Disappointing Downturn

[Groggrim]

Since reducing to 6/5mg on alternate days on the advice of my endo I am not feeling so good, more affected than I would expect to feel after only a 0.5mg drop, and I have noticed a low grade heavy ache returning to my shoulders and arms again.. I did wonder if my thyroid levels could have dropped as I have developed some of the old hypothyroid symptoms that I used to have before taking Levothyroxine. Do steroids affect the absorption of thyroxine does anybody know?

[Gala123]

I had similar issues doing 3/4 mg because I did not want to cut pills. I then spoke to a pharmacist and they advised to cut and do 3.5 mg daily instead of alternating. It worked much better. Sorry, I don’t know about thyroxin side of things.

[Groggrim in reply to Gala123]

Thank you Gala 123, I did wonder about the alternate dosing but because my endo suggested it I thought it would be ok. Now I'm not so sure. I'm not seeing him for another month so I might go to 5.5 each day, (or even stay at 6) he won't know 😉

[SnazzyD]

Alternate day dose swings can make one feel constitutionally worse than a gradual change. It isn’t for everyone. My poor brain can’t work out what you mean by a 0.5mg drop if you are alternating by 1mg every other day. Can you explain?

How far into this did your aches reappear? At this stage it could be low cortisol because your adrenals aren’t able to quickly adapt to the drop yet. Or your PMR (or whatever it is that needs Pred) is not being held by the current dose. Or both.

Is your Endo aiming to treat your PMR or your adrenal function at the moment?

[Groggrim in reply to SnazzyD]

Hi Snazzy, eeek my brain is in freefall today. Yes, I am definitely feeling worse on the alternate day dosing. I think 6mg one day and 5 mg next day equals 11mg over two days which equates to 5.5 a day and I had been on 6mg (and quite comfortable on that). I think that's what he said 🤔

Aches reappeared gradually after three days and have been niggling ever since (5 days)

Not sure what endo has in mind as I have only been with him for Hashimoto's up till now. He has asked me to see me and I have an appointment with him in 4 weeks time and asked me to stay on the 6/5 until then but I will return to 6mg until then and explain why when I see him.

[SnazzyD in reply to Groggrim]

I think no matter how you square it in paper, your body feels 1mg less the next day. It can either cope or not. True, if you are wanting adrenal glands to recover they need this lack of cortisol to trigger the sequence of events that leads to more cortisol. This means feeling decidedly off is par for the course for many, like me. I felt rough nearly all the time as I reduced until my adrenal axis got the message. This is why a 0.5mg drops introduced over 8-14 weeks was the only way I could function.

However, as we keep banging on, PMR (or whatever it is) will come back if you reduce past what you need, no matter what your Endo, GP, rheumatologist, husband, etc think. Time will tell for sure. It may be that like many here have had to do, and that’s advocate for yourself and say what you are prepared to do or not. It’s your life not theirs.

[Groggrim in reply to SnazzyD]

Thank you for your response x

[Groggrim in reply to SnazzyD]

PS, it's a bit tricky because my husband does not like me on steroids because of what happened to his mother. I also seem to get varying advice depending which GP I speak with.

[SnazzyD in reply to Groggrim]

Did she have the same condition and care. In my nursing career, in the early years, I saw some horrendous cases of people poorly managed on steroids and had awful damage due to doses never really being reviewed. Some conditions, especially respiratory before medication improved, were having to stay afloat on much higher doses than they would now.

[Groggrim in reply to SnazzyD]

Yes, she was on Cortisone for years. Ended up with one of the worse cases of osteoporosis her consultant had ever seen 😥

[SnazzyD in reply to Groggrim]

What for?

[Groggrim in reply to SnazzyD]

My husband believes she had Polymyalgia, and she only had one kidney. She had a lot of pain.

[PMRpro Ambassador in reply to Groggrim]

But that was many years ago - do you know approximate dates?

[Groggrim in reply to PMRpro]

2007-2009 Hubby's cousin just confirmed that mother in law had PMR.

[PMRpro Ambassador]

As mentioned - a lot of people find the switching between doses like that is hard work and using a pill cutter is far better.

But your endocrinologist is doing a taper that might work for the adrenal side of things - what you are describing has the hallmarks of PMR that is no long quite controlled by the dose of pred. It is my shoulders and upper arms that make their presence known first. Your rheumy has said they think there is some evidence of PMR being present - however much you may not want it, the things you have told us make it sound more and more likely, or at least, a pred-responsive myalgia of some sort.

In some people it appears that pred at high doses may suppress the TSH, misleading GPs to think that the patient needs less medication, they drop the dose and the patient does less well. It is less that it affects absorption of pred.

You can look for all the things that MIGHT be causing your symptoms - but you cannot rule out that it is indeed PMR. You are just repeating the problems you have had each time you have tried to get to a lower dose. If it is an adrenal problem, you have to put up with it until the adrenals wake up. If it is because this is PMR - you won't taper without the symptoms returning.

[Groggrim in reply to PMRpro]

Thank you for your plain speaking x

[Groggrim in reply to PMRpro]

'You can look for all the things that MIGHT be causing your symptoms - but you cannot rule out that it is indeed PMR. You are just repeating the problems you have had each time you have tried to get to a lower dose'.

I know, I think I am having trouble accepting what I have been given. I am a long term control freak (long story) and I feel out of control 🥺

[PMRpro Ambassador in reply to Groggrim]

You are by no means the first to have this problem - it isn't just you. Many people struggle with the loss of control that PMR represents for them. You can only deal with it by identifying the things you CAN control and take the other things on trust. No-one can do it for you. But we can tell you that we aren't making it up, we have all walked this path before you.

[Groggrim in reply to PMRpro]

I never thought for one minute that anyone would be making it up.

[PMRpro Ambassador in reply to Groggrim]

I didn't put that well - but what we are telling you is all from personal experience. Doctors can give you theoretical advice, none of them have had PMR and most of them have never actually taken steroids. There are a couple of doctors who have - and they understand something that most others appear not to. We recognise your problems, many of us have experienced them ourselves. But we can't do it for you. You have to trust someone.

[Groggrim in reply to PMRpro]

Ah, now there's that word, trust. The one thing my parents knocked out of me when I was growing up and I've struggled with ever since. I am slowly learning x

[InTheMoors]

Hi Groggrim

After weeks of improving I'm having 'one of those days' so my best wishes to you for a quick turn around. I cut my dosage to 8.5 mg on 24/2/25 so that may account for it. I've found that cutting the dosage by half a milligram at a time works best. DL mentioned a pill cutter (I'd never heard of these), so I got one from Amazon for £3.99 - works fine.

[Groggrim in reply to InTheMoors]

Thank you, I will look at the pill cutter

[Groggrim in reply to Groggrim]

there are several @ £3.99. Which one is recommended please?

[DorsetLady PMRGCAuk volunteer in reply to Groggrim]

I used this brand - seems to be one of the better ones

Pillcutter

[Groggrim in reply to DorsetLady]

Thank you Dorset Lady

[InTheMoors in reply to Groggrim]

This is the one that I got - works fine

amazon.co.uk/dp/B09J4FS27K?...

[Groggrim in reply to InTheMoors]

Thank you ITM

[Hopingsail in reply to InTheMoors]

Me too

[Groggrim]

By the way, is clumsiness a symptom? You name it I've either dropped it, spilled it or broken it recently. I seem very poorly coordinated. Half a pint of milk for the custard ended up all over the hob this lunchtime 🙄

[SnazzyD in reply to Groggrim]

Can be but it can be lots of other things. It can be bit of a guessing game half the time.

[PMRpro Ambassador in reply to Groggrim]

Certainly is with PMR, yes!! In the 5 years of PMR without pred I broke so many things and could fall over my own feet. I don't break things - I have full sets of china and glass that were wedding presents 50 years ago!

[Groggrim]

I just accessed my medical records on my Patient Access. On 24th August 2024 I was diagnosed with Polymyalgia Rheumatica. An appointment with my husband's rheumatologist consolidated this diagnosis. So I am on the right treatment for this and shouldn't worry about what different GPs say. I can do what I feel my body is asking of me.

[Body_bonkers]

When I dropped from 7 to 6 it felt like I’d gone cold turkey and stopped taking my Levothyroxine and HRT - felt awful. This all improved with increase in steroid dose and having checked hormones they were all OK. I can only assume it was a shock to the system. I’ve not ventured below the 7mg territory since but suspect it will happen again and can only suggest reducing very slowly

[Groggrim in reply to Body_bonkers]

I know, thank you for your input. As I said to PMRpro I am still in denial,I think, that this thing is real and I need to accept it for my own peace of mind. My upbringing is a bit of a stumbling block at the moment. People here have been very helpful and patient so far.

[Kingcharlesdog in reply to Groggrim]

Hi Groggrim. I have just seen your post. I think you are doing well. I was diagnosed in March 2024 and am on 6 mg . I have been dropping by 0.5 since I was on 10 mg . I am lucky as I was prescribed o.5 mg tablets . I have had to adjust my lifestyle and get frustrated that I have to curtail some activities. But keep your spirits up and be guided by the wonderful people on this forum x

[Groggrim in reply to Kingcharlesdog]

Thank you for your kind words. I'm ok really, just having another mini meltdown. It will pass.

[Bleakley1]

Don’t think it’s anything to do with your thyroid. I have been on Levo for years and the low pred dose I am on at the moment 6mg has not made the thyroid any different which has been stable on 75mg.

I have tried the alternate reducing too and it didn’t work for me so I am sticking with 6mg for now.

[Daffodilia]

Maybe try another deadslow reduction. I try from 6 to 5.5 twice a year and pain and stiffness return after about a month so I go back to 6.

[DorsetLady PMRGCAuk volunteer in reply to Daffodilia]

GG has been advised by endocrinologist to taper this way, so not her choice really.

[Groggrim]

Thank you all for your input. I have emailed my endo this morning to report that the alternate day schedule is not helping me. He is very approachable and I have always been able to contact him. At the end of the day what is important is the dose that works for me which was 7 or 7.5 suggested by my GP some weeks ago. I feel well in myself at 6mg but have a background of myalgia niggling away.