Prednisone dude effects

[Athena2020]

Hello can anyone tell me if they have frequent urination , fast heart beat , Shortness of breath and sweating with prednisone ?

[alvertta]

Yes. Prednisone makes you feel strange. I take a beta blocker now for fast heart rate. My resting rate was 68 before prednisone. After was 98. Now on beta blocker back into the 68 to 70 range. Still sweat a lot. Love to swim. Makes me feel better. I see a cardiologist on a regular basis plus rheumatologist.

[Athena2020 in reply to alvertta]

Do you have shortness of breath as well

[alvertta in reply to Athena2020]

Not really. I am overweight and not too fit any more. I try to swim to stay fit. Exercise in the heat is not good for me. Sweat.

[Tahiri in reply to alvertta]

I have periods of breathlessness also ,hair loss and peripheral neuropathy. I was delighted to get down to 6 mg but the blood tests came back at ESR 45 so I was told to increase to 7 mg. Then the headaches returned, and no- one answered my calls for advice. I decided to increase to 10 mg and told the Rheumy nurse what I’d done. She spoke to the Rheumatologist and he was appalled, telling me that headaches are normal until the increased dose settles. I’d gone up too far - now have to wait a month to reduce by 1mg and when I get to 7mg , only half a mg every 6 weeks. Terrible that the advice was not available when it was needed.By the way I have. GCA but also Quadroparesis and a severe spinal injury , but I’m still partly mobile.

[Athena2020 in reply to Tahiri]

That’s terrible that you could not get the advice you needed it , unfortunately these Drs are not available to speak too.

Thank you so much for your reply and input it helps when you connect with others . You feel you are not alone.

[PMRpro Ambassador]

Yup - probably most of us to some extent. But not just dudes

And sometimes it isn't just the pred. Pred can cause shortness of breath - but so can PMR. Even though the pred is managing the inflammation, the underlying autoimmune disorder is still active in the background. It attacks the tissues and leaves them intolerant of exercise - they struggle to get enough oxygen and that makes you breathless. The autoimmune part of the PMR can cause problems with the electrical cells in the heart that govern heart rate - leading to tachycardia (fast heart rate) and palpitations which are due to an arrythmia. Sweating can also be due to the a/i disorder - but also the pred. And sometimes both.

[Athena2020 in reply to PMRpro]

Thank you

[Viv54 in reply to PMRpro]

Something else ive learnt today ! Such wise words ! I thank you once again, as my breathing was strange yesterday and was thinking i was over thinking , if you get my drift !

[PMRpro Ambassador in reply to Viv54]

And once you over-think - the breathing effects increase.

[Enfin in reply to PMRpro]

Should’ve put my glasses on ... I misread ‘sweating’ as ‘swearing’! It made sense to me 😉

[PMRpro Ambassador in reply to Enfin]

It would me too - quite a lot of people have talked about PMR tourettes and it is always a sign of a flare for me!!!!!

[AnniesRyder5 in reply to PMRpro]

I also sweat a lot more - reminiscent of menopausal symptoms. But a new negative effect for me is on my hair. I have always had lots of shiny healthy hair. After 6 months on pred my hair has become lifeless, thin and dull. Is this a normal side effect - hopefully to disappear if and when I come off pred?

Something else bothering me is the GP’s recommendation for coming off the pred. I have been reducing by 1mg per month and I’m now down to 6 mg.

I shall have to contact him when I’m down to 5mg because I am a little nervous about getting to zero without any tests.

[PMRpro Ambassador in reply to AnniesRyder5]

In 6 months your hair may also be experiencing the effects of being ill as well - illness negatively affects hair and the effects take a few months to be seen. Mine changed but that was as much the PMR as anything else - I had 5 years of it without being on pred. It did go haywire (in every sense) while I was on methyl pred but even that was a few months before you saw it as it grew in. But it went back to almost normal within a few months when I switched to prednisone - it isn't as it was 15 years ago pre-PMR but well cut it is good. The biggest problem has been replacing the hairdresser I had then!

What is bothering you about coming off the pred? What did the GP say originally? The criterion is that the PMR symptoms do not return - blood tests won't replace that. They may look OK but you can be having a flare. You would probably be better slowing the rate from 5mg, no reduction step should be more than 10% of the current dose and it will be 20% by then if you continue 1mg at a time. OTOH - if it works then its fine. To be at 6mg after 6 months is pretty good, maybe it will continue.

[AnniesRyder5 in reply to PMRpro]

Thank you I always appreciate your advice😊

[Dydee in reply to PMRpro]

Wow, that sheds a whole lot of light on things. I thought my increased heart rate was leftover from my bout with Covid that hit me 10 days after starting Pred. I also have had afib a couple of times. I am also usually 68 beats but have been running at 92. Should I be concerned? My cardio. wants me to do a stress test but now I'm thinking I should perhaps wait? Surely the affects of the Pred. on the heart go away once I am off of steroids?

[PMRpro Ambassador in reply to Dydee]

You can't assume it is the pred - afib is afib and needs some management if only an anticoagulant to reduce the risk of stroke. Mine isn't due to pred, it is due to something called sick sinus syndrome and in my case that is due to the autoimmune part of PMR having damaged the electrical cells in the heart that govern heart rate. It is unlikely to go even if I do get off pred. You need to listen to the cardio - not least because Covid is now known to cause adverse effects in many organ systems in the body including the heart and those will need ongoing management.

[Dydee in reply to PMRpro]

I understand your point. And yes, Covid could have caused long term heart affects. So will follow up with the stress test. I do take a baby aspirin every day as he instructed. Thank You PMRpro!

[SheffieldJane]

I went through phases of symptoms over a 4 year period, including all of these. Please ensure that your blood pressure is normal and report anything worrying to your doctor. The side effects can be benign, or something that requires treatment.

[Athena2020 in reply to SheffieldJane]

Thank you

[Athena2020]

Thank you for your reply

[Bcol]

No idea whether it's the PMR or the Pred but can definitely sympathise with the urination and sweating. Like Alvertta my resting heart rate was in the middle 50's but since the arrival of Pred it is now in the upper 60's. Peter

[nickm001]

As a dude I can confirm that PMR ( not pred) may impact your prostate inflammation and it may increase PSA numbers and frequency of urination.

As far as fast heart beat, I think it is individual and depends on your fitness level. Same goes for shortness of breath. For example my resting HR is ~ 40 (used to be even lower) and I would need to be doing something really invigorating to get it over 100...Shortness of breath happens when you push your level of activity beyond aerobic level, usually about 80-90% of the max HR, but that threshold may become much lower if fitness level and/or other condition (PMR) limit oxygen supply to muscles. Raising threshold level is ultimate goal of interval training that athletes do.

[bakingD]

Yes for frequent urination and sweating!

[DogAgilityObsessed]

Frequent and also sudden urination. Forever having to drop my knickers while out walking! (Fortunately it’s pretty deserted round here)

[Dewdrop456 in reply to DogAgilityObsessed]

Me too !didn’t even make it to behind a bush last week!!

[Viv54]

Guilty to the above !! Plus many more ! This is my second time on Pred , the last time my dose was 20mgs. ,sadly this time around im now on 40mgs this is my 5th week, ! All the symptoms you have are very common. Because my dose has doubled so have the symptoms. Dont get me on the hot flushes plus feeling like i have a heater attached to my body! A glimmer of hope is , that as the dose lowers, so do the symptoms. Great to read the posts on here, so many people experience Pred in their on way! I have felt so much better in when in awful pain you see your not alone ! To think i nearly missed this wonderful site ! Chin up things will get better. Best wishes Viv x

[Chrisellie]

Yes to the sweats and urination rate.

I started the sweats a month or so pre diagnosis. I thought it strange at the time.

Unfortunately I am still having the sweats but, thankfully, they never went to the soaking wet stage and only throughout the day, not through the night.

I had finished menopause over 5 years prior to this.

[pinks33]

In the early days of high dose pred I experienced the fast heartbeat. It felt like my heart was trying to jump right out of my chest. Very scary at times. I had an ECG which was normal, and my GP seemed unconcerned. It disappeared completely as I reduced the dose. I'm back on a high dose now after a flare, but so far no dancing heart.

[mtrafter]

Yes to all, over the last 3 or so years except the sweats, certainly get hot especially around 3 am, breathless and palpitations plus headaches on exertion mainly when reducing to a too low a level of pred for my symptoms.

Have had Cardio investigations twice but all clear. Had been very comfortable on 6.5 but Rheumatologist insisted I reduce after 18mths on same dose(had tried several times) finally got to 5mg 6mths ago but it was too low have put myself back to 6.5 after 6wks of agony. All my breathlessness, headaches and palpitations have now gone but not the nightime hot flushes( I am well past menopause!) Its such a baffling disease our journeys are all so different.

[petros1931]

i would recommend being a pulse-oximeter to keep an eye on your oxygen saturation level, especially when you are actually breathless. They are inexpensive online and at chemists. From experience I also recommend deep breathing exercises to help increasing your oxygen in the lungs. There are very good examples online.

[Fifelassieo]

I had frequent urination when l was on higher doze, since l have came down the urine is less, it started getting less around 5mg

[Athena2020 in reply to Fifelassieo]

Thank you

[PMRCanada]

I certainly have frequent urination and sweating from about 4am-8am. No shortness of breath though.

[Kendrew]

Agree with all above. Frequent need to urinate....mainly during the night. Already suffered from palpitations (persistent ectopic beats) pre-diagnosis, and pred made them more regular and more intense so now on a beta blocker (propranolol) and suffer hot flushes regularly......after 7yrs of menopausal flushes, that had finally ended.....I have them again! Haha! Just my luck!

[Kendrew]

Oh......and breathlessness too!

[Athena2020 in reply to Kendrew]

Too many side affects the shortness of breath is so uncomfortable. Pounding heart ... sweating just awful .

[Athena2020]

I do not the greatest on Prednisone. Too many side affects the shortness of breath Is very uncomfortable. Thank you for your reply

[Kendrew]

I knew pred could have many side effects. Just didn't expect to suffer so many......and to feel so poorly some days. Been very scary at times but getting familiar with condition now and feel I'm beginning to manage it better......with a little help from my friends!

[PMRpro Ambassador in reply to Kendrew]

A lot CAN be mitigated when you know how. And I can say from bitter experience that a lot of the effects blamed on pred can occur as a result of PMR itself.

[Kendrew in reply to PMRpro]

I didn't realise that fully at first if I'm completely honest. You tend to think all the varied and unpleasant symptoms are as a result of the steroids and not the underlying condition. It can all be so confusing when trying to unravel the mystery of it all.

[Kendrew]

I'm an ex nurse so know a little bit about steroids and what insidious drugs they can be. However, I've realised very quickly that I've still much to learn about both the drugs and the condition...and that even some of what I thought I knew to be true, is either incorrect or out of date. I'm so thankful for the education and insight this forum has given me regarding these issues. I felt a little concerned at your use of pred for other medical issues, knowing what I know now, as they're not something you should take longer than necessary...'necessary' being the important word here! I now know having PMR/GCA, means taking steroids is not about getting off them as quickly as possible, but about taking the correct dose that keeps your symptoms under control for as long as you need to. I hadn't realised that the taper has to be extremely gradual in order to give your adrenals time to 'fire up' again so coming off them can be a bit tricky. I don't know your medical status st the moment and there are people far better qualified to advise you than me on this forum, but there are some very good tapering strategies you could look at if it's appropriate for you. I'm about to follow PMRPro's DSNS regime.

[Kendrew]

That's very interesting....I've been lucky enough to minimise a few of the possible side effects with healthy diet, moderate exercise, regular meal times....all which have kept my hunger at bay, kept my weight down (not put any on) and this in turn has so far maintained normal blood sugar levels, stable cholesterol level and normal blood pressure. However, I know I'm fortunate and that this could change any time. I also know different regimes work for different people. You clearly have some complex medical issues and you obviously must do what works for you. Just wish I could sort out some of the other 'stuff'!

I haven't heard of any new tapering strategies but would definitely be interested to know more. Wishing you all the best.

[Bcol in reply to Kendrew]

Hi Kendrew, Tapering plans, various at link below

healthunlocked.com/pmrgcauk...

[Kendrew in reply to Bcol]

Thankyou so much Bcol for the tapering plans. I was aware of those ones and about to start the DSNS regime myself. DadCue spoke about a new treatment plan for tapering he'd tried but it was unlikely to be offered a y time soon. I was wondering what that was. Thankyou again though.

[Kendrew]

Ok. Thanks for the clarification. Sorry....I misunderstood what you were saying.

[Kendrew in reply to Kendrew]

I guess it's fair to say you're not a typical PMR patient then, as you have PMR type symptoms but the cause is from other health issues?

[Creamtea]

Hello,

Yes I have frequency of urination and urgency, which is very embarrassing. Thought it might be an antihypertensive that dr prescribed. Possibly pred too.

Night sweats are frequent and hair loss. Have had my hair cut short and as reducing pred seems to be lessening.

[Athena2020 in reply to Creamtea]

Hello thank you for your reply . What dose are you on, I am on 12.5 mg

[Creamtea]

I have just commenced a month of 7.5mg. I am also taking Leflunamide 20mgs weekly which also has the side effect of hair loss.

[Lollybygolly]

I have the same dilemma: having reduced to 5mg I cannot get lower without a resumption of chronic pain. They affect my stomach but I took nurofen and paracetamol for years before and still occasionally top up when I’ve pulled my knee or overworked a wrist. I’m taking one day at a time and trying to enjoy my life and function within my world. I tell nobody. They don’t see my “purdah” days. It’s a bore to everyone else who is fit and healthy.

[Lollybygolly]

The only people who seem to be genuinely interested are fellow sufferers. They understand it all.

[Kendrew]

Thanks for sharing that. Makes more sense.