lot of control over when and how fast to taper, although she did give me guidance to get started.  And the strangeness of saying "here" we don't do it that way.  Maybe in his mind!  I wonder if he's feeling threatened and that's why he can't bear to have his authority questioned?  

    Shastring, do you have anyone you can take with you to your next appointment to give you some support?

  • Where in Canada are you HeronNS (would that be Nova Scotia ?)  I live in a small town a few hours north of Toronto.  No specialists here of course so went to Toronto but long story now I am doctorless and managing the disease by myself.  Hopefully this will change soon.

  • Hi Animi, Yes, Nova Scotia, Halifax area.  I'm going to visit my daughter in Belleville this week - far from you, although same province.  How can you manage the disease if you don't have a doctor - how do you get prescription renewals, etc.?  I haven't seen any specialists and my gp has been letting me "manage" the disease myself.

  • Today I wound up in the er, couldnt move my legs, my arms were burning and my neck in agony, I did manage to have the blood tests at lab first nand when I called to let my Dr know about all the pain his nurse said he would call me after patients but I waited an hour then had my husband take me to hospital. As soon as they registered me the Dr called, he told them to up my dosage to ten mil and within an hour I was about 80% better. If only this Dr had told his nurse to call me back & tell me to do this so instead I was lying in agony in a hospital bed.

    Now Dr wants me to come in tomorrow morning and Im questioning what for. Do any of you get your blood results over the phone because this quack has me come in every week and charges me as well as the insurance company and he doesnt even examine me. He claims results must be given in person.

  • How wonderful the pred worked as you hoped.  

    Regarding getting blood results - it depends so much on the jurisdiction.  Here I have to go see my doctor, BUT it is covered through our universal health plan so it doesn't directly cost me anything.  I also don't automatically go to talk to her about results as the office will call me if there is anything that needs to be discussed.  If indeed your doctor is double billing, once you are strong enough you might consider complaining to whatever is the overseeing body in your part of the world, because that is unethical, no matter where you live.  Possibly even a complaint to the insurance company, I don't know, someone local to you should be able to give you some advice.  Obviously you can't alienate your medical caregiver just at the moment, not until you've got someone else, or maybe this one will see the light and understand the mistakes he's been making. 😒   

    Hope things go better for you from now on. 🌞

  • Typical Doctors re PMR not a clue sitting on their chairs with a smug grin on their face  saying reduce reduce your steroids.  When it goes wrong its us that end up in PAIN. You go back to them and they say oh that did not work, better go back to higher dose and start again.  Been there a couple of times .  THE ONLY WAY IS A VERY SLOW REDUCTION IN THE STEROIDS.

  • Hi pauls955 how right you are. This Dr seems so non chalant and just making me symptoms seems like they are part of old age.  I told him that as a very active 63 yr old to develop all this so suddenly it's not normal and he just grinned and said  rheumatoid arthritis is so common. I then replied yes but this is different, my friends with ra have swelling and completely different symptoms and he said well scalp pain can come from bad discs in neck etc and he just wanted to ignore the pmr and Gca altogether. I have to see it through with him as my only other alternative is to look out of my city for new Dr. Thanks for the input!

  • I was told I was depressed and needed to get out walking and biking.......could hardly get out of bed.....

  • I was advised by my rheumy to drop from 20 to 10 after 5 weeks. When I returned two weeks later with PMR symptoms again, he did not advise upping the dose again. He suggested Cymbalta!  I upped it a bit myself just to function. I'm not adding another drug to the mix!

  • Hi Danielle,

    I woke up today to so much of the exact same pain from two months ago that I cried for an hour. After just 48 hrs of being dropped to the 5mil I'm back to where I began and its just horrible. I was feeling so fantastic for the past two months and here I am, walking stiff, groin & neck pain, I had 100% motion in my neck now its as stiff as a board & my arm hurting so totally confused as to why my Dr didnt wait a while but I have my blood tests on Mon & he wants me to wait until then to change anything. I will not add another drug to my body either but if I need to up the pred then so be it. He believes that you try and live without the drugs, that you try and heal naturally but hey, he's not the one in agony on a daily basis. Good luck to you and lets hope everyone here can find some normalcy in our lives.

  • I am so sorry you feel so horrible.  It must be even worse for you because now you know it doesn't have to be.  The thing is, the doctor is going to see you hobbling into the office in all your burning agony and if that doesn't open his eyes....

    And as for "healing naturally" - I think many of us are working towards that, but we could not get there without prednisone.  It's like if you had a broken bone he's telling you to get physiotherapy and do pushups, but your arm is still broken and needs to be in a cast and knitted together first!

  • When my doctor questioned whether or not I might have RA (because of pains in my feet and hands when tapering below 4 mg.), she ordered a blood test for an RA factor, and took x-rays of my hands and feet ("to look for any pitting -- an early sign of RA").  Thankfully for me RA was ruled out.  Since you're remaining with your current Rheumy, you might want to ask about these ways to determine if you have RA instead of, or along with PMR/GCA.  This seems preferable to me to running such a casual experiment on the possibility of your relapsing.

  • It's all because there are no 100% accurate ways of deciding if someone who has PMR symptoms has it or it is early RA - or even a whole slew of other things. There are a lot of things that cause PMR symptoms - including very low vit D levels! All of those should be ruled out before choosing PMR as the diagnosis. The response to pred is seen by many doctors as the clincher - most of the other causes do not have the typical dramatic and fast response to 15-20mg pred.

    The only certain thing is if you have a temporal artery biopsy - and it is positive. Then it is certain it is GCA. Even it being negative doesn't rule out GCA, all it means is they didn't find what they are looking for: the giant cells that give it its name. They can skip areas of an artery or they may not even have reached the temporal artery - the symptoms are often due to problems in other arteries but they aren't as easy to get at to do a biopsy and the temporal artery is "disposable", you can manage very well without it.

    Even with a suspicion of GCA, 20mg is a very low dose to start with, it is more normally 40mg or even higher. So maybe your new rheumy feels the first one wasn't entirely convinced either and wants to see for himself. Many doctors feel that 15-20mg is enough to manage even GCA that isn't affecting your sight. If when you reduce the dose to 10mg you get ANY visual symptoms don't hang around, return to the old dose and be firm with the rheumy about what happened. If it is overnight or weekend - go to the ER/A&E. 

    However, he's wrong about the blood tests - if the current dose of pred is just holding any inflammation then it is very unlikely that he will get raised ESR/CRP in 3 days, it often lags behind increasing inflammation when you have been on pred. And not having a raised ESR/CRP level is also not conclusive: 1 in 5 patients with PMR or GCA do not ever develop what is called the "acute phase response" and their ESR and CRP levels remain within the normal range. I have never had an ESR above 7 or a raised CRP - I definitely had PMR, I very probably have some GCA.

    At least he has said you can go right back up - remind him of that forcefully. If it is any consolation - dropping from 20 to 10mg overnight is very likely to cause a return of symptoms in some shape or form so I wouldn't do it on a Friday - I'd wait for Monday. Weekends are a pest in routine healthcare!

  • Thank you PMRpro I agree with all you stated. I asked him why when I started the pred everything got better, that after Mobic and Naproxin did nothing. He looked me in the eye and said pred makes everything better and I said but it's not a pain pill, it's helping an inflammation better than other meds. I definitely will go to ER if any thing arises but I don't think after almost three months of pred that my blood test will change all that much. One test was mildly positive I believe it was the factor one another negative and my ear was elevated but not overly high. They did check my vitamin d levels and never said it was a problem. My crp was 0.42 not sure about the other. I guess now if I'm not getting a bad flare up he will get me down to five mil and then totally nothing which scares me so but I need to see it through. Thanks again for your reply!

  • Where on earth do they get the idea that "pred makes everything better"? It does NOTHING for real fibromyalgia, for example - if it helps a patient with fibro it was because it was possibly PMR and misdiagnosed since there are loads of overlaps. It doesn't help other forms of inflammatory arthritis as much and any patient who is given pred and the response is less than dramatic should be investigated for other causes of the symptoms. The medical literature says that in a paper co-authored by one of the top PMR people in the UK:

    Good luck!

  • Hi Shastring, 

    What a nightmare. Can understand if new Rheumy not sure, he wants to do another blood test, but as PMRpro says, after only 3 days of reducing to 10mg unlikely to prove  anything different, only give you Pred withdrawal symptoms! 

    The only thing you can do, I suppose, is go along with his request, but you need to be sure that he's going to contact you as soon as he gets the results, and not leave you in limbo not knowing what to do. It's all very well saying, you can go back up, but it sound all a bit cavalier to me. If you have GCA then it's not something to be messing about with. 

    If you do ask he requests, then if you have any problems whatsoever on the lower dose,  go to A&E. 

    Hope you soon get some positive answers, and a sensible plan to deal with your symptoms. 

  • Hi DorsetLady, thank you for your opinion and it makes so much sense. I feel like an experiment for him and believe me I will call his service should anything happen. As of now I do have a small headache, pretty steady but guessing it's from the new lower dose.  I am dreading a flare up of arm, neck or leg pains. Going for the blood tests Monday morn and hopefully This Dr will get me regulated. I hate to think what can happen if he weans me off completely.

  • i do not think the DRs realize what pain we are in when we get a flare up

  • Shastring, please keep us informed. This may seem like a long week-end. Hopefully, all will be good. Would think twice ( or more) about reducing further. Prayers...CJ

  • Oh boy, reading about nonchalant,  disinterested,  uninformed.....doctors yet again breaks my heart.....having worked with many, I saw such good caring ones but unfortunately not nearly enough.......I just really don't understand it.  During a recent visit to the ER with a bad GCA flare I was told once diagnosed and treated GCA doesn't come back !!!  And also that my pain wasn't even characteristic of GCA !!! I just packed myself up and left.

  • Looks like there needs to be better education at the med school level.  At least then the next generation might have a chance of more consistently competent care.

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