Following my last post at the end of December I have followed my rheumatologists instructions and decreased the press by 5mg per week from a 20mg platform , his view was that my symptoms were not symmetrical enough and therefore doubted the initial diagnoses from the GP ( crp 50 , esr 51 ) As my last post this worried me but decided that he must be followed and perhaps was right . Well the first jumps down seemed ok and I felt good and gaining in confidence and bloods showed crp down to 20 and esr down to 34 which was a real boost . I continued to 5mg the following week then down to zero !! Felt not to good here but then why should I for heavens sake ! I had an appointment this week with a new rheumatologist this week and was in medium stiffness and pain , she was very thorough and wants me to have a chest scan to check out if there are underlying issues ? and would like me to stay off the pred for three weeks until the scan as the results will be more meaniningful . Two days later I am now in serious stiffness and pain throughout the day but especially around 4am and yes it is symmetrical across the shoulders and the legs and also a strange feeling when touching my arms and legs in that they feel colder and slightly numb ? Every day I read the posts and the answers to them; not sure who you all are but I have to say the advice given in terms of knowledge and careing is excellent so a massive thank you . I’ve lost confidence slightly and I really appreciate the help x
Thank you
Tim
Written by
jura19
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Well, if that’s what she wants, then you have to comply....not saying she’s right or wrong!
I would suggest you detail all the issues you have so you can tell her at next appointment.
Although the next few weeks won’t be very pleasant- and I’m not being unsympathetic, but it’s not as long as some people have to wait for a diagnosis - so sorry to say, it’s just a matter of biting the bullet and getting through them. Obviously if you get any new headaches then you do need to seek advice ASAP.
Please let us know outcome after next appointment.
I agree with DL , if it ultimately means that the Doctors themselves will make a more concrete diagnosis of your Condition and finally get behind a more Caring and Conventional Treatment Plan , you may have to cope with these few weeks of growing symptoms.
It's horrible and not in anyway considerate of the Patient and their trauma or needs to use this sort of Drug Free Trial to make their decisions but it happens quite often when you end up with inconclusive results ; or Doctors whom see you at different points at the beginning of your illness , so create differing opinions on what you have because they see you on different days.
I agree with DL too , during this time write those notes on what symptoms you are getting , where you get them , when they are worse and how much the pain is increasing .
This Diary could end up being the vital record that finally makes them decide that it is PMR and put you back on the Medication you need , at the right level and for the time you need it.
During these painful weeks , you will need to rest a lot more , reduce extra activities and pace a lot more to be able to cope with the unmanaged symptoms , and, hopefully reduce them getting much worse.
Using extra supportive cushions or pillows on seats or in bed to take the pressure of your hips , shoulders and arms may also help reduce how intense the Pain is.
Paracetamol to help with some of the muscle pain and very gentle joint rotation make help reduce the pain and stiffness increasing too much too , but this will slow you down.
Eat lighter , smaller meals , drink more and take a vitamin / mineral supplement as coping with Pain can also cause a disruption in your ability to digest your meals and make you feel pretty flu like and nauseous.
If the Pain gets beyond anything you can reasonably cope with , and gets in the way of your Everyday Needs , do contact the Rheumy or GP and explain what's happening and ask to be seen more urgently to get the tests and follow up quicker to sort this out . If they know how bad you are ,and the pattern of Pain you are experiencing without Drug Intervention, it may just give them all the info they need to make your diagnosis without the extra tests and the wait.
I am doing the exact same thing as you as Rheumatology want to exclude a few things and am not convinced it's PMR. I feel supported and she is being very thorough but a fast taper isn't pleasant is it.
I'm 4 days into 10mg from 15mg and feel a bit like I've been run over and pain is returning. But as you say the scan will be better for having inflammation. I also had a chest x ray.
Thank you , I always read what you have to say and you have such a depth of knowledge and insight on this pmr business , can I ask a question that you might be able to help . The doctors and rheumies talk about the need to take all the other medicines that will counteract the effects of the steroids , I am reluctant to take anything that I may not have to , in your experience is there a level of press that is low enough not to do other damage over the long term that does not need the extras , it would be so good to know .
I have taken calcium and vit D supplements for a large part of my journey but in the last year or so it has been a bit hit or miss I take no bisphosphonates for bones, no PPI for gastric protection (they also result in loss of bone density) - and now I'm having a blank about what else they push on us!
Many of the so-called pred adverse effects are also found in an age-matched non-PMR and pred taking population - but they don't tell them they will collapse without this that or the other. I, like a few others, refuse to take pills "just in case" and so far any problems I have had have been made better by pred, not worse.
Some things we experience on pred can be managed by lifestyle changes - far preferable to pills.
Thank you so much , yes it is the biophosphonates that worry me most . I to hate taking pills and I need to find a level of pred that I can take over the long run that will give me enough help in lessoning the symptoms without causing any other side effects or lessonunv the risk , do you think around 7.5 might be a good level to achieve this ?
You can't choose a dose - PMR fixes the dose as the one that is enough to manage the inflammation. You won't do with less, the symptoms will return.
But as a start: insist on a dexascan to SEE if you need a bisphosphonate at all. You may be nowhere near the stage that intervention is required - I wasn't. My mantra: no dexascan, no bisphosphonates.
Well I’m holding it together on a low dose of 10 mg prior to a scan on my chest as they check to see what is causing my pmr problems , I am sort of ok but deep soreness across my chest and down the front of my shoulders make me carry my hands up by my chest , I seem to do this most of the time when possible and have realised that when I don’t I get tingling and numbness in the hands and feet . I am hope for that somebody will recognise this and be able to offer an explanation . Again thank you for any advice that might come my way .
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I take no bisphosphonates for bones, no PPI for gastric protection (they also result in loss of bone density) - and now I'm having a blank about what else they push on us! 
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