New to Forum with a few Questions

Hi everyone. I've been reading replies for a few months now but have a few specific questions to ask. I'm an Australian.

Firstly my rheumatologist isn't 100% certain I have PMR as I'm apparently "too young" - I'm 47yo. It was my GP who first suggested that the pain I was in was PMR. That occurred about 8 months ago. My GP referred me to a rheumy but I had a long wait to see him so my GP started me on 10mg just to see what happened. My pain eased about 3 hours after taking my first dose, indact it was incredible. Previously I hadn't been able to move my legs out of bed without a lot of stiffness or support my upper body weight with my arms without weakness and a lot if pain, thus was especially bad after sitting still for lengthy periods. After I took my first tablet I played a computer game for over an hour then got up to go to the toilet. I was standing before I realised what I'd done! Just got out of bed, without pain! Incredible!

So I eventually saw the rhuemy and he seemed keen for it to be anything other than PMR. He looked very closely at all my joints etc but except for a torn meniscus in my knee (which coincided with the PMR onset) I was fine. My GP had asked if I had felt unwell just prior to the PMR pain setting in and I mentioned that one night I did feel a little fluey with a night sweat. But that passed.

Anyhow 8 months later I'm in Austria staying with my partner. I have tapered my dose down to 2mg a day... roughly dropping 1mg per month as instructed by my rheumatologist. All is going well. I'm getting lots of rest and having a 3 month break from the stressful job of relief teaching (high school).

Each morning it is only my shoulders that feel a bit stiff and sore but it's not terrible. The pain is only bad if I try to extend my arm and lift something at the same time. By about noon I almost feel normal. I haven't had pain around the tops of my legs in months, only my arms. When I was at my worst I could barely sit down... I had to kind of fall into chairs. Going to the toilet was very hard. But all that has totally stopped.

My main question is: is it ok to totally taper off Pred if I still have the current symptoms in my arms or should I just plateau at 2mg or 1mg until I'm totally pain free and back to my pre-illness state?

My medication supply will probably only just last long enough until I return to Australia. I have a script with me but I think it will be hard to fill in a foreign country.

I'm worried about needing to. Crease my dose while I'm here but so far so good.

Sadly my diet is hard to control as I'm on a tight budget and kind of have to eat what is cheap and what people offer me... which is too much bread! However I'm generally a healthy person and haven't gained much weight xceot for a bit around my tummy which used to be flat. Now it's kind of bloated all the time.

Thanks for reading this far.

18 Replies

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  • Hi BathshebaS!

    You are young for PMR and it is statistically unusual but not unheard of. There are a number of younger women on this forum.Your response to Pred. Is the deciding factor I think.

    Personally I would remain on the tiny, negligible dose, it won't cause side effects and it may just keep the inflammation at bay until you get home. Which part of Australia are you from? My eldest daughter, partner and two children live near Coffs Harbour.

    It would be difficult but I guess you would be able to get a tiny emergency supply of Prednisalone in Austria, especially with your prescription as proof. I've had to get Thyroxine abroad and they seemed quite used to it, charging by the tablet.

    Carbs bloat me too but don't you just love them?

    You seem to have had a smooth ride with PMR, maybe your youth and good health is on your side. Hope it all becomes a dim memory soon! Best wishes, safe journey.

  • I really wouldn't continue the taper if you have any symptoms and, if it were possible, I'd suggest going back to 3mg and see if that helps.

    The guidelines say "over 50" but the medical literature says (if you read the right stuff) that while it is unusual in younger patients it does happen. I think it happens a lot more than they think because too many younger patients, especially women, are fobbed off with "fibromyalgia", "depression", "somaticism" or "your age". In none of those does pred help - and it certainly doesn't help in fibro which I think is a grossly misunderstood diagnosis that is overused by far too many lazy doctors. So there are younger patients with PMR who are sitting at home not being helped because "there's nothing to be done". I was still 51 when mine started - exactly the same as you describe, so was my response in 6 hours to 15mg, I got up from the computer and walked downstairs without having to plan it! I also saw a rheumy who wanted it to be anything but PMR - as if it was beneath him. I don't care - as long as it isn't cancer or something else life-threatening and pred works that'll do me.

    What do they use in Australia? I don't know if you can get prednisolone in Austria, you can't get it here - they use methylprednisolone and Lodotra, a delayed release form of prednisone, which is what I use. as I really didn't get on well with the methylpred.

    Where in Austria are you? How much longer will you be there? I live in northern Italy, Innsbruck is our nearest big town. Here if you had a script I'm fairly sure you could find a pharmacist who would sell you tablets at cost if you have packets/a script, particularly if you said you were going to run out.

    I can imagine your diet - normal Germanic bread-centred at least twice a day and stodge for lunch! I can't imagine how vegetarians survive in Austria...

  • Australian version of Pred I am prescribed is 'Panafcortelone' or 'Prednisolone' available in 25mg 5mg and 1mg. I haven't been able to find any enteric coated versions available here. I say 'Australian' but looks as if it comes from France.

  • Hi Rimmy,

    I also on Prednisolone prescribed by Rheumy, and have been given generic Panafcortelone and more recently Predsolone (which I have been told is from same company).

    I asked about enteric coated ones here (Australia), but not available unfortunately, just double checked with my pharmacist (would save taking lansoprazole). Best wishes

  • Hi AussiePolyDee

    Yes no enteric available for we Aussies apparently. I take my Pred with a big bowl of plain Greek yoghurt.

    The only other health issue I have had until all this PMR/GCA stuff was reflux - it also 'runs' in my family - so I was already on PPI's and have been for years - with no side effects (yet) and that at least helps in this situation as tummy has not really been an issue to date.

    Best

    Rimmy

  • Hi,

    Agree with others you don't really want to think about reducing, even though you are having a restful time.

    You could try taking your tablets earlier, guess you take with breakfast, some people take theirs anywhen from around 2am -6am, going back to sleep afterwards. That should mean they are in your system before you get up properly. Or some split the dose, am and bedtime.

    Might be wise to check with a local pharmacy what the situation is re tablets now, before you get to the stage of actually needing them.

  • Thanks so much ladies :)

    I'm about to move from Tamworth (inland from Coffs Harbour) where I've been for the past two years back to Melbourne where I lived for about 20. I've actually lived in many places around Australia so don't consider any one location "home". I've moved a lot for study and family reasons.

    Currently I'm in Graz. My partner, whom I met at uni in Australia 5 years ago (he was completing electives for his law degree) lives here and I may very well end up resettling here in the future.

    I agree that staying on a very low dose of pred shouldn't do too much harm. I guess I'm just worried about all the side effects I read about. However the idea of having a flare up here in Austria is pretty scary... so many steps!!! Dealing with steps was especially painful before I was medicated.

    When I return to Melbourne I will have to find a new GP and Rhuemy because the ones I mentioned were in Tamworth, 14 hours drive away. I'm just hoping I'll find ones that will treat me holistically because I really feel that there are other contributing factors such as stress that brought this on. In the past 5 years I've separated from my ex husband of 20 years, moved into college accomodation, completed a teaching degree despite having being cut off financially by my ex, been disowned by my father (because I left my ex) and had a legal battle with my ex over our children whom he wanted to take interstate. I also had to learn how to teach at a very low socio-economic highschool which had justifiable reputation for violence! A pretty tough gig! And all through this I was trying to maintain a long distance relationship with my man here in Austria! He came to Australia several times but can only stay for 3 month stints due to visa restrictions. Let's just say that it has been an extremely stressful 5 years.

    I'm taking Panafcourt, Prednisone. And except for the bloating I can't say I've had too many, if any other side effects.

    I've experimented with taking them at different times... basically it doesn't seem to matter so I just focus on taking them with food.

  • We can't post photos here can we? I've taken a photo of the bottle.

  • If you want to post a picture I think you can only do it when you originally post, not when you reply.

    On the page where you write a post it gives you the option to attach a photo. Worth a try.

  • One of the top PMR people in Europe was working in Graz - but he has recently moved here! Four and a half hours drive - childsplay by Oz standards!

    Don't worry about the side effects at this dose - about 7mg is what is called a physiological dose and anything lower should really not cause any long term problems - your body is now making its own corticosteroid, cortisol, again and it is essential to life. There will be more cortisol than pred circulating now.

    All you have described will have put a major stress on your immune system - and in combo with other factors could have sent it haywire. However - the speed you have been able to get to such a low dose suggests that you don't have a severe case or that possibly this is a "reactive" form of PMR and you are on the way to recovery - no promises but it is possible. It is a fairly new concept that a few rheumies suspect exists. There are forms of inflammatory arthritis that function in the same sort of way. Did you have an infection shortly before the PMR symptoms appeared?

  • No, I don't generally get sick... no infection of any kind (except the odd pimple) for years.

    I do have thyroid antibodies though... Graves Disease that was diagnosed in 2006 but which I haven't had symptoms for years. That's obviously another auto immune disease so I'm a bit worried that there's a pattern happening. I developed that soon after giving birth to my third child and having to deal with the stress of my ex husband having an affair. When he confessed me that the affair was based on his assistant's desire to have a child and that she was actually pregnant I remember my body just breaking down. I was still breastfeeding and the shock of this sudden unexpected news had a terrible effect... within months I'd lost nearly 10kg, had a racing heart, hair falling out, hand tremors and took myself to the doctor saying that something was very wrong. I was on the brink of a thyroid storm! However my recovery from that was also very fast. I bounce back quickly from most things.

    Thank you so much for assuring me that my current daily 2mg of Pred shouldn't result in too many long term side effects. And surprisingly I haven't had so much as a cold since taking them, despite the risky situations like long haul flights and working with children.

  • I find that too - one humdinger of a cold per year despite pred!

    Once you have one autoimmune disorder you are more likely to develop another than someone who doesn't have one.

    And what a rat...

  • Hi BathshebaS,

    You will get so much support on this forum, so much good advice read here, since joining (have had pmr for 7 years now.. up and down with pred. depending on flares)

    You're right there regarding stress... certainly doesn't help and exacerbates any underlying conditions.

    Regarding autoimmune diseases.... have you been tested for Coeliac Disease? I ask this because I had similar symptoms with bloating and was diagnosed with Coeliac Disease about 8 years ago. Also had Graves Disease 40 odd years ago (was on Neomercazole) and now thyroid 'petered out' on Oroxine.

    Think there is a pattern with auto immune diseases, so may be a good idea be checked out for Coeliac. There isn't a great deal of awareness here (Australia) regarding Coeliac (lots of knowledge re Autoimmune in the UK) and the support forums are excellent. I have actually referred info. to my GP and he is very interested.

    Hope your move to Melbourne goes well, Regards

  • Hi Dee :) thanks for your reply. Yes I've been tested for Coeliac and it was clear. My GP is quite concerned about my anemia and requested a test after my gastro/colonoscopy nvestigstions slso showed nothing wrong. It's all a bit of a mystery as there is no history of any of these conditions in my family. I think the bloating might be from the fluid retentention. Ve always retained fluid too readily eg during pregnancy and monthly prior to my period so I'd say it could be the effect of the steroids. I've never had any digestive issues to speak of. But thanks for your suggestion. I agree, I've been reading this forum for several months now and the members are so helpful toward each other :) I don't know anyone n my real life with either Graves or PMR and so this is quite comforting. I really hate taking daily medication and was really bad with the carbimosol (spelling?) too but fortunately I went into remission with my thyroid and haven't needed to continue. One thing I did do when diagnosed with Graves was have weekly acupuncture for several months. I also took L-Carnatine and reduced iodine in my diet. Maybe they helped to settle my Graves down quickly? My GP at the time was quite surprised and I think it annoyed my Endo as he was keen to destroy my thyroid permanently! I won't get too smug about that though because I know that I could have another Graves flare up too. Just pleased to have avoided thyroid replacement medication so far! Also very keen to try acupuncture for this PMR and see how that goes... it certainly can't hurt.

  • Hi there. Just wanted to join the pmr and graves gang that's starting up here 🤗. My graves was about 18 yrs ago. Carbimazole for 18 months got rid of it. Well done on fast taper but agree with others don't reduce while experiencing symptoms, I did and nearly ended up where I started pain wise. It's under control on 11mgs at present after 2 yrs (got down to 9mgs) but also have GCA so was on much higher dose originally (60mg) All the best and enjoy your break cc

  • Anaemia is commonly found in a/i disease of almost all sorts. It is really common - but somehow GPs often don't seem to know about it!

  • Hi everyone and thank you all for your helpful replies.

    Regarding exercise and activity levels:

    I'm starting to wonder if the reason my shoulders are slower to feel better than my hips/legs is because I'm not using them enough.

    I don't own a car and I've always walked a lot. After I commenced Pred my legs and hips returned to their pre-illness state very quickly. Even my injured knee settled down enough for me to walk several kilometres per day without pain. My shoulders though are a different story.

    During the worst weeks pre-diagnoses my shoulders were so bad that that I couldn't lift a cup of tea without intense pain and weakness. I had to kind of wedge my elbow into my waist area to provide extra leverage. Rolling over at night was painful and I couldn't support myself on my elbows if I needed to sit up.

    These days only the mornings are painful but at least I feel a bit stronger and can do things like lift hot drinks.

    Interestingly before I left Australia, despite some initial discomfort, I decided to swim 10 laps of an Olympic sized pool (overarm). I just wanted to see if the extra exercise would help my shoulders... from what I recall it certainly didn't make things worse and might have helped a bit.

    Since being in Austria I've wanted to do more shoulder exercise and have spent a few days doing some pretty intense gardening for my partner's parents. I'm talking 2 solid hours turning soil (digging very deeply). I thought to myself "ok, this should stir things up a bit... even without PMR I should be sore the next day". Surprisingly the extra heavy gardening had little effect. I even dropped 1mg around this time without anything changing.

    So I seem to have established that extra exercise isn't making things worse for my shoulders. What I need is to simply use them more often. I'm assuming that during intense exercise the body is forced to make extra chemicals to soothe and heal the muscles?

    So I'm thinking of using small weights. Has anyone else had positive results from a change of activity?

    I want my shoulders to feel as good as my hips!!! I walk at least 3km per day... last Monday I walked 6km (around the Grüner See) lake national park and felt great.

    Currently still on 2mg Pred. Daily. Confession: I also am struggling to give up coffee and my glass of wine when I'm cooking dinner.

    Has everyone else found the shoulder pain worse than the hip/leg? Or is this just me?

  • Why give up your wine? I didn't!

    Everyone is different - you have to try and see what works for you. It may be that the bursitis in the shoulders was worse than the hips - everyone's different there too and my hips were awful but my shoulders fine though stiff.

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