Notes on failed taper from 4.0mg to 3.5mg
Posted , 19 users are following.
I want to share my notes on how I manage this failed reduction in dose.
I have PMR almost 2 years now. In mid August I started my taper from 4.0 mg to 3.5mg using DSNS method. By mid September I have completed the taper, but things were not good. I decided to go back to my previous dose - 4.0 mg. Here is why:
- After a week or so into transition, I started to feel tired and had less energy then usual.
- In the second week of taper my right knee started hurting and withing few days I had to have a knee brace during my walks.
- About the same time I noticed that my recovery time after biking was much longer .
-Towards the last week of transition, my leg muscles and shoulders were hurting like I had done some heavy lifting, and I can feel muscles "burning", usually indicates overworked muscle.
-Last 2 weeks my neck hurt so bad I could not turn my head on one side ( right).
All of these symptoms were telling me that I may be too low (or too early) with my attempt to reduce pred. So I decided to increase the dose...
I took 2 days 5mg and then went back to 4mg. After just 2 days I did not need knee brace any more. Leg muscle and shoulder pain went away within a week or so... My neck is just becoming normal and it has been almost 2 weeks since I increased the dose.
I just had visit with rheumatologists today and he confirmed that my inflammation was up at 0.5 ( here normal CRP range scale is between 0- 0.3). He agreed with me about the dose. When I mentioned that I will try to reduce again before next checkup (in 90 days), he suggested that I stay at 4mg. Am I lucky or not to have understanding rheumatologist who does not push for senseless reduction in pred?!
0 likes, 56 replies
Michdonn nick67069
Posted
Yes, you are very lucky. My Rheumy is pushing too quick. I am affraid at some point I will just say NO! She is also pushing to try another drug, to which I will say NO! Good luck, stay positive and try to smile on this journey. 🙂
constance.de nick67069
Posted
Yes, you’re lucky😀. Most ‘so called’ specialists want you off Pred yesterday, if not sooner!!
Thank goodness I am one of the lucky ones too. I have had PMR for 5 1/2 years and Polyarthritis for over 3 years and my rheumy just lets me deal with these myself. I was down to 3 1/2 mg about two months ago but ESR and CRP shot up and I was in a right state again. On advice from our experts on this forum I put my pred up to 10 mg for 3 weeks, after that I reduced very slowly again and am now down to 5 mg where I will stay (if necessary for life)!!! It’s my body!😏
linda17563 nick67069
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He said last time, I`ll see you in 3 months, I said what`s the point, let`s say 6....but I think a year or so ago, I signed up for vasculitis research, and I`m his guinea pig!!
BettyE linda17563
Posted
I feel for you as I, too, was one of the lucky ones allowed to use her own brain and listen to her own body.
I wonder if somewhere there is the brave soul who will challenge these adamant medics who, obviously, are not on the same wavelength as some of their colleagues. I think a a polite but very firm enquiry about the diversity of medical opinion re reducing steroids is what we need and fingers crossed we don't encounter one of the huffy types.
lodgerUK_NE BettyE
Posted
A leading researcher is conducting a 'fact study' on the reduction plans.
Progress is slow, but we will get there in the end.
Patient Power.
We have issued nearly 800 of these two free plans and many people have discussed them with their medics and have used them with, I might add, some successes.
Lelee lodgerUK_NE
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lodgerUK_NE Lelee
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Yes, go to the website www.pmr-gca-northeast.org.uk or pmrgcafighersne@gmail.com[/b] and then send an email - -subject heading 'Reduction Plans. They will be sent to you free of charge.
EileenH BettyE
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EileenH Lelee
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One of them is here:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
Silver49 nick67069
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How fortunate to have an understanding and helpful rheumatologist. I have just been left by my GP to manage myself for which I am so grateful. When I read on this forum about others who are suffering as a result of unsympathetic medics I realise how fortunate I am. The stress of being forced to reduce will not help PMR. I hope you stay pain free on the recent increase. As others say it's not a race to zero but what keeps us comfortable and able to function. Best wishes
BioMedGeoff nick67069
Posted
Indeed you are lucky, as am I. I have had PMR for 12 years and allowed to control my prednisolone dosage myself. DSNS is an excellent and well proven way to reduce your dose. However, you know when you are reducing too quickly and need to react by increasing your dose to deal with the increased inflammation. Good luck.
lodgerUK_NE nick67069
Posted
This simple test will tell you whether your adrenal glands are waking up and at what level they are operating at. Remember that when you have been on long term prednisolone, time has passed
It can take up to a year before they are fully functional. This is one of the reasons why you must carry your Blue Steroid Alert Card for one year after ceasing to take pred.
mark9992 nick67069
Posted
Nick, I'd be interested to know if you did the full and long version of DSNS, or a truncated version that is suggested might be done. I think you're right to continue and try and reduce, although now that your notes tell you what to expect, you could fall back to your old dosage more quickly. My only other suggestion is that you be on your old dose a week or two to make sure that you're adjusted to it again before starting on the next descent.
For what its worth, even though you had to go back to your old dose, you likely had an overall dosage of less than 4mg for that time period. I consider any prednisone I didn't have to take a minor victory.
Best of Luck to you,
Mark
nick67069 mark9992
Posted
Keep in mind that average length is 5-6 years. I would rather stay at 4 then risk full flair and need to go up to 10-15mg and start all over.
mark9992 nick67069
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Very smart, Nick. I'm at 21 months and 5mg. I'm just about to start on Oct 8 a reduction to 4.5mg. I'm going the full metal jacket 51 day version because most seem to agree that as we get lower reducing gets trickier. I'll have also waited a solid 2 weeks from my last reduction regimen. So I'm being very cautious at this level.
I envy you working towards being under 4mg because...at least in my case...I have several serious side effects such as diabetes, and every step down on the medication is a step away from that disease as my blood sugar gets better and better.
I still have some modest pain in my shoulders, but at 8mg I'd have told you it was monster pain, so here I am 3mg lighter and feeling better! Still, I can appreciate what you mean by there being no rush...except that I desperately want this PMR to be over with and get off of this two headed dragon called prednisone. You and I are probably lucky too in that the women seem to get it worse than we do. God Bless everyone struggling with this thing. Isn't it hard enough to be old without having God rub our noses in it...lol.
Silver49 nick67069
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I think that's wise......2 years is not long. I am almost 2 and a half years on steroids and started 1.5mg this week. I bought a pill cutter some time ago but it's a bit hit and miss. Miss being the operative word as I found parts of the steroid on the table. I gathered the bits up and stabbed at the amount so goodness knows what I am having each day apart from the 1mg. I'm not going to fuss about the dust which escapes.
BettyE Silver49
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Boots used to do a pill cutter that had a lid. True, you can't avoid the bit of splintering but I found the little well collected virtually100%
Silver49 BettyE
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Thank you. It has a lid! I don't know what I did but it was fine the first day and seems to be alright now. I think I must have tipped it and ther's a space where it can escape.
Silver49
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there's
mark9992 Silver49
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Silver49 mark9992
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I think I'll just carry on with cutting. I don't think the 1mg is much smaller than the 5 as you have so rightly said. Perhaps it'll improve as I practise.
Lelee BettyE
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Silver49 Lelee
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Lelee Silver49
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I don't know I have not gotten that far. However after I stopped cutting and paired. 2-1's with a five instead of cutting I have done much better. He had me go back to 10 and I have slowly worked my way down. I'm now at 4 which is the lowest I have been in 3-4 yrs. I wake up feeling great. Someone told me this weekend that I am the friendlyist I have been in years. A dear friend I might add. It's amazing the change in personality when you feel good. Im excited to get off of this crap and to start really living. I have to add I think quoting beer and my statin have so much to do with it as well.
EileenH Lelee
Posted
There is no reason at all not to cut the pills - I know what he was taught, that the drug isn't evenly distributed through the tablet. Some doctors will try to tell you that ONLY scored tablets cab be cut, and if they are scored they are obviously designed to be cut. The manufacturing process for scored and non-scored tablets is identical. But low dose tablets are priced relatively higher than higher dose ones - i.e. 5x1mg costs far more than 1x5mg. So the reps push the idea they shouldn't be cut to make money for their company. And the manufacturers just laugh! All the way to the bank.
"Im excited to get off of this crap and to start really living." - I haven't not lived since I started pred - it gave me my life back. I'd never class pred as crap.
Silver49 Lelee
Posted
I don't think there was any change in my personality. I tired more easily and had to give up some pursuits but I still managed to enjoy life. I am now doing more but I think it has made me redefine my life and be more choosy about what I want to do. In other words, I do a lot more of what I want and and am less of a people pleaser! It doesn't mean that I don't care about family and friends and I help out when I am able and at times when I am not. It hasn't stopped me doing what I want but it has made me think more about what I need to do not what social norms dictate. However, I've never been a person who conforms and bows and scrapes so no change there. I've always been a bit of a rebel who doesn't give up easily. I think we all have to work out what suits us and our lifestyle but without pred I'd still be languishing. It's a friend not an enemy and life is short so we need to make the most of it. This is not a lecture but I'll get off my soapbox now.
Michdonn EileenH
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EileenH, I do not know how I could cope without Pred, but when I was on 30 mg, I was ready to jump out of my skin. I was a b*****d, I could not stand myself and neither could anyone else. Hopefully I won't need that much again. I think a good name is "Devil's Tic Tacs". Thinking positive and smiling. 🙂
EileenH Michdonn
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I had PMR for 5 years without pred - I can tell you that PMR made me fairly b******dish and being on pred brought me back to my normal level of not suffering fools gladly! Which means being fairly direct - but not explosive
Michdonn EileenH
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Believe me I was ready to explode at anytime. Now on 12.5 tapering to 10 next week. Feeling pretty good, waiting for the snow. Using a BSOU to try and get my balance. Still smiling 🙂
Silver49 EileenH
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When I was a student one lecturer told me that he could see I didn't suffer fools gladly. A manager described me as a person who takes no prisoners. I am fairly placid but if I see injustice I stand up and speak out. Colleagues used to fall about laughing at what I challenged and had no fear about it. I was like that as a young child so nothing has changed. Some people feel they shouldn't be challenged but if they are in the wrong they can't be allowed to carry on regardless, tramping on people. As you said, Eileen, direct but not explosive. I see one of my grandchildren has the same 'streak'. I'm glad it won't die out after I'm gone! 😂
EileenH Michdonn
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That's what I'm saying - I exploded as a result of PMR. Pred was quite a moderator.
Michdonn EileenH
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Just the opposite of me EileenH, the Pred drove me crazy. That is why I call it "the Devil's Tic Tacs" cannot live without it and cannot live with it.
🙂
Lelee EileenH
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Eileen, What you said really makes sense. I was just passing on what my Doc told about not to cut a pill. And as for Pred. Yes, it did make living possiable easier to get through a day. But we all know what it can do to our bodies if we are on it for very long periods of time. And for me it has been years. My skin tears so easy I'm full of cuts and bruises. I now have a leaky heart valve which the cardiologist believe is due to long term Pred use. I have been very irritable says my family. Also weight gain and vertigo all caused by the Pred. So you see my golden drug has turned to crap on me. And I mean me. For the rest of you I'm very happy it's working it's magic for you to make your days manageable. And to live life. But I pray everyday I can live life without it. And I hope he listens to me.
Silver49 Lelee
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Guest Lelee
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have you tried Tumeric. I took it additionally to the pred for a year in the evening and now on zero, one capsule in the monring. It has 1000 mg curcumin and 5 mg Black Pepper extract. It is my little helper.
I was very moody on pred.
Michdonn Lelee
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