Still on starting Pred dose, still in pain.

[jane57]

Hi everyone, was diagnosed with PMR in March 2015, (haven't posted for a while) and for the first six weeks or so was feeling 80 percent better. Because I presented as atypical, I had no raised inflammatory markers in bloods. Was told to taper by 2.5 mg by Doctor and since have had to go back up to 15mg and Rheumy has put me forward for an MRI scan, Dexa scan and a blood test for Ankylosing Spondylitis? This is because I am still suffering with pain in hips, lower back and thighs. It comes and goes throughout the day and is worse if I sit or stand for long periods. Any kind of exercising or crouching etc seems to leave me in more pain the following day and muscles very sore. Does anyone think I should suggest trying 20mgs to see if that deals with the pain or should I stay at 15mgs? Due to taper soon, and worried about even more problems. Would like to visit Doctor armed with some suggestions from this site. My MRI is due on 16th July, but worried as I am going on holiday to Crete on 23rd July and would like to be pain free for that. Also does anyone know the best way to store prednisolone in a hot climate as I understand it shouldn't be kept refrigerated. Oh should also mention, I am taking 40mg Esomeprazole for GORD with a Hiatus hernia so unable to take many pain killers. Any advice would be welcome and thank you for reading. My thoughts are with everyone else out there suffering this horrible illness.

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[Celtic PMRGCAuk volunteer]

Jane, you may be someone who would have benefited from reducing by just 1mg at a time from your starting dose. As you mention having experienced as much as 80% relief in your pain on the starting dose then that does seem to confirm the PMR diagnosis.

It is very common in the first 12 months or so of treatment to experience flares in the inflammation resulting in returning symptoms. Often this is caused by reducing by too much or too soon, but equally it can be caused by overdoing things because you feel so much better. Also it is very important to only reduce when you know you have a few quiet, relaxing days ahead whilst your body adapts to the new dose.

If 15mg proved so successful first time around, then hopefully increasing to the same dose will again get control of the inflammation without you needing to go as high as 20mg.

Meanwhile, it's reassuring that your rheumy is carrying out further tests to exclude other conditions - perhaps at the same time you could get him to investigate Esomeprazole, as that is known to cause muscle pain in some people.

If you haven't already read Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide', then do consider doing so. It is available rom PMRGCAuk pmgcauk.com, and on Amazon. All royalties from the sale go to the Charity. It is very comprehensive and includes a section on tapering steroids. All those who have read it highly recommend it.

Meanwhile, good luck with your MRI results and I do so hope you feel much better by the time of your holiday.

[jane57 in reply to Celtic]

Dear Celtic, thank you so much for your very valid comments, I certainly will look into the Esomeprazole, as poss cause of pain. Must admit, I am finding the Doctors quite unsympathetic at my practice. One in particular is very PMR "informed" but it is difficult to see him at every visit. Pain wears you down so much that eventually you feel very vulnerable and at risk of being judged as paranoid, it's so frustrating. All we need is to be taken seriously, a lot of people on this site don't even get referred to a Rheumatologist! Sorry for the rant! Thankyou once again for your response it's really good to talk to people who understand. Jane

[tina-shelley]

Hello Jane, isn't PMR very confusing. May I ask how long you have been on the upped dose of 15mgs. I had a flare pre Christmas last year when attempting to reduce from 9 to 8mgs and i definitely found it harder to get and keep the flare under control than I had getting the original PMR under control with the first dose of preds.

You say you are ready to taper soon, well I would be tempted to stay on this dose at least until you've had all the scans and blood tests done. Why, because if another condition is diagnosed then you know that some (remember you can have multiple medical conditions, not all inflamatory and so would not respond to preds) of the pain could be due to that, and if it's not an inflamatory condition could be an answer as to why you have pain in your hips whilst still on preds. Does that make sense?

Also if you are going on holiday very soon I wouldn't be tempted to taper, better to wait until you return.

Sorry I can't help you with the storage of preds question or your stomach problem other than I always take my tablets with yogurt and alpro almond milk. I wish you all the best. Christina

[jane57]

Hi Christina, thank you for your reply. I have been back on 15mgs Pred for just over 4 weeks now, which is how long the Rheumy suggested before I start to taper and he suggested at 1mg at a time. However I might have a task convincing the Doctor (depending on who I see) to let me stay on that dose to cover my holiday which would be another 5 weeks. Will certainly try though as it makes sense considering the pain I am still in. Am having genetic bloods tomorrow (HLA B27) as last weeks one failed for some reason! MRI on the 16th July. Thank you for your well wishes and your very valid advice, also I hope your PMR journey is going smoothly with not too much pain and discomfort. Will keep updating........kind regards Jane

[PMRandRA in reply to jane57]

Hi Jane, don't forget that your GP is the "co-pilot" in this. The Rheumy's decision is greater than the docs. so tell your doc what is happening, don't ask. LOL Sounds dreadful I know, but I found it quite muddling at first, one doc says this, Rheumy says that, new rheumy (first was a locum) says something else, but it was right! WooHoo! So now I tell my Doctor too.

Have a great holiday - you go girl!

[jane57 in reply to PMRandRA]

Hi PMRandRA, thank you for your reply! I love your positivity, will you come to the Doc with me! Seriously though, you are right. I was wondering if I could contact Rheumy on the phone to ask his advice as to wether I could increase my Pred dose to see if it makes a difference or could that interfere with MRI results? Leaves me in a bit of a quandary. Just would like a pain free holiday. Hope you are not suffering too much on this journey. Kind regards, Jane

[PMRandRA in reply to jane57]

Hmmm, now that's a good question Jane, about the MRI results. What I do if I find there is too much pain two weeks or so after a decrease is to increase by 1mg only. You will know within a couple of days if this has resolved it - my Rheumy suggested this increase without permission, although it is tacit permission really, - so I don't have to wait in pain for her to approve the rise or not.

Are they doing the MRI scan for the suspected Ankylosing Spondylitis? I haven't heard of an MRI being done for PMR/GCA, not to say that it isn't done though. So if the MRI is for Ankylosing Spondylitis then it shouldn't be affected by the steroid dose increase of 1mg. They are happy to give the scan on 15mg, so 16mg should also be fine but I wouldn't go as high as 20mg without consulting your specialist or doc first.

Good luck.

[jane57 in reply to PMRandRA]

Hi PMRandRa thank you for all of that advice, I am seeing a Doctor (never know which one) but will try for the "good" one, and I will ask if he will give me a supply of 1mg Preds as I go along with your advice on increase at that dose. And yes I am having the MRI for the suspected AS. Should also have results of the HLA B27 bloods which could give another clue to diagnosis. It's very stressful having to make sure we have enough meds for a holiday. We chose Crete so along with Greece's crisis right now will need a huge suitcase just for Euro's and medication!!!! Thank you so much for advice and I hope your journey is comfortable and pain free. Kind Regards Jane.

[Hidden]

Hi Jane57,

I found your post very interesting and thought I would share my history with you.

I had bilateral shoulder and hip pain with thoracic and lumber spine pain, the pain was very stiff in nature, turning over in bed, getting out of chairs etc was very difficult. My CRP and ESR climbed a little and although I was seeing a Rheumy they couldn't work out what was wrong. At the time I was convinced I had PMR and convinced my GP to give me a trial of pred 15mg. It made a big difference to my pain. I then developed GCA type symptoms ( blurry vision, Jaw claudication etc ) and was treated with high dose pred.

Fast forward 2 years ( I won't bore you with all the details ) and it has been obvious for over a year that PMR/ GCA isn't responsible for my symptoms. Ankylosing Spondylitis ( AS ) was suggested as a diagnosis but an MRI of my spine only showed previous thoracic spine inflamation, there was no sacroillitis. I now wonder if the high dose prednisolone made the MRI a false negative result. 18 months later I had a blood test which showed I was HLA B27 positive, unfortunately although over 90% of patients with HLA B27 have AS it is also present in 8% of the general population ( who don't have AS ).

Now the best guess is that I have Behçet's Syndrome ( a very rare form of vasculitis ) with possibly overlapping AS, there have been quite a few case reports of this overlap.

I just wanted to say that having researched AS it presents differently in women ( men have much more " classic " symptoms ) especially with peripheral disease. Although it does respond to prednisolone it's not used routinely used to treat AS because of the increased risk of oesteoporosis in the spine. I have weaned myself off prednisolone recently ( after 2 yrs ) and the pain and stiffness is back!

I am not saying you have AS but it definitely should be ruled out, I have the same problems as you with sitting and standing. Unfortunately AS is another auto immune illness that is very poorly understood by a lot of Rheumy's, the AS charity has a good helpline and will be able to point you in the direction of a local specialist ( it's a particularly difficult diagnosis to make in women of a certain age! ).

If you do turn out to have AS then the treatment has really moved on recently, if you can't tolerate NSAID's then second line treatment is anti TNF's ( a biologic drug ) which has had great results. I am waiting on some test results to see if I qualify for anti TNF's to treat my Behçet's Syndrome.

I hope you manage to get some answers/ certainty soon and have a lovely holiday.

Best wishes

Keyes

[jane57]

Hi Keyes, thankyou so much for your response and all the information you have given me. It's very interesting and sounds very much like my journey/ illness. Will be interested to hear how you get on and will update my progress. Good luck and kind regards. Jane