Needing help and advice: I am new and need advice I... - PMRGCAuk

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Needing help and advice

glenelle profile image
17 Replies

I am new and need advice

I am concerned about the side effects of Prednisolone. My legs are aching really badly in the muscles in my thighs and calves and its very painful. I find it hard to walk more than 200metres before the aching begins. I was wondering if this will stop when I cease taking Prednisolone??

Any help out there??

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glenelle profile image
glenelle
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17 Replies
Grants148 profile image
Grants148

I am sorry you are in so much pain,was the prednisolone given forPMR? I think you need to see your GP ,the steroid should be helping with the pain, hopefully he will be able to help you,there are other conditions that are like PMR that do not respond to steroids,l would not stop taking the steroids without advice from your doctor.l wish you all the best for a good outcome,please let us know how you get on.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi glenelle,

A bit more info might help please. Sorry to start with questions, but the answers to that may give us a clue.

What’s your diagnosis? When diagnosed? Starting dose? What symptoms pre diagnosis?

It could be the Pred or it could be the illness itself so your probably need to talk to GP as Grants148 has already suggested.

glenelle profile image
glenelle in reply to DorsetLady

My pmr was diagnosed in August 2017 15mg pred to start I am now on 2mg.

Spoke to the doctor after seeing a vascular surgeon he told me it would be a waiting game until after I have an ultra sound on my leg.l really wanted to know if these are common symptoms or I am stuffing from something else. The aching started about December and has slowly worsened. PMR consultant thought it was not his area and my g.p. referred me to the vascular dept. It really is a difficult as I am usually a good long walker and I just can't do that anymore

HeronNS profile image
HeronNS in reply to glenelle

You have tapered from 15 mg pred last August to only 2 mg less than a year later? That's pretty fast.

However, to get to the aching legs. I had this happen to me when I was at about 4 mg. It went on for a long time and did bother me a bit when I was walking but eventually seemed worst when I was at rest with my feet up - like at bedtime when I wanted to sleep. Keeping the legs warm helped, cue the hot water bottle even in summer time. However I recently found out I'd become sodium deficient (always low salt cooking, no salt cellar on the table, plus had given up most prepared foods when trying to live very healthily after PMR diagnosis) and after I started to consume a small amount more salt a number of troubling symptoms resolved, and the achy legs went away. Connection or coincidence? Who knows. But these symptoms went away when I was not actively tapering, was at 2.5 mg. for duration.

glenelle profile image
glenelle in reply to HeronNS

Thank You so much for your response. I tapered the amount with the doctors recommendation. I will talk to the consultant next week. It is worse when I am at rest or after walking more than 200 metres . Will try the salt thing as I gave it up when I was diagnosed with diabetes 3years ago

PMR2011 profile image
PMR2011 in reply to glenelle

Hi Glenelle, what you describe sounds like the symptoms of PMR which can last several years. I fear you may have tapered too fast. Can you consult your doctor to see about going back to the last dose where you had minimal pain? Hope it resolves soon.

Constance13 profile image
Constance13 in reply to HeronNS

Hi Heron. Salt certainly affects the pain in joints. Like you I used lo-salt for years, very little in cooking and watched salty snacks. When in hospital they had to put me on salt tablets because the sodium level in bloods was so low. Now lo-salt has gone, I eat salted peanuts and even crisps occasionally.

How are you enjoying the weather? 😎

HeronNS profile image
HeronNS in reply to Constance13

All of Eastern Canada is in some kind of stalled system which is bringing us extreme humidity. Actual temperature has been high 20s the past few days, but feeling more like high 30s, where I live on the Atlantic coast! I love my heat pump.

Constance13 profile image
Constance13 in reply to HeronNS

What is a ’heat pump’?

HeronNS profile image
HeronNS in reply to Constance13

This is how we heat our home in the winter. It's a unit which extracts heat from the air (yes, even in the dead of winter) and heats the air in the house. In the summer it works in reverse by taking heat out of the air, and it also has the added talent of dehumidfying the air, although I have never understood how as it's only heat which is exchanged, there is no air exchange going on, still have to open windows to exchange air! There is a more expensive and efficient kind of heat pump which extracts heat from the ground.

heatpumpssetyoufree.ca/abou...

PMRpro profile image
PMRproAmbassador in reply to HeronNS

It is stalled here in Europe too - but mainly pretty dry. Though the Alps have had an awful lot of rain this year - now it is making up for it!

HeronNS profile image
HeronNS in reply to PMRpro

We've apparently had far fewer rain days in the past month, but significantly more rain, which means things dry up and then there's a deluge, then everything dries up again. Climate change is definitely here. Too bad the people who make decisions about the future of a planet suitable for human civilization probably live in air conditioned towers....

PMRpro profile image
PMRproAmbassador

I assume you have a dx of PMR and are on pred?

I don't think this is the pred necessarily and since you have already done what to me is obvious - get referred to a vascular department for testing - you have to be patient and see what they say. What you describe is typical of peripheral artery disease - the blood flow to the muscles is OK at rest but isn't enough when you want to do more. Without the test results it is impossible to say anything else.

What you CAN do in the meantime is to walk as far as you can, rest and walk a bit more. It is called "walking through the pain" and encourages other blood vessels to take over the job the main ones are struggling with. If it is just the inflammation causing reduced blood flow a bit higher dose of pred might well help. If it is a more "solid" blockage then there are other things that are possible. But the vascular surgeon is the expert.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi

As promised.

Please read and take note of pacing yourself -

healthunlocked.com/pmrgcauk...

suzy1959 profile image
suzy1959

I am not an expert in Vasculitis, so I bow to PMRpro's superior knowledge of this, but seeing that you are already on only 2mgs pred. I just wonder if you are not on enough now to suppress the inflammation? You have had a rapid reduction, so I wonder if it might be useful to review what was happening in December- what dose were you on, have you reduced still further even though you were in pain? I ask this because so many people are given the impression that they are meant to be reducing to zero which is not right. We are reducing to find the lowest dose that holds the inflammation at bay- I have not been able to get below 9mgs without flaring and I have had PMR for over 6 years!

Constance13 profile image
Constance13 in reply to suzy1959

Morning Suzy (or it is here anyway)! I can never believe how some people get down to such low levels of pred so quickly. I too have had PMR for six years and got down to 3mg for several weeks before the usual “bang”! Up to 4 again now with a boost of another gram every now and again (especially in this absolutely unbelievably hot weather). 😎😡

Rugger profile image
Rugger

As I'm sure you know, Poly my algia means "many muscle pain", so could it actually be the PMR that's causing the pains - who knows? If it is, then your 2mg dose is not enough to cope with the inflammation. You'll have to discuss this with your doctors when you've had the ultasound.

I have PMR and in the early days, even a small incline felt like walking up a mountain! This has improved with time.

Me: PMR 26 months. 2 flares - at 1 year and 22 months. Now on 7mg pred.

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