Reducing Pred

[Purplegloss]

Yesterday I was very tired, and actually fell asleep sat at my computer which is not like me. I have had a bit of a stiff neck for a few days and have tried changing pillows to see if this helped or not. I am currently going down from 4 to 3.5 mg by the slow method, but this morning when I got up I had a very strange sensation in my head at the back on the left side. It felt as though my brain was shaking and I felt very disorientated. It happened whether I was standing or sitting, and was quite scary, so much so that I was about to phone 111. However I took my 4mg tablets and sat still for a while and it appears to be ok now. Is this normal?

[jinasc]

I don't know if it is 'normal'. What I do know is that I must sit up from lying down before I stand up.

However a Pillow problem I had was solved when I bought a GX Pillow. It worked and I have bought two more.

Mrs Nails tried them and she found, like me, a long standing waking up with a neck ache etc was no more.

They are an engineered pillow follow this link and here is the story of how and why:-

gxpillows.co.uk/pages/our-s...

BTW the way I bought the two one Medium Firm and one Medium Soft. I prefer the medium firm but we are all different and I do use both at times.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Ive got them as well.. as you say, not cheap, but worth it!

[jinasc in reply to DorsetLady]

Ah - I am so pleased they suit you...........now I know - watch this space.😈😈

[DorsetLady PMRGCAuk volunteer]

Not for PMR, fatigue could be adrenals, but any new symptoms relating to head or neck really should be checked out. If it were me, I'd be ringing 111 to get some advice..it may be nothing, but at least then you would know....and if you do, please let us know..

[PMRpro Ambassador]

Well, I wouldn't say it is "normal" - it may happen. Not the same thing.

If it were me I would not continue with the taper and see if it happens at 4mg. And if it does happen again, get medical advice immediately. In my book, it would warrant a 999 call.

And pillows can be evil things ...

[SheffieldJane]

I would seek medical advice for this “funny turn”. It could be an early warning of something significant. Like a trapped nerve in the neck for instance. My mother in law would actually black - out with cervical Spondylosis. Obviously you are in Adrenal shortage territory, this can play havoc with how you feel. Get medical advice and let us know. Expect a few hurdles before you get near a specialist.

[Purplegloss in reply to SheffieldJane]

Thanks everyone. Just phoned 111 and awaiting an out of hours doctor to call as it started up again.

[PMRpro Ambassador in reply to Purplegloss]

If it happens again while you are waiting - don't hesitate to call 999. 111 can be a tad dilatory ...

[SnazzyD]

When my adrenal glands were sluggish I felt grim in the mornings like a body tremor and feeling hungover. The neck might be because you are sleeping heavily because you are so tired. However, I’d also say it would be chatting to a doc. When my GCA was in its early days, I woke up feeling weird with pain or odd sensation at the back of my head. It wore off by the time I’d had breakfast until the GCA galloped along at the end.

[piglette]

It sounds very like your adrenal glands are a bit unhappy about waking up. I am not able to watch a half hour TV programme without falling asleep. I have resorted to taping everything but then I don’t know when I fell asleep so spend ages searching through!!!

[Purplegloss in reply to piglette]

Hi everyone, feeling much better today after a good nights sleep. 111 Doctor never did get back to me with a phone call, although I did receive a call back from the call centre at 5pm saying how very busy they were. It was quite a scary day as I felt very disorientated every time I got this spasm like feeling in my head. Well today I have come to the conclusion that following the very stiff neck I have had lately I must have trapped a nerve that was causing the problem. Did the shop Friday, and some of the bags were quite heavy, so I will be getting my trolley out from now on. Being as I am quite low dose on my Pred now I did wonder if it was some sort of adrenal problem, as I am on the look out incase I get a problem, but I guess not this time. Taking it easy today. Thanks for your help.

[Purplegloss in reply to Purplegloss]

111 Doctor called me Sunday evening, and we discussed the problem I have been having with my head, and she wanted to send a Doctor to me that evening. However although I still had the spasm type feeling shooting up my head, it was less so than Saturday, and I contacted my local GP practise who got a Doctor to phone me Monday afternoon. He didn't really have any explanation for me though. I took a couple of pain killers last night to help with my stiff neck problem which is much better today, so will do the same tonight. I no longer think it is anything to do with a trapped nerve though, and think it may be due to steroid reduction. Today my shake in my head is still happening, but it is not now at the back of my head, but just generally inside somewhere. Happens about every two hours, but doesn't seem to happen when I am asleep. I have my regular three month blood test booked for next Tuesday.

[DorsetLady PMRGCAuk volunteer in reply to Purplegloss]

So, in general not much further forward then ? Might be worth taking painkillers morning and evening-just to see if any difference

[Purplegloss in reply to DorsetLady]

I have just looked at the Healthline website, and one of the more severe side effects of long-term taking Lansoprazole is tremors (jerking movements or shaking) doesn't say head though. I have been taking 30mg of this tablet for 4.5 years now, and wonder if it could be the problem.

[DorsetLady PMRGCAuk volunteer in reply to Purplegloss]

It might be -don’t think anyone had mentioned that before -but as we know, never say never. Might be worth discussing with GP and seeing if you could transfer to another PPI if you still need require one, or coming off altogether - although need to taper off rather than just stop.

[PMRpro Ambassador in reply to DorsetLady]

Or an H2-antagonist - famotidine or cimetidine probably. Different mechanism of action so potentially different adverse effects.

[Purplegloss in reply to PMRpro]

Thanks for your replies. As it is still happening, I have managed to get an appointment to see a Doctor Friday morning to get checked out. Just had 5 of these spasms straight off having not had one since 8am this morning, so I took my blood pressure just after, and it is pretty good at 135/63 however pulse was 83, which is a bit high. Just wish I knew what was going on!

[DorsetLady PMRGCAuk volunteer in reply to Purplegloss]

Sure you do wish to know what’s going on, please keep us informed…but if things do escalate out if GP hours please ring 111…

[Purplegloss in reply to DorsetLady]

Just back from my Doctor's appointment, and she checked me over very well, and listened to what has been going on with my head problems that started last Saturday. I am still having a problem, but it is more like a throbbing in my head now, but still a bit of a worry for me, as nothing like this has happened before. She wanted to wait for my blood test results, which I have on Tuesday, but meanwhile has put me on some tablets called Prochlorperaxine 5mg three times a day to see if it helps me. They are ok with Pred apparently and are like a kind of sea sickness tablet. I asked if a scan on my head would be useful, but in today's climate this would take a very long time to happen, so I said in that case to put my mind at rest I would have a referral and scan done privately, which she is arranging. It was good to talk to a Dr face to face!

[DorsetLady PMRGCAuk volunteer in reply to Purplegloss]

Thanks for update -hope the meds she prescribed work-but sure you’ll let us know either way.,

[Purplegloss in reply to DorsetLady]

Hi all, me again on the same topic, but I am quite worried about the problem with my head, and I can feel the pulse like feeling now whilst I am typing this. I do wonder if it is to do with my current decrease in Pred which I started on 1st March by the DSNS method going from 4 to 3.5. In some ways I hope it is, and nothing more serious. If I am having a flare then it is nothing like my usual ones I have had in the past when I could barely get out of bed. I do have some areas of pain, stiff neck, and pain in the centre of my back between my shoulder blades, and my left collarbone. These aches are not too bad once I am out of bed. I am having my normal 3 monthly blood test on Tuesday and last time my CRP was 15 and my ESR was 2, so hoping this will tell me what I should do. If I do have to go up again what should I go to, and for how long. Meanwhile I am waiting for a referral to find out what is happening with my head, all a bit of a worry really.

[DorsetLady PMRGCAuk volunteer in reply to Purplegloss]

Could be reduction, but as you say, if it's different to usual steroid withdrawal then it's always a worry.

I shouldn't worry about changing dose until you get results of blood tests, obviously if they have gone up, then you may need think about increasing...but I wouldn't pre-empt as yet, although maybe don't reduce any further in the meanwhile.

[Purplegloss in reply to DorsetLady]

Just got the results of my three-monthly blood test, last time in December CRP was 15 and ESR was 2. This time I had a test for my Vitamin D levels as well as they had been abnormal a few months earlier. ESR this time 6 and CRP 19, so I am happy with that although it has gone up a little bit, however no aches and pains, so I plan to continue going down from 4mg to 3.5mg, I am halfway through using the DSNS method. However I don't understand some of what is on the results, so will type it out as it is written on my record. " Serum total 25-hydroxy vitamin D level 149nmol/L 25-OH vitamin D thresholds (National Osteoporosis Society Guidelines 2019) <25 nmol/L consistent with deficiency, consider treatment if raised PTH, fragility fracture, osteoporosis, medication with anticonvulsants/glucocorticoids/antiresorptives/malabsorption or dark skin, >50 nmol/L Adequate level. >374 nmol/L Toxicity possible consider dose reduction. >750 nmol/L Toxicity dose reduction recommended" I am currently taking Vitamin D 4000 and K2. Should I move to taking Vitamin D 400 instead? By the way I am still having problems with my head intermittently, and get a pulsing in my head sometimes as many as 10 times this morning at a time, which is quite disorientating. Good news is I have managed to get a private appointment with a consultant two weeks today to try and find out what is going on.

[DorsetLady PMRGCAuk volunteer in reply to Purplegloss]

PMRpro is probably best one to explain results sure she’s will read your reply sometime today…although both inflammation markers have risen slightly so perhaps a cause for further investigation.

I’m sure the head issues are disconcerting hopefully your appointment will give some answers…

[PMRpro Ambassador in reply to Purplegloss]

I'd drop your vit D dose to 2000 - you are in a fairly good place at present and well under the possible toxicity level but going down to 400 might be too far.

"Serum total 25-hydroxy vitamin D level 149nmol/L " is your result - the rest is the explanation of what that result means. Above 50 is considered adequate so you are well above that. That isn't the same as optimum though!

There is a slight trend for the ESR and CRP to be rising. I'd want them checked sooner than 3 months and I wouldn't reduce any further at present. But that's me. The numbers can lag a long way behind the symptoms.

[Purplegloss in reply to PMRpro]

Thanks very much for your replies, and I will take it on board. I have already ordered some 1000 vitamin D and will take two each day as they only had 2200 online. Do you think this could be affecting my head pulsing away like it is? I guess I will find out once I am on the lower dose. Do you know what PTH means PMRpro please? Thanks.

[PMRpro Ambassador in reply to Purplegloss]

Parathyroid hormone

medlineplus.gov/lab-tests/p....

explains it all

[Purplegloss in reply to PMRpro]

Thank you!