Unwanted side effects : Has anybody suffered with... - PMRGCAuk

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Unwanted side effects

Mmjj profile image
Mmjj
22 Replies

Has anybody suffered with dizziness/vertigowhilst taking predisolone?

Is there an alternative treatment for PMR? I now have osteoporosis and dental issues since taking steroids (aug 21 now reduced to 8mg)

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Mmjj profile image
Mmjj
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PMRpro profile image
PMRproAmbassador

In the UK there is currently no alternative to corticosteroids for managing PMR - there is a biologic drug called tocilizumab/Actemra which does work according to a recently published study from Austria but the large scale clinical trials have not been done and are very unlikely to be done now since the drug is out of patent so the big money can't be made from sales. It isn;t approved for PMR, use of it remains off-label and it is extremely expensive so the NHS doesn't fund it for PMR.

Most adverse effects of pred can be managed or avoided when you know how - I suspect you may already have had bone density loss before pred to be at osteoporosis in only 6 months. Have you had a dexascan? What are the t-scores, do you know? Were you offered medication to protect your bone density?

Some people are unlucky in developing dental problems what sort?

Mmjj profile image
Mmjj in reply to PMRpro

Dexa score of -3.4 (lumber spine) I’m mid way of having a dental implant, dentist was insistent that I wait to take AA until implant is in place, I’m currently taking accrete D3 alongside predisolone and omeprozole

PMRpro profile image
PMRproAmbassador in reply to Mmjj

Fair enough - but to have that low a bone density so soon, it wasn't just pred.

Mmjj profile image
Mmjj in reply to PMRpro

Thankful that I know about it and with treatment I can strengthen and improve score 🥰

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

There was a post last week about similar - healthunlocked.com/pmrgcauk....

If you had put vertigo or dizziness in title you could have seen related posts.

As you are in US, there may be other opinions, but realistically Pred is the only proven treatment for PMR.

Mmjj profile image
Mmjj in reply to DorsetLady

Thankyou will have a look 🥰

piglette profile image
piglette

I have had dizziness with pred and have fainted several times. I thought it was due to my adrenal glands complaining about having to start working again.

HeronNS profile image
HeronNS

I had some not quite dizziness, lightheadedness more like, but not when first on pred. It happened when I increased my dose to deal with a flare. Since my dose is now below 5 mg again the events have vanished.

You can do a lot to improve your bones. First of all, before your doctor prescribes any bone meds please get them to test you for all possible secondary causes. Pred does have its biggest effect on the bones in the first six months or so of treatment. After a year or so the effect lessens. If you do find you need to take a medication be sure you read up on whatever is offered to make sure it is what you want. They all have side effects.

Make sure you don't take your calcium and prednisone together at the same time of day. They interfere with each other. Apparently taking calcium with a little yoghurt helps with absorption. As well as Vitamin D you also should take Vitamin K2 (not K1). And if you can manage it, weightbearing exercise, even a daily walk, is super important to maintain and improve bone density.

Here are a couple of links to sites that may help.

My story: healthunlocked.com/pmrgcauk...

And secondary causes of osteoporosis: osteoporosis.ca/medical-con...

Effect of corticosteroids on bone density: health.ny.gov/publications/...

Grammy80 profile image
Grammy80

I have suffered with it, but had before prednisone. There are exercises you can do to help it.

Here is a link you may find helpful, I did. If not them maybe your doctor can send you to someone who does this:

youtube.com/results?search_...

I'm in the states and places that do soft-tissue massage also do this. Hope it helps.💕

jobyway profile image
jobyway

Hullo, Not sure if you're checking your blood pressure? I hadn't realised that prednisalone could raise blood pressure and found myself dizzy when getting up from kneeling.

PMRpro profile image
PMRproAmbassador in reply to jobyway

Which is much more likely to be postural hypotension - your BP not keeping up with your change of position and being a bit low when you get to standing.

Mmjj profile image
Mmjj in reply to jobyway

Blood pressure is good

PMRpro profile image
PMRproAmbassador in reply to Mmjj

Have you checked it sitting and immediately after standing? It can look fine on occasional measurement but unless you check it in a particular situation it could be all over the place.

I was having dizzy spells - often when going from outside into a warm shop but not always, I had a 24 hour Holter BP monitor which takes BP automatically every 1/2 hour in the day, hourly at night, It so happened it started measuring just as I went into the baker from minus something outside - and I had an "episode". Every other BP measurement was textbook normal. For that single measurement it had plunged to about 80/40 - no wonder I felt ill!!! No sign of why then - but much later I was diagnosed with an arrythmia and I was having bradycardias (periods of slow heart beat) where sometimes my heart didn't beat for 7 seconds or so. Plenty to cause a dizzy spell.

Mmjj profile image
Mmjj in reply to PMRpro

I’ve been doing it several times a day but will for the next week take it every hour and see if something shows up, the dizziness is more positional, looking up or down laying down flat is a big problem

PMRpro profile image
PMRproAmbassador in reply to Mmjj

That's my point - it isn't frequency that matters so much as it being done when whatever it is is happening.

But BPPV is a very real possibility from what you say:

betterhealth.vic.gov.au/hea...

Uglow profile image
Uglow

I suffered terrible but am never sure if steroids PMR or other drugs. I have osteoporosis to. It’s chaos in my body 😂😂😩😩the dizziness is awful when I get as hard as physical. I get truly desperate. It’s so odd some days I don’t get it and I have no idea why. I have just had 3 teeth out 2 fillings and a denture I hate it feels like a brick in my mouth. Iv been told I have to keep in for 3 days and sleep with until gums settle. I totally feel your pain Mmjj.

Uglow profile image
Uglow

I had to have teeth out as I was scared of infection from decay! I will persevere and hope my beautiful smile returns 😂😂😂😂

YorkieShowBreed profile image
YorkieShowBreed

I had dizziness when I came off it completely for about 5 days then it went away. I was on it three years and down to 1 mg. I’ve been off it three weeks now and other than some slight pain in my left knee I am doing fine. The dizziness took me by surprise though.

Mmjj profile image
Mmjj in reply to YorkieShowBreed

Oooh that sounds promising

YorkieShowBreed profile image
YorkieShowBreed in reply to Mmjj

Yeah, Doctors could not control my BP on the prednisone. It suddenly spiked to 226/88 so he told me to get off it and see. I bought a home PB cuff at my local pharmacy and its down to 150/70 now, so I am going back Monday to get on a BP medicine.

Rostom profile image
Rostom

I was very dizzy/lightheaded for around two months after PMR diagnosis and treatment (presumably the prednisolone).

I read that this was caused by the medication and there was probably not another problem, so tried not to worry.....

The feelings slowly dissipated after a couple of months and now no longer bother me but it is a horrible feeling and I had to be very careful that I didn't fall over, particularly when changing direction.

I have had a few episodes of vertigo, something I would not wish on my worst enemy! Compared to those, the dizziness was a walk in the park but still unpleasant and unsettling. However it has now gone.

I hope your dental problems can all be resolved soon. Dental pain can be very debilitating. Hopefully you will feel less pain and soon be used to your denture ... I wish you well.

Maudie19 profile image
Maudie19

I did have dreadful vertigo and dizziness when I first start on pred but once they took me off my blood pressure reducing tablet it disappeared. However, now I am trying to taper, and having problems at 9.5mg, my vertigo is starting slightly, especially when I lie down first thing at bedtime. I just keep still and it disappears. But when I get up in the morning I have to sit on bed until it clears. No dental problems so far!!

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