Any ideas please.

[Cosmos22Marigold]

Hi all.

I'm 15 months down the line from my first diagnosis of PMR and put on 20 mgs of preds. I have been following the problems and answers on this wonderful site but need advice please. I am now down to 5.5/5 mgs on dorset lady slow tapering(thank you dorset lady) and its been going reasonable till this last week when i am now experiencing some weakness in my legs, bad vision, anxiety, giddyness etc. I feel fine when i sit down but as soon as i sart to prepare a meal or do something it all starts. Wondering if i should go up on the preds or could it be adrenal glands kicking in and is this what you experience. Your advice would be appreciated. I have had MRI scan all clear. I have had an echocardiogram - all clear. Cateracts both done. All of which i am very grateful but dont know what way to go now with these bad feelings. Just hope I'm not going backwards.

[SnazzyD]

Hello, these sorts of symptoms occur when your adrenals are not kicking. When they are kicking in you feel fine and dandy. But other things can cause this? Does this happen every time when you get up now? Is your blood pressure low? Are you on a low salt diet from higher doses of Pred? Have you had any increase in activity or stress recently?

[Cosmos22Marigold in reply to SnazzyD]

Oh!! Didnt realise that they may have not kicked in. I have cut down on salt as my husband is supposed to cut out all salt which i now cut out salt in my cooking. I dont like it but thought it would be good for me too. I think my blood pressure is ok but the nurse did tell me i have trouble with my white and red cells so i have to check in 6 weeks time. Maybe i should get it checked earlier.

[SnazzyD in reply to Cosmos22Marigold]

The adrenal glands switch off because you are swamped in artificial cortisol so they don’t need to work . There comes a point when the Pred is too low for daily function but still a bit too high for the adrenal axis, as it’s called, to get the message. Poor adrenal function can cause low sodium levels. I had to reintroduce salt into my diet after cutting it out because higher cortisol/cortisone causes retention of sodium. It’s all a delicate balance. If you have been having a very low salt diet for whatever reason, it might be worth trying to up it a little, don’t go mad, and see if it helps. It might be worth getting a blood pressure machine to check your b/p at home when you have these do’s. As for “having trouble” with your white and red cells, you need some details. How much trouble? high or low? and the main question is why? Having trouble as a long term explanation is not good enough really.

Are you having these episodes every time you stand up?

[Cosmos22Marigold in reply to SnazzyD]

No,, not every time but quite often. I do have a BP monitor so i will take it more often and see how it goes. Nurse said i have more white cells but being as i have had this right through PMR she will keep an eye on it. I have a new dr now as i changed surgeries after 10 months of never seeing a dr. That is why she wants me to have another check in 6 weeks. I will ask her more about it and why its happening. l learnt more from this forum and so pleased i got on to it. So helpful.

[SnazzyD in reply to Cosmos22Marigold]

Pred does cause an increase in Neutrophils, one of the white cells. This is quite normal but it is a question of degree and also that effect does reduce as the dose drops. She is right to recheck.

[Cosmos22Marigold in reply to SnazzyD]

Thanks. So reassuring.

[HeronNS in reply to Cosmos22Marigold]

Just so you know, pred can cause elevated white blood cells.

I had the experience of low salt causing a number of apparently unrelated problems. The symptom which a passing acquaintance picked up on and suggested I needed more salt was always waking up with a headache. To increase my salt intake at the time I simply took it by tiny bits on my fingertip. The secret I learned then was if salt tastes good, almost sweet, my acquaintance said, it meant I needed more. I should keep on taking tiny bits until it didn't taste good any more. I didn't get to that point at dinner, where we were that night, having that conversation. But the following evening tried it again, and after a short time it suddenly tasted horrible, so that was the signal I'd had enough. This technique will not work with salty foods. I now salt my food, which I hadn't before, and think what tipped me over the edge was when I started taking pred I also cut out almost all prepared foods which tend to have too much salt. Other than that I'd eaten low salt all my adult life. Took the salt shaker off the table early in married life, and cut it back as an ingredient in recipes. Recent blood tests show my sodium level is normal, but of course it was never checked when I was having the period of weird symptoms.

[Cosmos22Marigold in reply to HeronNS]

Sounds so like it could be that as i have cut down so much lately due to my husbands problems. I'll give it a try. Many thanks.

[piglette]

I find I have dizziness when making a meal for example and have to sit down in the middle of making it. I am also unbelievably tired. I am blaming it on the adrenal glands.

[HeronNS in reply to piglette]

I complained about sudden moments of lightheadness and that was why my doctor sent me for the cortisol test, also my blood pressure is suddenly too high, although I don't think I'm consuming too much salt now! To my surprise, as I have lowered my pred dose these episodes have gradually stopped occurring, and my test showed normal level of "morning cortisol." Of course I forgot to ask him about the blood pressure issue when we had a somewhat disjointed phone appointment (he's homeschooling, and at the time was isolating because of a covid exposure), so I don't know what the next step will be. I checked it at the supermarket machine this morning and the higher number is way too high and the lower one just edging up into too high, so I am worried. I think it was insignificantly lower than when the doctor checked it.

[piglette in reply to HeronNS]

I have got a BP monitor at home, so easy to take. My BP is usually on the low side which could also causes dizziness. When I suggested adrenal glands to my GP he continued looking at his computer screen and just grunted.

[HeronNS in reply to piglette]

Perhaps I'll have to consider something like that. I've always shied away from medical devices, not even sure we have a thermometer! I'm familiar with the low blood pressure dizziness, as in when you get up too quickly and your blood doesn;t keep up with your head. What I'd been experiencing last summer and fall would come on out of the blue, either when I was just sitting quietly (?why) or after I'd been exerting myself, like walking briskly or climbing several flights of stairs, and then coming to a stop, such as having to wait for a crosswalk light. Definitely much less frequent since pred dose down again.

[PMRpro Ambassador in reply to HeronNS]

Could fit with an arrythmia - the early episodes I had were like waves breaking over me and would happen while sitting or doing something. Of course the effects while standing/walking were more dramatic but never happened while a recording monitor was on!

[HeronNS in reply to PMRpro]

A feeling that I was going to lose consciousness and that I needed to hold onto something so I didn't fall, something like that. When a person is dizzy it's like the world is moving. In this case it was more like I was aware the issue was in my own body. If that makes any sense.

[PMRpro Ambassador in reply to HeronNS]

It does - that's sort of how I felt, wasn't dizziness as such, more a feeling things receded and came back ...

[HeronNS in reply to PMRpro]

😨

[piglette in reply to HeronNS]

I must admit I don’t think I have ever had the problem of getting up too fast and feeling dizzy, probably I don’t move fast enough! My blood pressure does suddenly drops if I am hungry or in pain, spasmodically. I think my current problem is not like that though, seems much more adrenal gland related as I have the deathly fatigue too.

[HeronNS in reply to piglette]

What I described is something I've always experienced, from childhood on!

[Cosmos22Marigold in reply to piglette]

So easy to do isnt it. I always look for answers to all these problems and like everyone i dont want to go backwards. Thanks.

[PMRpro Ambassador]

Talking about the adrenal glands "kicking in" is misleading - it doesn't happen all at once, it happens gradually over a period of weeks and months. The longer you have been on pred and the older you are, the longer it can take.

Snazzy has said everything else I can think of ...

[tangocharlie]

I had similar symptoms when I had adrenal problems: dizziness, BP dropped when I stood up, severe fatigue, sudden rapid weight loss, so it could well be that. Definitely something to discuss with your GP as it could also be other things. If things get really bad, if you start vomiting or feel worse, go to A&E (or ring 111 first and explain the situation).

[Cosmos22Marigold in reply to tangocharlie]

Thanks. Will do.

[Avadip12]

Well I have just sat down as I am experiencing exactly one of these episodes. I have been trying to lower my pred down past 5 mgs on and off for about 8 yrs. I recently went for the synatchen blood test to see if my adrenal glands are working, and they were fine. I am now at a total loss as to why I get these terrible bouts of total fatigue, tinnitus, weakness on standing and poor cognitive processing. Don’t get me wrong, I do push through this and get on a long walk , the power and strength is there , but it’s the constant psyching yourself up to get on and push hard . That is exhausting in its self . So Sorry got no answer for you let along myself. Hope it passes for you.

[PMRpro Ambassador in reply to Avadip12]

Just because the synacthen test shows that your adrenal glands can produce cortisol when kicked hard, does NOT mean they are doing that reliably day to day. The whole feedback process is a very complex, multi-level process - any one point can be wobbly and cause a failure. But I get you about the always pushing yourself getting too much. Not really PMR-related, but it stopped me doing a lot of things I could have, should have, been doing the last few years.

[Avadip12 in reply to PMRpro]

I just don’t know anymore why I can feel so dreadful some days , not able to get off sofa . Then 4 days later I have some good energy, a clear head no tinnitus, then following week back on the sofa again. ??

[PMRpro Ambassador in reply to Avadip12]

Try keeping a diary so you can see how your good and bad days relate to other things - like activity, other stresses, what you ate/drank. It can be quite enlightening.

[Cosmos22Marigold in reply to PMRpro]

I do keep a diary every day about how i feel but i dont put down what i eat and drink so will do that and see if anything relates to my bad days. Good idea and thanks. My stress is obviously my husband and caring for him and loosing my brother and sister in law within 12 weeks of each other was the start of my pmr i think. I had cared for them on and off for 4 years previous. So many people have had similar happenings due to covid. Only my SIL was covid. Brother was 2 strokes then he caught covid in hospital and with no visits from us for 4 months it must have been awful for him too such a worry. I will watch how i go with a food diary so thanks for that idea.

[Cosmos22Marigold in reply to Avadip12]

Its an upward battle isnt it. I think i would give up some days but as i care for my husband i suppose it keeps me going but it is hard. He doesnt realise how this pmr affects you and he has problems of his own. I would like to thank everyone for their comments. So helpful and reassuring.