Newly Diagnosed and Confused About Steroid Reduction

[Trixiechamp]

Hi all, please excuse all the questions but I have been recently diagnosed by my GP and am struggling to understand what it is I'm dealing with.

I'm 46 and after 2 years of worsening symptoms and eventually getting to the point where I couldn't write a birthday card or brush my hair I dragged myself back to the GP and said I felt about 100 years old and all my other symptoms again and this time he listened. My blood tests a year ago were 'normal' apart from raised white blood count and I also a 'wide spleen' (which never really got explained?)

Anyway, I was started on 30mg Pred to get the diagnose of PMR and it was a like a light switching on, literally the afternoon i started the Pred the pain and stiffness I had been told were due to 'my age' started to dissipate and I slept like a log, pain free for the first time in years. I have been feeling fantastic since (apart from blood sugar and sometimes a bit 'spacey') but no pain.

So, I saw my GP for follow up yesterday and he told me it was definitely PMR and to reduce down the Pred to 15mg...I had previously been told over the phone after the first week to reduce by 1 tablet (5mg) every three days and was on 20mg but now at 15mg I am finding my symptoms returning - I'm very uncomfortable in the hips and neck, especially at night, burning pain in my wrists and elbows, stiffness in my hands, difficulty washing my hair....I feel like a complete wuss but having felt so 'normal' for the past week I'm now feeling pretty fed up and miserable now the 'white noise' is back. My question is, is this normal?

Am I supposed to be relatively symptom free for a while and then reduce down, or should I expect to feel horrible for a bit and wait for the lower dose to 'kick in' over time?

Also, re exercising...having put on 3 stone due to inactivity and sheer exhaustion over the past 2 years I'm keen to get moving, I do walk my dog every day and the Dr has suggested that I can do this and cycle, swim etc but not much else. Is there any particular exercise that is good to help with PMR and not make it worse?

Thank you for any advice and sorry again for the long post (steroids are making me a bit hyperlol)

[PMRpro Ambassador]

It is possible you are doing a bit too much exercise - the pred relieves the inflammation but the actual cause is an autoimmune disorder that continues chugging away in the background and leaves the muscles intolerant of acute exercise. But walking is good - just don't try walking up too many steep hills or hurrying! Pacing is the name of the game!

I think you might be better asking your GP to let you go back to 20mg until all your symptoms have settled down - and if you have had elevated blood markers, until they are back in normal range. Only then should you start to reduce and slowly - not more than 2.5mg at a time, staying on each new dose for at least 3 weeks. The recommended starting dose is the lowest dose that works in the range 12.5-25mg/day - it was 15mg but it is often just a bit too low, especially when you have been having symptoms for some time.

In terms of weight reduction (know where you're coming from, I put on a lot of weight due to 5 years of inactivity) try to cut your carbs drastically. Pred changes the way your body processes carbs and that is where the commonly experienced weight gain with pred comes from, and cutting carbs really does seem to work. It will also deal with that already accrued weight - and usually once you cut carbs you stop craving food between meals.

No need to feel a complete wuss - we've all been there!

[SheffieldJane]

Hi and welcome to the club no one wants to join!

Two things strike me. 1. )30 mgs is a very high starting dose for PMR. Most people are given 20 or 15 mgs.2. )To reduce by 5 mgs is a big drop. Even though you are newly diagnosed I think you would benefit from a much more gradual reduction, aiming not to reduce by more than 10% and letting that settle for 4 weeks before reducing again. Prednisalone is available in 1 mg tablets that a tablet cutter can cut in half.

If I were you, I would return to the dose I felt ok at. Was that 20 mgs? Then let your symptoms settle down before trying to reduce again.

Enlightened Doctors realise the value of a gradual reduction. It is much more likely to stick.

I expect they were slow to diagnose you because you are young. I'm glad you got the Prednisalone miracle. Now the work begins to wean yourself to a dose that manages the inflammation . Stick with us, this forum is a life saver.

[Trixiechamp in reply to SheffieldJane]

thank you! Yes the 30mg was a 'short sharp shock' basically to diagnose between Fibromyalgia, RA and PMR as my inflammation markers weren't showing anything untoward. He was quite surprised at the PMR because of my age but wants to get me down as quick as possible to below 10mg so I don't get the adrenaline crash?? It's difficult trying to negotiate with the GP as they are the supposed 'experts' and have their own agenda (even though they are obvs not 'experts' in everything), is it worth printing out what you've suggested do you think? Everything I've read says to reduce slowly but this is contrary to what he's presecribed....looks to me like other friends with long term conditions, we have to become our own experts to get the best outcome x Tanya

[kulina]

A year ago, my first rheumatologist diagnosed me with RA because I was "too young" for PMR but he had no problem diagnosing me with RA even though the tests came back negative numerous times. My gut feeling told me I had PMR, which my second rheumatologist confirmed. In September I was placed on 20 mg Prednisone for 6 weeks and reduced after tests confirmed no inflammation. After numerous reductions, staying on the new dose for 4-6 weeks and more blood tests confirming no inflammation, I'm now at 10 mg. She always keeps me on the new dose for at least 4 weeks before reducing again after blood tests confirm no inflammation. I have to admit, I have been feeling great following her advice. About exercise, I used to walk 5 miles a day before PMR. After PMR, last summer, I couldn't even make it once around the track field at the high school. Forget small hills, I'd be out of breath and wonder if I'd ever be back to normal. But... I walked and when the pain got too much I stopped. I'm finally back to my normal 4-5 mile walks again but it took a long time to get back to that. You have to move but listen to your body, don't push it. For me walking is the best exercise, but make sure you have good shoes and you don't hurt yourself. I also found icing and using a TENS machine every night relieved some of the occasional pain. I hope you feel better soon.

[Joyful13 in reply to kulina]

Kulina,

You mention that you are using a tens unit. I fractured my tibia and fibula a year ago and had to have surgery. Due to the severity of the fracture, I now have 2 metal plates and numerous screws in my left ankle area.

Do you know if you can use a tens unit with these metal implants?

Also where on your body do you use the tens unit?

Thanks for your help.

[kulina in reply to Joyful13]

Hi Joyful13 I had to experiment with the unit to find the settings that worked for me. Mine has a lot of settings but you can find a lot of instructions on YouTube. I use this website for pads placement. dmelibrary.com/tips-using-t...

Also, I'm not sure you can use it near your metal implants but the best thing to do is to ask your doctor and/or physical therapist for best placement of the pads. I use it on my knees, hips, shoulders and on my back when I have back pain. I hope it works for you too.

[PMRpro Ambassador in reply to Joyful13]

Joyful:

tensmachineuk.com/

According to the site - they must manufacture them. If they don't know, no-one will.

[kulina in reply to PMRpro]

That's true. I hope it works for you. I didn't believe in the TENS machine but my husband made me use it.

[enan-illuc in reply to kulina]

I have GCA/PMR (August 2016) and I also use a TENS unit for pain. It is very effective for me. I use it during the day and at night for pain. Thank you for your posting.

[PMRpro Ambassador in reply to kulina]

Kulina - how old are you?

[kulina in reply to PMRpro]

Hi PMRpro, I'm 54, but I was diagnosed with PMR at 53.

[PMRpro Ambassador in reply to kulina]

Grrr - why don't they all read the BSR Guidelines? Age over 50 - and we fought so hard to get it lower! I was 51 when it started - but it wasn't age he used as the get-out, it was normal blood markers!

[kulina in reply to PMRpro]

I know, maybe because I'm in the US? I found my first rheumy arrogant, I couldn't talk to him because he knew best and misdiagnosed, with RA, at least 2 other people I know of. He said "it's an old person disease" 70+, so I picked up all the brochures he had in his office and diagnosed myself with PMR, refusing to be put on a life-long prescription of Methotrexate. If my gut feeling tells me something isn't right, it isn't.

[kulina in reply to PMRpro]

I mean PMR: He said "it's an old person disease" 70+

[PMRpro Ambassador in reply to kulina]

Exactly - we have fought and fought to try to get the minimum age lowered. But what they HEAR is the "average age at diagnosis 73" which also isn't true I suspect, judging by the age spread on the forums. Yes, there are lots of people in their 70s but they've had PMR for several years. And because they won't look for it in younger patients - they don't see it and send the patient away with a dx of fibromyalgia - at least there they aren't putting them on to too many powerful drugs since nothing works. They can't even get it right when the patient has elevated ESR/CRP - which immediately says inflammation - no inflammation in fibro...

[Trixiechamp]

Thank you so much! I think i basically overdid it as I've read most people do after the 'miracle of Pred' and so really became quite depressed and fed up, I think now I have an actual diagnosis and reading up can be quite overwhelming.

On the one hand I'm happy that I'm not just turning into a lazy unfit fat lump but on the other its a lot to take in and the GP scared me quite a bit with all the negatives regarding the steroids and not much other info. So all this information is so helpful, thank you so much, I'm starting a low carb diet to try and lose some weight and will just carry on with the dog walks for now, I need to start listening to my body!! I really do believe that this either came on or was exacerbated by stress (my youngest son had an accident 2 years ago when he was hit by a car). Although at the time I thought I coped quite well, I can see that another pretty stressful period in October and a fall in January pretty much was the last straw!

Will keep checking in on my progress, thanks so much again x x x

[PMRpro Ambassador in reply to Trixiechamp]

If you want to do more reading and read stories there are a load of good links here:

patient.info/forums/discuss...

Another forum - and we can't use links in posts there so they are all conveniently collected together. Happy homework!

[kulina in reply to Trixiechamp]

Yes, we think we cope well with stress until it comes and bites us. I believe stress has a lot to do with my condition too. Before my PMR diagnosis, my father died after being in and out of hospitals for a year. After his death my family fell apart because apparently he was the glue who held us together. PMR has made me a stronger person and more in tune with my body. Listening to your body is the best thing you can do. I call it "go with the flow". I also try to stay away from stress, mental and physical, as much as possible and live each day in gratitude. For me diet and supplements are also important I cut out white sugar, white flour, breads, dairy, except yogurt and I do feel better. Reading some of the posts on this forum, I just don't understand why some of the doctors rush the Pred tapering. I causes so much unnecessary pain.

[Rimmy]

I find it very interesting that many people on this forum and others identify 'stress' as a frequent 'triggering' factor. 'Stress' is of course a very broad word that relates to a spectrum of human perceptions and experiences with physical, emotional and psychological ingredients. All these aspects are related of course and although alternative health and 'medicine' practitioners discuss the significance of these interconnections frequently or as even 'essential' in our understandings of well-being - orthodox medicine has been less comfortable negotiating what their 'science' has regarded as at best 'nebulous' areas. It seems however very simple to me to bridge these 'gaps' just by listening to the experiences of 'patients' in a more nuanced way. Grief in my case seems to have been a major trigger although when I look back there were several events over many years which resulted in me realising I had something called 'PMR'. But evidence - even here suggests that 'within' that acronym - and also with GCA there are probably a diversity of conditions nobody fully understands as yet. Everyone who posts about their experiences here makes such an invaluable contribution I think.

Thanks to you all