Here's the situation: I've tapered dsns to 6.5 twice, and each time feel absolutely lousy physically, mentally, and quite emotionally unstable. (Sleep alot, pain and stiff in my body, and depression.) Just cant endure life below 7 mg of prednisone.
Any thoughts?
Hello, this can be a minefield at this dose level for the very reasons you state. However, as long as there are no condition symptoms you just have to go through it but really slowly to try to make it less extreme. Your adrenal glands need to work a little bit now but the dose may still be too high to make the adrenal glands notice enough. It’s a bit neither here nor there dose for some people. As you get a bit lower it eases off because they should start to get the message. How did you drop to 6.5mg?
Using the dead slow nearly stopped method. But it was murder after week 3
In that case you were going below the level you needed.
Doesn't matter what plan you use, if you need x amount - which in your case seems to 7mg at the moment - you need x amount...simple as!
Thanks
Two -
1. Your body/illness needs 7mg at the moment, so if that the case then you won’t get lower now....doesn’t mean you won’t get below it in a few months...but not now.
2. Maybe your adrenals are also complaining - that could account for sleepiness and the depression, but not necessarily pain/
stiffness.
3. Go back to 7mg for a couple of months, and next time you try, if you aren’t already, use a slower tapering regime - such as attached -healthunlocked.com/pmrgcauk...
4. TBH if you’ve got down to 7mg from GCA high doses within 3 years that's not bad, although looking at previous posts you seem to have a hate/hate relationship with Pred.... so maybe time to accept it and go a bit more slowly.
PS.. took me over 4 years to get from 80mg to zero, with 10mg to zero taking almost a long as it did from 80 to 10mg. Plus 18 months before being diagnosed, so you have a while to go.
Been in remission over 4.5years now.
Thank you. I appreciate your input. I do hate the pred weight and osteopenia. That's nothing to love, but I understand and appreciate that the prednisone saved my life.
Well it saved your eyesight (like mine, well partially anyway)- so although. you don’t like being on it (who does) it’s a necessary evil! ...the weight will go, and there’s lots you can do to stop the osteopenia becoming worse.
Like what? I'm doing enough calcium and Vit. D....Get Reclast infusions.
Strengthening exercises, HeronNS has posts on the subject.....hopefully she’ll see this and come along with advice.
Ok.I took the rest of my prednisone. Maybe I'll be more open and receptive when I feel better. I appreciate you all. I really do. I feel so incredibly bad right now. It will get better.
I’m just a patient, my Rheumy was pushing MTX as if he had stock in its manufacture. Made claims there was a 5% chance of negative side effects versus 100% for Pred. Also mentioned it takes 2-3 months to see any benefit (I saw none so after going off it for surgery, just stayed off it). Supposedly in some cases (I don’t know the mechanism) it can aid in lowering the dose of Pred needed to control PMR. Do you think Blurry62 should ask his Rheumy about it?
I wont take methotrexate.
Specialist said its benefits hit way below the mark; few of his GCA people found it helpful. I know some, personally, who've tried it and were miserable - I'd rather do the dance with prednisone.
Personally at only 3 years - with GCA - and having got down to 7mg, I wouldn’t be pushing to add in another drug. Your Rheumy may consider there’s only 5% of negative side effects (would query that assumption) - but it’s still adding in the possibility of more when at such lose doses the side effects of Pred are definitely on the wane.
My opinion only.
Was my opinion too it’s why I kept saying no for months. Only after the last flare did I try it just to shut him up. No negative side effects, but no positive ones either. My father’s death was indirectly caused by a hospital doctor’s glee at throwing a bunch of different meds at him all at once. Resulted in him getting drug induced Parkinson’s syndrome. I told mom to call Dad’s Cardiologist / GP immediately because they put him back on meds he had taken him off of. He came in, looked at the chart and went off. Next we know the Hospitalist was there apologizing and remove 5 meds.
Too late though, damage done. Due to all his involuntary movement after eating once he went supine (it was a never-ending battle trying keep him above 30% recline. I stayed and helped the attendant for 4 hrs at least once) and aspirated partially digested food died from asphyxiation. NO! Died because some dumbass doctor didn’t look up possible drug interactions.
It’s why I don’t trust medical doctors and have an excellent relationship with our head Pharmacist.
I feel you.
Self advocate, self advocate, self advocate. That's the mantra.
Not least the stats that say about a third of patients on methotrexate stop it because of adverse effects! For a load more it doesn't work. I did read that a lot of rheumies are oblivious of the actual figures!
Sounds about par for the course!
I'm much improved this morning. Anticipate being even more so by noon because I've taken my 7 mg again.
Thank you for this opinion. Not just because it's one I agree with,but because it always had made sense to me. GCA and side effects of prednisone while always watching out for flares is plenty for me to monitor.
Actemra is iffy for me as well. I am TB latent and that gives me a 35% chance of it becoming active if I swallow actemra.
Thank you again....for hanging in there with me.
Didn't know it was that high! My husband had TB when we lived in Germany (so we discovered a few years ago!) so I have to go through not only the testing but probably also the 8 months of abx protection against TB if the rheumy or I wanted to try Actemra. I also found info recently that the same should apply for leflunomide.
I know just how you feel - the struggle to taper pred at this level can be grim. I have had GCA for nearly 5 years & have hated pred all the way through, I know it saved my sight & for that am eternally grateful, but I have never felt good on it, have also been diagnosed with osteoporosis, weary of always watching my carbs, wanting to keep fit but more often than not don’t feel good enough to do it. It has taken me a year to come down from 7 to 6mg - it is tough to keep ones spirits up. But as all the experts have said it would seem you need this level of pred to keep the inflammation down plus the adrenals not doing much which give very similar symptoms - not easy to remain chipper. Just go slowly & try & stay positive.
Hi this definitely is a stage where many struggle , what I found helpful was to reduce when feeling better and with each drop rest and just gradually increase activity etc. The difficulty is deciding if it’s the illness or adrenal function which is causing the problems. Try and be kind to yourself, I for one have felt that frustration of not feeling well, but it doesn’t help the recovery. Take care and hopefully you will soon be feeling better
A lot of people seem to have problems at 7mg. It is also around the point that the adrenal glands have to start working again and with some people the adrenal glands do not like it!
It's either poor return of adrenal function or you have PMR symptoms as part of your GCA.
Either way - if you can't live with less than 7mg yet, you have to be patient. Take a few months holiday from tapering and try again. You will get lower, just maybe not yet.
The weight will go, probably alone if you wait, if you cut carbs drastically then it may go sooner. I'm stuck on 15mg, I have lost 4lbs of lockdown weight over Lent. Not speedy, but I can feel and see the difference. And if you pile up a load of butter packs - you can SEE how much it is. 
So...since I’m between 4.5 & 4mg/d and feel fine my Adrenal glands are currently functioning to some extent? I wondered how low I had to go for them to start waking up and slowing down the taper to allow them to come back. Read that I could be on enough Pred for PMR and low stress situations, but if a high stress situation I’d not have enough Cortisol production putting one in somewhat of a crisis. Unfortunately, after putting that out there it gives no further info as to how to aid in prevention. Like maybe after tapering to a new dose just staying there for 2-4 weeks before stepping down again. Nor at what dose of Pred this risk really increased or what that threshold range is and how one knows (without a test) when past it. Plus what I read here it seems like the test isn’t given until Pred dose is =< 3mg/d leading me to think that Pred doses greater than 2-2.5mg/d can shutdown the Adrenals.
Sorry for the long post but confused and frustrated that not finding info that addresses this issue directly.
Can you help?
There is no simple answer I'm afraid. Everyone is different, not least because not everyone absorbs the same amount of pred - some absorb 50%, some 90%. Then the whole biofeedback stuff varies as well. It has always been thought that anything above 7.5mg pred suppresses adrenal function and so that is about the point at which they should start to wake up on the way down. But they DON'T wake up fit and raring to go and sometimes it isn't until you have been at too low a dose of pred for a long time that it works. More recent thought is that as little as 2 or 3mg pred provides enough to function well on. One lady on the forum was at 2mg and felt fine. Until her rheumy sent her for a synacthen test as it was his normal practice. She had absolutely no reserve adrenal function at all so was put on a higher dose of pred and given a rescue pack of injectable hydrocortisone for emergency use.
The discrepancy is because as long as more than 3-5mg pred is present, the results of the test are unreliable and all they do anyway is show the adrenals CAN respond, not that they DO respond as that requires a lot of other things to click into place. Just because the fuel tank is full doesn't mean your car will start.
The reason we should always carry a steroid card is to inform healthcare staff we are long term steroid patients in the event of an emergency in case a boost of steroid is required. It is much the same as we talk about adrenal cover during an operation - the anaaesthetist will deal with that by giving a bit during the op if they feel it is needed. Below about 10mg after being on pred for a long time there is a theoretical risk of an adrenal crisis and we should be aware of it but it isn't a common problem.
Ugh. They don’t give any kind of card in the USA ... at least neither my GP nor Rheumy ever mentioned it.
I had purchased a bracelet, which I lost, that I used a label maker to update my current dose. I’ll go on Amazon today and get another and wear it Thanks.
I see you are in the USA, so I don't know the details of .... better not go there!
If you were in UK I would mention what I have called the triple whammy of PMR/GCA, steroids and lockdown, all of which can cause similar symptoms. I could add Boris as a fourth whammy. I too get days of feeling 'one degree under' and am not sure what to blame (I'm down to 6mg on a very slow taper). Certainly lockdown doesn't help and there are issues of anxiety for me (partner has mild dementia). The fact that I only very rarely get pain that is similar to the first PMR pain I experienced leads me to think it is not a flare but is due to other whammies. Personally, if I got depressed I would seek treatment for that rather than change my tapering regimen.
Just my thoughts.
I have done exactly the same as you- tapered to 6.5 twice on DSNS and have difficulty functioning at 6.5 due to extreme and utter fatigue! I saw a rheumatologist privately last week and he has suggested I get a synacthen test as he thinks it’s my adrenal glands causing the problem and not the PMR.Also could you please tell me, anyone, if that test can be done in a GP surgery or does it need to be at a hospital? Should I stay on 7mg meantime- he suggested alternating 7/6.5 daily for a month ??? Thank you and good luck Blurry62.
It is usually done at a hospital because it isn't a single action. It is a basal blood sample followed by and injection and then another blood sample at 30 mins. Sometimes they do another blood sample after 2 hours so you have to wait for that. It is also possible that you might have a reaction so they usually like to have you under observation.
Your GP can do a basal cortisol which may also provide a bit of information but at this dose it is unlikely - most endocrinologists won't do any testing when the patient is at above 5mg and some like them to be down to 3mg. When you are still on 7mg the adrenal gland doesn't actually need to do anything because there is enough corticosteroid present in the form of pred for the body to function well - and a synacthen test doesn't show the adrenals are actually working smoothly, it shows that they are able to respond in an emergency situation when there is a sudden demand for cortisol to help the body deal with it.
The only thing that will tickle the adrenal glands into life is to be at a lower dose of pred - braving the utter fatigue until the HPA axis (hypothalamus, pituitary, adrenals) gets its act together - it involves multiple organs, glands and substances and all them must be in balance to work properly. Even after you are off pred altogether it can take a year to settle down to work reliably all the time - someone has posted about that today.
Your private rheumy may well be right about the fatigue - but I don't think he is totally au fait with the complexities of assessing adrenal function.
Thank you, so basically it’s not worth having a synacthen test done just now? I can’t face a hospital visit unless it is going to be very beneficial!The rheumatologist was running 45 minutes late and he seemed in a rush, which has annoyed me intensely, and maybe he suggested it to give me something to grasp on to. What do you think of “trying to alternate daily doses” for a month?
I would be surprised if anyone would do a synacthen test at the dose you are on to be honest - if they did it would mean they don't really understand how it works.
All he is suggesting is what we bang on about all the time n the forum: slowed tapers. Personally I think alternating doses if the drop is realtively big can be quite uncomfortable - but using old and new in some pattern does work, Snazzy will tell you about this stage of reducing - she had months of the overwhelming fatigue. I'm not sure that your doctor is right about it not being the PMR but it very probably is a combination which does complicate it all at this level.
healthunlocked.com/pmrgcauk...
has links to all the versions - the Dead Slow and Nearly Stop has an explanation about the theory (others may, but I wrote that).
By the way - hospital visits really aren't that awful - plenty of spacing, PPE cleaning - and the procedure is quite relaxing. jinasc told us she turned up with her book, was settled in the reclining chair her hospital uses for such procedures and they took the first blood sample and gave the injection (they put in a butterfly cannula so there is only one jab) the next thing she knew was that having done the second sample they brought her a cup of tea and handed her the book with a bookmark in place! She'd dropped off ...
Best hospital experience ever in the whole of my life. Made me smile this morning and I needed that smile.
After beautiful two days, temp outside 20c and gentle South West wind, able to get some bits and pieces done in the garden and left rest till today.
Woke up, snow and North Easter, the lazy one that goes right through you and not around, 7c Temp. March in like a Lion and out like a Lamb. The Lion has forgotten he is supposed to stay away. Welcome to more 'topsy turvy' weather.
Now 11am bright blue sky, sun shining, snow slowly melting the North Easter now a gale........grrrrr.
Stay on 7, you wont hurry the end result at all by making yourself go thro all that .
Are you talking to me or Bubble56?
You I guess..
In my case I must get off prednisone. stomach bleeding since last June. On prednisone for 10 years. GCA just will not respond. On 2nd infusion of Actemra. tried the shots last year. Hated the shots and they did not work well for me. The infusion is working very well. First month was nothing. Second month it kicked in on day 5 and I am feeling a lot better. Hope it works, as my dance with prednisone must come to an end. On 7mg as I type this. told by rheumatologist to spend next month getting down to 6. I do one day a week 6mg, then next week I do two days a week at 6mg, then next week 3 days a week at 6mg. That type of taper works better for me than alternating, 6mg one day 7 the next. Only side-effect I have so far to Actemra is a mild headache in the late afternoon. I have been dancing with pred for 10 years. If you need 7mg now, then that is what you need. Clinical trials have shown methotrexate to be a poor medication for GCA. Methotrexate can be very hard on your digestive system. I hope you are being very gentle with yourself. One of my problems is my type A personality . I tend to overdo, which makes it harder to get well.
I really appreciate you sharing your experience with me. I was feeling pretty dog gone good on 7 mg. And as soon as I dropped it things went south. Regardless of how slowly I was going, I felt bad. Now I'm convinced and assured that 7 mg is what I need to stay at for awhile: Months. This was the second day of return to 7mg, and saw dramatic improvement! I bet tomorrow will be a great day. I really appreciate so many of you " talking me off the ledge" again.
7mg. is a beachhead in the battle. Our own adrenal glands make that amount every day, 7mg to 7,5. when we go on prednisone our own adrenal glands can go to sleep. Waking them up takes some time and can be torture to our poor bodies. My rheumatologist explained that I am one of his super sensitive patients . We are using Actemra to help me ease the dose down and we are going very slow. He says we need to trick my body into not realizing it is not getting so much prednisone. We do that by going very slow. Yes, I have an amazing rheumatologist . I have had enough bad doctors to know and appreciate how wonderful he is. I have left the office of previous rheumy docs literally in tears. I have been slandered, berated, yelled at, made fun of, etc. This can be an emotionally exhausting illness. It is ironic that the stress of the illness can contribute to the illness. take your time on your taper. Learn to listen to your body, and remember that a drop in dosage on Tuesday, may not show up as illness until Thursday. The blood levels do not change dramatically, but over a 24 to 48 hour period.
I have the return of original PMR if I drop below 9mg....have tried 4 times in 3 years with no success. So I’m going to stay here for awhile rather than yo-yo up and down and put my body and mind through it.
For whatever reason, this is the dose that I need, and it sounds like 7mg is the dose you need.
Ok. Yes. Thank you for sharing. I need 7 mg. 🌻
Hi Blurry62I have GCA (2.5 years) and I reached the same stage as you a month ago feeling absolutely grotty. I went up to 10mg and was feeling fine again. The quick cortisol test was done and that was fine - the rheumy did not reckon the methotrexate was doing any good. I went in for tests, subclavian vasculitis still prevalent, upshot is I have been approved for tocilizumab and am on a tapering regime. The tocilizumab is not widely prescribed, it is very expensive and you have to have extensive blood tests, xrays etc to make sure you are a suitable candidate. I will supposedly be off steroids by next January and am feeling very positive (and high on my reinstated 40 mg prednisolone!!) However I have been lucky and would have had to stay on my 7+ mg which I did not find too bad - better than risking my eyesight!! I will update.
Please do. I want to know how you're doing as you go along.
Will do - not started tocilizumab yet - got to have my training on self injecting!!!!
Depression from GCA or from prednisone
tapering from high dosage of prednisone
Taper from 5mg down...
Tapering down to 1/2 mg prednisone 
GCA patient, with tapering issues after 4 years
