Burning sensation in legs

Hi Eileen, 

Ive been on 1.25 mg per day for about 6 weeks, but I must say I've been struggling a while, morning stiffness lasting a while, and after I'd rest during the day, a little stiffer than normal, plus generally aching all over. I've put a lot of it down to stress as I've had to retire from work due to PMR. then the burning in my legs, so I'm not surprised at the reading really.

I understand what you mean that 5mg may not be enough to douse this inflammation, my rheumatologist on Monday will have much more understanding on this than my GP. 

Im also concerned that my heart rate is quite high when I'm walking, or doing general housework, so whether there's an underlying issue that could cause CRP/ESR to rise I don't know.

many thanks

Andrea. Xx

Sorry to hijack your thread, Andrea, but I’m really interested in your comment Eileen - ‘you need at least 5mg above where a flare happened if it was due to reducing too far.’

I’ve been on 11mg since a flare up last November when I had reduced (a little too quickly perhaps!) to 5mg.  Since November, I’ve been OK, definitely not completely pain free, but coping well and energy back, no stiffness.  I wrote a while back as I knew I’d been doing too much, started feeling ill again with pain levels rising.  However, that time (May) I managed to rest for a week and things returned to ‘normal’ again.  

These last 2 weeks, I have begun feeling unwell again.  Pain levels rising in my shoulders and hips (feel it in my buttocks).  I also have tendonitis in my arms.  This week I am now beginning to stiffen and feeling like I am shutting down in terms of what I’m able to do.  I have been completely resting but, unlike in May, it does not seem to be working and it’s definitely the PMR kicking in big time!  

My questions are: 

Should I increase my dose without consultation with the doc - I don’t see him again until September.  I was thinking about asking for a blood test but I know these don’t always show raised markers as it takes time for these to catch up with inflammation.  

If yes, what should I go up to, as I was doing ok for 7 months on 11mg and had really wanted to begin tapering (DSAS method, obviously!), not increasing! 

I was interested to read recent comments about the dangers of leaving rising inflammation and wondered if this indeed was good wisdom instead of soldiering on in pain.  Particularly, I am concerned about the link between inflammation and cancer as I have just been treated for breast cancer and the PMR arrived at the time of my diagnosis.  Too much of a coincidence, perhaps? 

Sorry for the long post.  Well done to those who have kept reading!  

R x

There really is no point in soldiering on in pain - you have to have the relief to balance out the downsides of pred. 

I have to say - if your PMR arrived at the same time as the BC are they sure it isn't linked? 

Where are you? In the UK? How helpful is your GP? I would ask for a blood test - you never know, it might show something. But PMR can flare because of increased activity in the underlying autoimmune disorder as well as because of reducing too enthusiastically. And you could try a few days of a higher dose - if it works you can present the result of the test to your doctor. If it doesn't - there may be something else going on.

Hi Eileen - thank you for your prompt response.  I’m in Southampton in the UK.   My lady GP is hard to see - sometimes a 6 week waiting list.  I did manage a ‘review’ appointment a few weeks ago (requested by the surgery due to repeat prescriptions and I rarely go!) and I did feel that she had heard me and my request to be treated holistically in terms of both BC and PMR.  For example, my oncologist is not keen for me to take calcium.  I had also read that there is some bad science around calcium.  However, my calcium levels are reasonably low and my doctor was keen I took a supplement.  My vit D is also low.  And my DEXA scan last year showed osteopenia.  She wasn’t really sure why my oncologist should not be keen.  I always feel the buck stops with me and I need to decide what I’m going to do because both my GP and rheumatologist don’t seem very sure what to advise!   It is clear that diagnosis and treatment is more an art rather than a science!

If I upped my Pred by 1 mg (taken perhaps in the afternoon) for a few days, can I drop down again to 11mg if it doesn't kick in?  Without doing any slow tapering? 

Thank you, R

The calcium and breast cancer link is possibly that they are concerned that having extra calcium in the diet COULD feed the microcalcification (tiny areas of calcium deposited in tissue) that is seen in early breast cancer and what is seen on the mammogram I think. I'm not an expert - but that is how I read the stuff I have found.

It would probably be a good idea to discuss it with your oncologist - because there is fairly new research that suggests that taking bisphosphonates plays a role in stopping the spread of primary cancer, I think perhaps by fixing the calcium in the bones and keeping it out of tissue. Anyway - having low calcium and low vit D and osteopenia does require some sorting out and it would make sense for your GP and oncologist to work together on it. This may be one of the places that taking a bisphosphonate is a good idea so it is worth asking.

The "bad science" you mention about calcium - is that the idea that calcium supplements are felt to cause calcium deposits in the wrong places? That was "bad reporting" in a lot of cases - if you take vit D as well it wasn't a problem. It was also a problem in women eating a diet with plenty of calcium anyway and taking just calcium supplements - more is not always better and indiscriminate supplementation isn't always a benefit. In our case though, being on pred makes us lose calcium in urine and having a higher intake helps avoid calcium being lost from bone without our needing to take drugs like bisphosphonates. 

In case you don't already know it's been found that Vitamin K2 (not K1) is essential in making sure that calcium goes into the bones rather than being deposited where not wanted where it can do harm.  A deficiency is likely with modern Western diet, and easily remedied through K2 supplements.  

Hi Eileen, I'm back with my rheumatologist tomorrow regarding my ESR 91 and CRP 19. Since I've increased the pred to 5mg I'm far more mobile and pain free. What is concerning me is that last week the rheumatologist tested my immuglobin levels, and I'm having a follow up meeting to discuss the results!! What could be the reason for him testing that??

Many thanks

Andrea. X

Honestly don't know - unless he isn't convinced you only have PMR. The various Ig levels may show some sort of immune disorder.

Mmm, yes he's wondering now whether I have Lupus as well?

but I don't have the characteristic rash! 

It'll all be revealed tomorrow.

thanks Eileen.

Don't forget to come and tell us!!!

I’m so sorry I did not get back to you - I couldn’t find the thread where we had been corresponding!  I can now see where I can find a list of everyone’s comments, so that’s a good thing!  

That was a helpful explanation about calcium and I think you’re right.  I have been taking Risedronate - a bit hit and miss some weeks when I forget - but at least it may be helping with the calcium and the breast cancer.  I take it from another thread that I read that Risedronate is not Alendronic Acid?  That seems to get a bad press on here! 

My GP said she would write to my oncologist to get some more info so I’m hoping that’s in hand.  In the meantime, I’m still on 11mg of Pred but still tempted to up by a couple of mg to see if I can lift myself out of this low level pain across shoulders and hips.  I’d like to be able to function on full power a bit more as this is quite limiting and I find I am more inclined to stay at home and not embrace life.  Not my usual outlook!  

I enjoy reading the messages here as I have learnt so much about PMR and feel ‘held’ and ‘normalised,’ if there is such a thing?!! 

Have a great week,  R

That's great, thank you Anhaga for the helpful advice.  I'll check out what is in the supplement I'm currently taking.  Apologies for the late reply!  See my comments to Eileen about not being able to find this thread!  

Have a good week, R 

Risendronate and alendronate are both bisphosphonates but are different salts. Risendronate seems a bit less unpleasant - not that I've had much to do with either.

Normal? What's that?  

I've just been reading up on both drugs from threads posted years ago.  Definitely going to avoid AA at all costs after reading about jaws!  And yes, indeed, what is normal?!! I'm trying to get used to my 'new normal'.......

Hahaha... hilarious!  Just googled Risedronate and this is the first thing I have read..... 'You should not use risedronate if you have low levels of calcium in your blood' (which I do) and other advice is 'To make sure risedronate is safe for you, tell your doctor if you have:

low blood calcium (hypocalcemia);

a vitamin D deficiency;' and 'Osteonecrosis of the jaw may be more likely if you have cancer or received chemotherapy, radiation, or steroids.' 

Seems like my adhoc nature of taking Risedronate is probably a wise thing and I should consider discontinuing altogether?!  Oh boy...! This is a minefield! 

It is isn't it! But I really am a bit taken aback that your GP doesn't know that sort of thing - I know, she has done far more medicine than I have! Maybe it's as well she is difficult to see - or not...  But this "tell your doctor if..." always worries me too - wouldn't you hope they might have LOOKED at your medical and medications history?

Southampton has a very good record in osteoporosis I think - can you get your oncologist and the osteoporosis people to talk to one another I wonder? 

Hi All,

I've not got Lupus or Myeloma!!, that's what was worrying me to be honest!!

CRP down to 10 from 19 so rheumatologist going to start me on another steroid sparring drug, not methotrexate, I can't remember what he said now as I'm goIng on holiday next week and I'm seeing him again in August to start it. I'll let you all know what it is and how I am on it!

Thank you all

Andrea x

To be fair to my GP, it is the senior rheumatologist who has wanted me on Risedronate!  He said the necrosis of the jaw was like 'hens teeth - never seen!'  It's so difficult to take back control when you don't always trust the experts, isn't it?  

On a positive note, my GP has agreed an immediate blood test - still have not upped dose but now into week 3 of raised pain levels and wanting to take some action soon.  Resting is just not cutting it!  And life is out there!  In spite of PMR!  The GP is going to get more difficult to see - just received a letter to say the surgery is closing.  Maybe that's a good thing as it will now force us to look for a new GP after 20 years wrestling with this surgery! Shame... I just thought she was beginning to know me and understand the situation holistically! Hey ho! 

Here's to a better week for everyone! R 

He thinks does he? While I don't think I have met anyone with necrosis, I do know several people who have serious jaw/tooth problems and 2 ladies with atypical femoral fractures as a result of bisphosphonates. That is just on 2 PMRGCA forums in the UK.

All the best.