DSNS didn't work for me

I've been on 4mg methyl-prednisolone trying to reduce to 2mg. The pills only come in 4mg tabs. So I tried to reduce using the Dead Slow method and today is my last day of the "old dose". I'm in as much pain as I was when diagnosed 2 1/2 years ago. I'm totally baffled as to what to do. I'm guessing maybe alternating the 4mg and 2mg which I've done before but had to go back up to 4mg after getting to 0 mg. for one month. My rheumatologist was happy I got down so low on the pred even though I told him I still had pain all over! It's like he didn't even hear me! He even went as far to say that the PMR is now gone! Seriously?! I'm in extreme pain! Sorry to rant but sometimes I feel like I'm losing my mind. I hear I need to get off the pred on one side, and that I need to stay on the pred to control the pain on the other side. Drives me nuts! Any suggestions would be greatly appreciated....

33 Replies

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  • Oh dear,

    So sorry to hear you're having problems.

    Don't see how your Rheumy can categorically say the PMR has gone! What's he basing that on?

    Are you sure the pains are PMR? Know that may sound stupid, but you must remember that Pred usually masks all pain, so when you drop doses or come off it altogether, the aches and pains of life come back - even those you'd forgotten about!

    Another thing, you may just be one of those unlucky people who can't seem to get below a certain level - sure PMRpro will advise on that.

    If you're okay at 4mg, can I suggest you go back up to that and stay there for a few weeks (sorry. Probably not what you want to hear) and then maybe get a pill cutter and try a slow reduction from 4mg to 3mg (provided you can cut 2mg pill, needs to be uncoated).

    We all want to be off Pred, but a small dose that controls the pain, and doesn't give you side effects is all that some can achieve at times.

    Don't get yourself worked up about, just take your time, and maybe in a couple of months you will be more successful. The more you worry, the more difficult it will be.

    Take care.

  • Thank you DorsetLady for your reply. The rheumy is only basing his opinion on the fact that I reduced to 0mg, He basically blocked out me telling him that I'm still in a lot of pain.

    The pain I feel is not normal pain. Not only is it my shoulders, and hips, it's my arms, legs, and basically everything in between. It's the most horrendous pain I've ever felt in my life (including having 3 children with no drugs at all) I could not get out of bed, or lift my arms over my head. When I first took prednisone back in Feb 2014 (20mg) it took all that pain away within 2 days. If this is not PMR I have not a clue what it could be.

    I think you could be right about being one of those unlucky people. I was ok at 4mg. but wanting to please the Rheumy and everyone, and do my body a favor, I tapered, no doubt before I should have.

    Unfortunately the smallest pill the Methyl Prednisolone comes in is 4mg making it very difficult to cut smaller than 2mg. and also making it hard to do the DSNS method, because I'm tapering 50%.

    Thank you again....

  • Hi again

    Think the only thing you can do is go back up to 4mg Hopefully it will be enough to get a grip of the inflammation again, but be aware it may not, so you may have consider a higher dose. Is there any other doctor you can discuss this with other than your Rheumy - what about your own general practioner? Although it sounds suspiciously like PMR I suppose it could be something else as well. Think you need to get a second opinion just in case. As for your reducing, I'll put some more thought into it and if I come up with a brainwave I'll let you know. There must be a way around it. In the meanwhile hope you soon feel better.

  • I'm going to see how I feel in the morning. Maybe it was just a fluke to be in so much pain today?? I told my GP I'm having trouble reducing and he just said, "you never know when PMR is going to rear it's ugly head." I honestly think I know more about the disease than they do. He gave me some Tylenol/Codiene which doesn't even touch this pain.

    Thanks again....

  • Had a thought - have you checked paperwork in tablet box to check if it comes in different doses? Sure someone in US said they can get 2mg- but I may be mistaken. Sure Dr could prescribe them if that's the case.

  • He actually did prescribe the 2mg. but the pharmacy said they don't make them. I called a few pharmacies and they all said the same. The Rheumy was surprised to hear that.

  • Hi again,

    Have a couple of reduction plans, so if you want me to send them to you, just message me with your email address (if you're happy to) and we can sort it out. Don't put your email address on public forum though.

  • I think your doctor is bonkers!

    Sadly it sounds as though you will have to be on at least 4 mg prednisolone for longer. You could put it up a bit & see if it goes which is diagnostic of PMR ( possibly up to 10mg or more, then bring down very slowly.)

    I have had PMR for over 30 years now (I am 77) and really don't care what I am on as long asxI don't have that awful pain. The down side is one's' immune system goes to pot . I had C diff, MRSA & a bowel op which took longer to get over but hey I'm still here!!!

    I even managed to fly to India a few years ago but couldn't go now cos of bugs in plane.

    We do have to accept a less physical life, certainly for a bit but hopefully you will be one of the many who get over it!

    The main thing is to explain to friends why we vary from day to day & not overdo things on our " good" days. Good luck with your meds. & your doctors! Best wishes Cemm .

  • Thank you Cemmein. Wow! 30 years! I believe your right on the less physical life. I had an MRI the other day because of "extra" pain in my shoulder. Turns out I have multiple problems with my left shoulder, as well as a torn rotator cuff. Who knew?? I knew it hurt a little more than the right shoulder, but because of this horrendous PMR pain I didn't even know I had it!

    I appreciate your thoughts, and I wish you all the best too!!

  • DSNS didn't work for you because your body is not ready for a reduction. As PMRPro says, you need what you need. Once you've got the inflammation under control again, and been stable for a few weeks, why not try DSNS again, but double the amount of time, especially as it is impossible for you to go down by 1 mg per taper. So do the six day stretch twice, ditto for five, and so on.... Just a suggestion.

    And I completely agree with Dorset Lady. Unless you have some other painful disease it certainly seems like PMR is very much active and your doctor is wrong, or perhaps merely blindly optimistic.

  • Yes I agree that he is blindly optimistic, probably trying to talk me into being well. It really kind of angers me.

    Thank you for your reply.

  • Oh dear tiasbear, I totally agree with the others that if you're in so much pain all over, then your PMR hasn't gone in spite of what the rheumy says.

    If your pain has worsened at the lower doses, then it is understandable that continuing with the DSNS method willy nilly won't work - you need to increase to a dose that first of all gets on top of the inflammation again and stabilises it there before returning to the process of reducing. Otherwise you are getting all the side effects without any of the benefits.

    Also, reducing from around the 7.5mg dose of Pred can be difficult for many because the adrenal glands will be trying to get up to speed again in manufacturing their natural cortisol production having been suppressed by the long term steroids. In a few cases, that production is either very slow to get going or occasionally doesn't get going at all, in which case patients remain on a dose of around 5mg for life. A Synacthen test can reveal whether this is the problem in your case.

    But, if you can increase to a dose that controls the pain and remain there for sufficient time to ensure the inflammation has stabilised at that dose, and then reduce in smaller steps - cutting the pills in half if they are uncoated and ok to cut - you may be luckier next time around. To expect to reach remission in just over a couple of years is ok if it works but unless we have a crystal ball we can't tell how long it will take and many of us have found a much longer timescale to be more realistic - 5 1/2 years for me.

    I do hope you will find a way that works for you to resolve that pain - there is nothing worse than being in constant pain. A change of rheumy might be more helpful, too. Lots of good luck wishes.

  • Thank you Celtic for your reply. I have never heard of a Synacthen test! What is that?

    I think I was ok at 4mg Methyl-Prednisolone (which I heard is equal to 5mg of Prednisone) I think in my tapering endeavors, I was trying to wish the pain away. It sure didn't work....

    As I told the others (who so kindly replied) the pills only come in 4mg tabs which makes it hard to know how to taper. I believe I did 4mg one day and 2mg the next, so it averaged out to 3mg.

    Please let me know what a Synacthen test is.

    Thank you much....

  • tiasbear, the Synacthen test is carried out when there is any suspicion that the adrenal glands might not be producing normal amounts of cortisol. It usually involves a couple of hours in hospital, having blood taken and an injection of Synacthen.

    As I said in my previous reply, long term, high dose steroids can suppress this normal supply as the adrenal glands are receiving a sufficient amount of artificial steroid for their needs. Once we reach the lower doses equivalent to around 7.5mg of Pred, the normal function should start kicking back in slowly, and until it does, we will have a shortfall of cortisol (natural steroid) in our bodies which can lead to increasing pain and fatigue.

    During the Synacthen test the adrenal glands are stimulated to produce these steroids, and if the adrenal glands aren't performing normally, the rise in cortisol after the injection of synacthen will be found to be low if there at all.

    However, in the first instance, if, as you say, you were ok at 4mg methyl-Pred, if you haven't tried it already, rather than alternating between 4 and 2mg on alternate days, could you perhaps try taking 4mg for, say 3 days, followed by 1 day at 2mg, followed by another 3 days at 4mg and then another day at 2mg. If all ok, then you could then try reducing the number of days at 4mg whilst increasing the number at 2mg. It's trial and error, but the slower you do the taper, the better.

  • That sounds like a great plan Celtic! I'm assuming they have that test here in the states...I guess I've just never heard about it.

    Thank you so much for the steroid plan! You give me hope :)

  • tiasbear, if the "plan" works initially and your pain resolves, don't rush to continue to the next step - if there is any hint of returning pain at any step along the way, you can remain where you are for as long as it needs. At around 5mg of Pred, you are at what is considered a fairly "safe" dose as far as side effects are concerned - after a severe flare at 5mg and below, I was increased to 10mg, and once back at 5mg my very PMR-savvy rheumy kept me there for some 5-6 months - it would have been longer if he'd had his way but I baulked at the thought and we met half way! It turned out to be very wise advice as I then continued all the way to zero Pred successfully, albeit even slower than a snail's pace, not wanting to rock the boat.

  • Thank you Celtic. Yes, I think after trying 2 times to get down to 0, I have learned my lesson. It's going to be slow going from now on.

  • Tiasbear, we have the test in Canada, I had one a few years ago, very simple, had no problem.

    Cheers

  • I have that problem with this condition ,My doctors seem to be deaf to it and evade any comment or decision .I find it quite strange they seem to have a collective reluctance to become involved in it at all . I went down to 2mg and the same happened ,I went right back to the beginning of the condition . The rheumatologist took me back to 5 mg where I maintain a steady if not painful but tolerable state .I try not to waste my time on my doctors ,well they left me with nothing but painkillers for over 12 months in a terrible state so no confidence there!!! I will try to lower this dose at some time and see if I can get lower but I had thought I was doing well and was proud of myself until the flares and heat and pain /immobility started again . Sometimes I think we have to stay on what is right for us as an individual . I also have athritis which when that kicks at me I get a reaction from the pmr too sigh . Underactive thyriod (I dont know if this is affected by the other things .Hard to keep on working but I have to . We all have different levels that we need and if you need even a small amount of Pred to keep going .Then you need it .I stay on the 5mg because I dont want to increase but that is accepting an amount of pain and stiffness as a compromise . Do what you have to It's a very inconvenient condition ,it gets in your way and because you can look Ok (no bandages ) it is hard for others to believe . I find this site is helpful I dont feel such a fraud ;-) Information is better then asking a disinterested doctor and just to be able to see that you are not the only one .No body minds a rant we understand .Keep positive and keep asking there is help here ;-)

  • Thank you PjRW. I totally agree! My husband and I discussed this this morning. PMR is not a cookie cutter disease. Everyone knows best for themselves as to what dose seems right.

  • "I stay on the 5mg because I dont want to increase but that is accepting an amount of pain and stiffness as a compromise "

    PJRW, rather than "accepting" the pain you are in, why not increase to, say, 7.5mg for a few days to see if there is any improvement? If your pain improves, you will know that that is where you need to remain for a little longer to get completely on top of the inflammation, following which you may find more success in reducing from the 5mg point next time around, tapering slowly in half mg decrements to each new dose. To ignore the pain you are in means that the inflammation will lurk in the background always at risk of breaking through at any time you try to reduce. You are so right in saying that "We all have different levels that we need" - and my thinking is that at this stage you need a bit more! Do please try it and I hope it works for you.

  • Good advice Celtic. I was wondering the same thing. Is a little pain ok? Or should we be totally pain free before tapering? I know the answer now.

  • I have an appt with rheumy on 15th this month ,will take that up .My own doctors are a pointless excercise but if I change will I get the same elsewhere ? I am always afraid of the long term damage but I do see your point . I drive for a living and that probably dosn't help .I did stop and get a job working in a shop but 4 hours of standing at the till (no chair ) sent me back to the driving and as it is self employed I do at least have the chance of slowing down the workload when I need to .Hadn't thought of the inflammation ''lurking '' ;-) but you are right it does dosn't it . Thankyou for youR thoughts . and suggestions I did increase when I had a long journey and visit somewhere and it did make a difference . Point taken Thanks again Celtic ;-)

  • Any reduction plan will only work to get you to the lowest dose that manages the symptoms - you are never reducing relentlessly to zero until the underlying autoimmune disorder that causes the symptoms we call PMR has burnt out. Your rheumy may think it has burnt out - if you have PMR symptoms it blatantly obviously HASN'T! You can only tell it has gone away if you can get off pred and have no symptoms. You haven't.

    As someone else has said - he's bonkers and doesn't understand the nature of the beast. The standard German rheumatology textbook tells them PMR lasts an average of 5 years - you have only had it for two and a half years or so. PMR never comes in a standard package - there will be some where it fades away in a couple of years but you are quite obviously not one of them. I've had it for 12 years - it certainly never went away in the 5 years I had it without pred. It's a bit more difficult to tell while you are on pred because as I said - the only test is being off pred, there is no alternative test.

    You need a new and realistic rheumy if your GP can't manage you and provide the prescriptions for 4mg tablets. Four mg is a very low dose - it would be better to be lower obviously but if you can't you can't. It s very simple!

  • That's a good point! Just because someone isn't on pred, it doesn't make their PMR go away. (I said that in an odd way) :)

  • This might sound odd, but have you tried Bowen Therapy.

    Some of us have and I was one of them. I was in a wheelchair at the time and using a walking aid in the house. Within six weeks, no more wheelchair and no more walking aid in house. Just a walking stick for outside (a folding one) for when pavements or ground looked or was uneven.

    If you do decide to try it - you will know and so will the therapist (and s/he will tell you) that if you are no better after three weeks of one hour per week - it is not for you.

    Best thing PMRpro ever told me.

  • I would love to try Bowen Therapy! Is it a mellow massage? I don't know if we have that in the states. I know if we did my insurance wouldn't cover it.

  • Yay! It turns out there is one about 50 miles from me. Thank you HeronNS!

  • You have.

    There is a group of people in the USA (various states) who have set up an forum and also use Patient.co.uk. I helped them get together and they set up this groups.yahoo.com/neo/groups... just in case you want to make contact.

    Here is the link americanbowen.academy

    Yes, it is so gentle you can fall asleep.

  • Thanks sambucca! I will give them a try as well!

  • I'm fairly new to this and have no knowledge of drugs but could you go from the methyl-prednisone to straight prednisone? I don't know what that does to dosage. I'm asking because straight prednisone comes in 1 mg pills which might make it easier to taper. someone here may know, or your doctor or pharmacist. Also just for reassurance, my rheumatologist says he wants to get me down to 3mg and then if it's as low as I can go, it's ok . And he seems more cautious than the last doctor I saw.

  • Yes actually I started on prednisone and they switched me because my rheumy at that time thought the methyl-pred might work better for me. But now that I think about it, it probably wasn't working because I was reducing too fast. She had me taper every month. The rheumy I have now says to taper every 3 months. This just reaffirms to me that everyone needs to be on their own schedule!

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