Adrenals again!

[SuziCutie]

I am down to 6mg for 2 weeks now. Absolutely done in and very down in spirit!! No pain so want to try 5.5/6mg alternate days.

Just wondering if I should hang on a bit as aware my adrenals are slow to get going??

What do you think please ??

[DorsetLady PMRGCAuk volunteer]

Question - if you are done in and very down why would you want to reduce? That is only likely to make you feel worse.

Even though you may be pain free (which shows PMR is under control) at these sort of levels you need to stay at each dose for at least a month- most tapers recommend that - and really to get your adrenals going you need to reduce as slowly as possible.

They need to be nudged gently into working - not pushed.

[SuziCutie in reply to DorsetLady]

Thanks that’s helpful. I have reduced slowly .5mg every 2/3 weeks if all’s well but seems must go slowly slowly now!!

[DorsetLady PMRGCAuk volunteer in reply to SuziCutie]

So far, so good, but yes as slowly as you can now.

Once you get below 5mg you will get virtually nothing in the side effect line from steroids so that’s not an issue.

It took me about 9 months to get from 6mg to 3mg reducing 0.5mg a time like you. Each taper took about 5 weeks.

My adrenals seem to take an age to get going, but maybe because I was on very high doses at the start for GCA (as you were) and about 4&1/2 years all told.

It just a matter of patience - and we get plenty of practice of that with our illnesses.

[SuziCutie in reply to DorsetLady]

O dear 4 1/2 years. That’s a long time. I was started on 60mg Dec 17. So really grateful to have got this far. Had 2 flares and a spell on methotrexate which made me very unwell. Rheumatologist wants me back on it if I can’t manage to taper.

So the challenge is on to prove I can do it without methotrexate 😱😱

[Hidden in reply to SuziCutie]

But rushing through to get to zero isn't a taper. A taper for me is slow and in line with response to less pred. As I said the other day 6mg is nothing in the grand scheme of things. Dr needs to back off. .....I know that is an easy thing to arrange 🤪🤣🤣🤣

[DorsetLady PMRGCAuk volunteer in reply to SuziCutie]

Actually 4 years plus is not that long. No flares and no MTX so I think I did quite well.

Plus I was undiagnosed for 18 months previously - so 6 years in total!

As we’re always saying - it takes as long as it takes!

[jinasc in reply to SuziCutie]

Leading Researchers say that Metho does nothing for GCA. It can help some people with PMR and I have noted you have both.

Did the PMR come first or were both diagnosed at the same time?

[SuziCutie in reply to jinasc]

Diagnosed same time Dec 2017 . Thanks for that. Determined not to go on methotrexate!! Your comments confirm my determination 😊

[PMRpro Ambassador in reply to SuziCutie]

At this level of pred there is no justification for adding in a drug that makes you ill and with no proven record for PMR.

[Hidden]

I would stay where you are until things settle. Just give your body a chance to start helping a bit. I always left every drop at least a month and used dsns at 0.5mg most times. I have been at 6mg for a year nearly as everytime I tried to drop I feel like death warmed up, symptoms started kicking in and zero quality of life. That doesn't mean you need that amount of time. I have never done a drop, felt worse and stayed or dropped further since the first reduction my Dr did at the beginningwhen I flared and markers worse than at beginning. Lesson learned. I hope you feel better soon.🌻

[SuziCutie in reply to Hidden]

Thank you. Staying where I am for few more weeks. Will only try another taper when feeling lot better. I am chuffed to have got to 6mg. Lots to be thankful for 😊

[Hidden in reply to SuziCutie]

That's how I feel.

[SnazzyD]

Hello . I was still feeling rough at 6mg as I don't think it was low enough to challenge the adrenals properly so I kept going. However, I still dropped only 0.5mg every 6-8 weeks so as not to challenge with a size 10 boot. Alternating days with 0.5mg would have been too much For me I think. I popped out the other side feeling improved at 5mg. It’s a tough call as to whether to stick or keep challenging.

[HeronNS]

When you feel ready to taper, try a more gentle way. The smaller the dose you are taking the larger, proportionately, each drop in dosage is. Try one of the slow taper plans in the post which is now pinned "Steroid tapering plans".

[Noosat]

Just my experience, I am down to 4.5mg for a week now. I do know the feeling of being exhausted. However, I am continuing to stay at this dose, for at least another 2 weeks. I am finding that I am doing a little better with the fatigue as time goes on. Does this mean adrenals are working more? I don't know, but will persevere. I do note that the day after I have the most activity, walking for an hour with rest on the way, I feel my functioning is improved. I have come to firmly believe that exercise, in some way, is an important pat of the healing process. I admit that often it takes all the will power I can muster, but think it is worth it.

[DorsetLady PMRGCAuk volunteer in reply to Noosat]

Hi

Yes exercise is good- in moderation obviously - and sometimes it’s not really what you want to do - but you do feel better for it afterwards.

At such low levels, the slower you reduce the better for both your adrenals and your illness. We that have been there know that 0.5mg really does make a difference - despite what others may think.

Is your exhaustion there all the time, or just occasionally. I found that mine was spasmodic and for no apparent reason- which always struck me as peculiar - but that’s me all over! 🤣😂🤣

[Noosat in reply to DorsetLady]

Thanks for reply. I just got home from park. We have to be there by 7a.m. because the temperature is going to high of 100F to-day. It was a good walk, sky overcast and a light breeze. On Friday I walked 5600 steps and to-day 7600. Yeah !!!! It took me an hour. I sat for a few minutes and was stopped a couple of times to chat with other walker/dog owners. My snack when I got home was a little more substantial than usual, a reward.

I have an errand to do early this afternoon, but then will be in the house reading and kind of relaxing for rest of day. May even watch an old video of The Bletchley Circle. Hope you had a good week-end. Yes, kind of spasmodic, sometimes even get a "second wind" in the late afternoon.

Maggie

[SuziCutie in reply to DorsetLady]

I find my exhaustion spasmodic. Comes over me in waves for no apparent reason. Often leaves me feeling bit sick and tearful 😥

[DorsetLady PMRGCAuk volunteer in reply to SuziCutie]

In that case I think it’s more likely to be adrenals - feeling nauseous is a symptom, and probably the tearfulness!

Life’s a bit of a b£&&#r sometimes isn’t it?

[SuziCutie in reply to DorsetLady]

I think £&@?/. Is a good way of putting it. 😂😂😂 better than swearing !!

[SuziCutie in reply to Noosat]

I try to have a walk every day as it really helps me feel better. Just have to pace myself.

[Joydeck]

After a year hopelessly stranded on 7 mg pred I am, at last, dropping 0.5 mg every six weeks. Today, I began 5.5 mg. Since I weigh tablets to the nearest 0.25 mg, I am effectively alternate dosing.

Mercifully, I remain symptom free and can exercise to my heart's content.