I was diagnosed 2 weeks ago. ...text book symptoms of PMR. Been on pred 2 weeks. Started at 20 which took all pain away then down to 15 and been on 12.5 now for 2 days. Can feel it slightly but bearable and can control with paracetamol ....I have read about coming off gradually and need to convince my GP to give me smaller denomination tablets. Any advice on how to explain to them? When I ask and mention I read it on line I saw him glaze over. Consultant expects me to down to 10 by next time I see him in 2 weeks..With 2.5 jumps..is this possible? Usually am very active and was due to and managed to run 10k on Sunday but very slowly with no ill effects...have cut gym sessions in half and hoping I'm not doing any damage..
Getting GP to give me small denominations of pred? - PMRGCAuk
The consultant may expect you to be down to 10mg in a couple of weeks - but I doubt the PMR heard and even less that it listened! PMR has its own rules and nothing a doctor can say or do will change that.
If you are only 2 weeks into PMR then I'm not surprised that you are feeling it at 12.5mg. It also sounds as if your doctors are expecting you to reduce at that rate and get off pred in a short time - I'm afraid that is very unlikely to work. PMR is a chronic illness and a more reasonable expectation is up to about 2 years - even so that is only found in about a quarter of patients and they are at a higher risk of having a relapse than others. About half need pred for up to more or less 5 years - and that is the length of time that is quoted in the biggest German rheumatology textbook.
You could try showing this paper to your GP (and rheumy I suppose though they are sometimes a bit precious about being experts)
where one of the top PMR/GCA experts recommends 6 weeks at 15mg, 6 weeks at 12.5mg and then a year at 10mg. They find this reduces the rate of flares to 1 in 5 rather than 3 in 5 which is more normal with other reductions. We belive you can pretty much avoid flares altogether if you go as slowly as we suggest - and the "Dead slow and nearly stop" approach has been approved by several rheumatologists for their own patients, is being trialled by a research group in the north of England and is one of 2 similar approaches which is sent out on request by the PMRGCAUK northeast charity site.
You have to clear out all the existing inflammation before you can titrate to find the lowest dose that manages the new inflammation that occurs daily - your rheumy isn't allowing you to do that as a good basis for reduction.
Thank you. Just spoken to GP who is sticking by guidelines and tells me to do as advised and then complain if it doesn't work which is probably sensible advice. So do you think I should go back to 15 for a week or just stick with 12.5? I have a bone scan tomorrow as am fortunate enough to have private medical cover. It's all so scary. Also I try to avoid bread but eat jacket pots instead now worried that wrong too?
Sorry to be a pain with my questions
If the 12.5mg is holding it then stay there I think - otherwise you will have no comeback with the rheumy if you didn't do as he said. Now you have a diagnosis you could - if your GP were willing but it doesn't sound as if he would be - be managed by him without the rheumy. Are you seeing the rheumy privately too?
It is all very well the GP saying "complain if it doesn't work" but he isn't the one faced with the pain is he!
As for diet - there is nothing WRONG or right. It is just that many people have found that cutting down on carbohydrates in general and especially the manufactured stuff helps with the problem of weight gain with pred. For myself, I know that if I eat more than a very small amount of carbs I don't lose weight which is a big incentive to me to eat loads of veggies and salad, which I enjoy anyway. I never bake these days - it tended to go to waste as OH doesn't eat cake at all. I'm allergic to something in the structure of highly commercialised hard wheat so that isn't much of a trial not eating it! I eat rye and spelt but only very occasionally, like potatoes - but I only eat 1 or 2 small ones when I roast a chicken. You have to experiment a bit - you may be fine eating far more carbs than me, or perhaps you will be like me but there is no way to know without trying.
The trouble is the medical profession seem to go for gold in the reduction of steroids and presumably some people are OK or do not complain. I think they expect people to shout if there is a problem, as the doctors have never had PMR and steroids it is difficult for them to understand what is going on. Also GPs are in awe of consultants it seems. When are you having another blood test? That may show how the inflammation is being controlled. Also have you been given vit D and calcium supplements by your GP to counteract the steroids?
I gave up gluten and simple carbs as I had heard it stopped the moon face. It has worked, but I may not have got it anyway. I try and include anti inflammatories and have become a real food bore. The only food advice my rheumy gave me was cut down drastically on salt.
Aw thank u out when I said I had researched how to modify my diet the consultant told me not to put myself under any more pressure and just eat what I liked and take the pills!
I think my rheumy only mentioned the salt as he hadn't a clue about diet! In my case I just found the nutrition interesting.
Hi read through your post again and really interested on how you modified your diet. Do you pick out gluten free foods specifically? Do you take ibuprofen and what do you eat to balance this? I always assumed that my lifestyle was 90% healthy. ...loads of fruit and veg only bread once a week after run club but balanced with Friday night lager and crisps and the odd glass of wine with my mother. I am also chairwoman of a run club....plan to retire...A skyride cycle leader ... still manage to use my bike all the time thank goodness.. although sometimes have to lift my leg with my hands to mount it...I also attend the gym four times a week like clockwork doing pilates ...spinning which I am struggling with...body pump which is okay now meds have kicked in..rowing and cross trainer. Any advice on say what I can have for say lunch at work other than jacket potato with salad and chicken which is my norm... is rice and couscous okay?
No I don't pick out gluten free foods. I did try some bread just once and it was quite disgusting I thought, so I just exclude foods with gluten. Interestingly enough I don't really miss it, although very occassionally if I go out I might have some bread. Potatoes, rice and couscous are OK in small amounts, white rice is not so good as brown for example. I don't like rice or couscous! I eat potatoes with their skin on, also I eat fruit whole I don't make smoothies etc. I have just read something on prebiotics as opposed to probiotics which says how important whole fruit is and how whisking it up changes it. I said I was becoming a bore. I find if I am shopping I have started to shudder at the contents of people's shopping trolleys or if people are eating on TV. I probably need therapy!
I find myself shouting at the TV (and Facebook) when somebody extols the wonders of getting all your 5 a day in a smoothie and how fantastic this £megabucks food processor thingy is!
They need the therapy - teaching how many calories/how much sugar is in a smoothie and it hits the bloodstream in one big spike!
Meant to say in my other epistle - sugar is a major inflammatory substance so the less of it or other refined carbs we eat the better.
Am I as boring as you piglette?
You are certainly not as boring as I am. If I go out for a meal with friends, I tell them the vitamin content of everything, whether it is anti inflammatory etc etc as I see their eyes glaze over.
I was going to suggest my gardening group tried quinoa for our trials next year, but have gone off the idea as it seems easy to grow but difficult to extract the quinoa bit. If anyone does try to grow it I would be interested though.
Next time I'm in the UK we'll have to go out for a meal - I promise I won't glaze over! But I've had a long and hard training about ignoring other people's dietary criminality - OH believes spuds only come as chips (French fries) and any meal must have meat in it. So even if I make a veggie dish (e.g. cauli cheese) it comes with a serving of ham - a meat he eats daily. In fairness, he rarely eats more than 4oz raw weight of meat per day.
He's survived a cancer that should have killed him for 21 years - so who am I to complain?
Like piglette I eat a low carb diet - and have lost a lot of weight even though still on pred. I find if I eat more than a very small amount of carbs I simply don't lose weight - but everyone is different.
I used to be gluten-free when I lived in the UK because I have a specifically wheat allergy (very probably associated with the autoimmune part of PMR) and gluten-free was the only way to avoid wheat in the UK at that time. I eat large bowls of salad and loads of vegetables with meat/fish in moderation - but I enjoy it and don't feel deprived at all. The itch and rash if I eat wheat is excellent aversion therapy! That means I can't eat couscous as it is made of durum wheat which is definitely not gluten-free. However, quinoa is and you can use it the same way and make salads like bulgar wheat salads using it instead. Buckwheat is also a good substitute - despite its name it isn't a wheat. I've just bought the River Cottage Light and Easy cookbook which is recipes that are deliberately wheat and dairy free - lots of scrummy ones and a good read!
If you are on pred ibuprofen is a no-no and I think piglette means she includes anti-inflammatory foods in her diet - oily fish (several times a week), turmeric, garlic, nuts, dark leafy greens spring to mind - all part of the famed Mediterranean diet which itself is said to reduce inflammation over a couple of months.
I would suggest you consider cutting down on the spinning classes - you admit you are struggling. Despite pred, in PMR your muscles are and remain intolerant of acute exercise and not only are unable to tell you soon enough while exercising that you are overdoing things but also take far longer to recover afterwards. With training things can be improved - but it used to take me from December to February to build from 3 very short ski runs 2 times a week to being able to ski most of the morning , still on shorter runs, or a couple of longer runs 3 or 4 times a week. The rests on the lift between runs was essential - hence the difficulty with a longer run. Skiing on 2 consecutive days would leave its mark!
Management of PMR pain and stiffness is not just a case of popping the pred pills - you have to contribute to the management with pacing and resting appropriately. With rest periods you will achieve much more overall - and it is the same with going to the gym.
PS - sugar and refined carbs are major inflammatory substances - a very good reason to cut them out! I don't exclude them altogether, I live in the land of the gelato, but they are a very rare treat and only in small amounts when I do succumb to temptation...
Not boring me at all I have a vegan friend who makes a living from whizzing up muck from veg..... why make green slime when you can just eat it. So pleased you agree. You have all made me feel so much more positive and will take on board the heavy exercise tip....intend to chill about everything. Just eaten my pepper salad with sardines and boiled eggs and it was scrumpy. I ran and did spinning so I could afford to eat cake now I can't have the cake and so will walk or jog and gently cycle and enjoy the view. Will look at quinoa....although doubt I will attempt to grow it!
No, I get offered sardines on a regular basis by my fish-lady but really can't "do" the bones! Most other whole fish are fine - now I've worked out how to bake them in the oven!
Quinoa is an acquired taste, a fairish vehicle for the other stuff. I think buckwheat is better - especially as a cake but that's another story!
Will look up buck wheat...hmmm cake!
It's a local delicacy here - wheat didn't grow in the mountains so a lot was done with buckwheat. The cake is made with ground hazelnuts or (even better) almonds and has a cranberry jam filling. This is a local recipe - I don't use breadcrumbs (WHY I ask myself, otherwise it is naturally gluten-free!)
(This where I live by the way)
Sounds as if your GP is not very experienced with PMR - no change there then - but that doesn't help you! And as for the advice to do as you are told, and complain afterwards, beggars belief.
You rheumy is obviously one that thinks a short, sharp course of Pred sorts the problem, and it may have for some of his patients, but as PMRPro states it's not the norm. If you think 12.5mg is controlling things, then stay at that level, but I wouldn't try and get down to 10mg within the next 2 weeks if you are still having pain even though the expert might wish you to! Unless you wish to prove him wrong! Is there anyway you can speak to rheumy, or his department before your next appointment to explain your situation.
Let's face it: if a short sharp course dealt with it - it probably wasn't PMR!!!!
Quite! But as we all know some medicos would like it to be - as would most patients! But hey ho, WE know its not going to be.
Wouldn't it be lovely - even a 6 month course and all done and dusted would be like being in heaven ...
Loving your advice thank you so much x things pretty bleak here my husband has just undergone surgery for bowel cancer and is still in hospital. He has liver surgery to face next. I know that getting a moon face and gaining weight seems very minor in comparison but it matters to me. You are all so kind x
I do feel for you, and send my best wishes to you and your husband through this very difficult time. Everything always seems to come at once doesn't it? I know from personal experience how difficult it is to cope with PMR GCA as well as worrying about a loved one who is seriously ill. Take care, and hopefully you will both be on the road to recovery very soon.
Of course it does - and you are also allowed to feel that way. Been there - not for bowel cancer but OH had what is usually testicular cancer but it was all tied up with his lungs. It was a very "interesting" year as he had 9 lots of chemo, surgery to remove what was left of an originally rugby ball sized tumour together with most of a lung and finally radiotherapy. He is still here 21 years later so it was worth it even if he is deaf from the chemo. But I do know how you are feeling and it is no wonder you have PMR. If you have cotton-wool brain you have an extra excuse - I felt totally numb between my ears a lot of the time and I wasn't even on pred!
I do hope the rest of his surgery goes well - and that you enjoy pampering yourself with learning about new foods. You too deserve to have something nice - being a carer is very hard work, especially mentally I think. I neglected myself when David was ill and I shouldn't have because it caught up big time a few years later with first burnout and later the PMR.
By the way - red wine is an anti-inflammatory so that doesn't have to be chucked out!
That gives me hope thanks x glad to hear he recovered. Chemo is evil stuff and really not looking forward to that again
I was reading these posts last night and was overwhelmed with sadness and sorrow, at all your husbands and you have been through. Forgive me, but I just couldn't let this moment pass without letting you know that my eyes closed last night with you all in my thoughts and prayers, and that I have been thinking about you all. I realise that these posts are from 7 months ago, so I really, really hope that things have improved.Also Adamaxx, that your PMR is improving.
I send you all my best wishes.
Thank you - for me it all improved about 20 years ago. PMR is just a bit of a hiccup and doesn't greatly cramp my style as long as I take enough pred. And it would be a brave doctor who tried to convince me to stop when I need it. But I do have 2 very sensible doctors whose attitude is "You need what you need".
If/when you are ready to reduce by small amounts, there's a pill cutter tht works even with very small pills. I have succeeded in cutting a 5mg tablet in half without damaging either half. Ask in your pharmacy. But as the others have said, do NOT rush things! If you reduce too fast, you may well have to go back up again.
What make is that AD? I'm not sure whether mine is just suffering from old age/overuse or I'm losing my touch! They save a fortune here by having just one or two tablet sizes and tell you to cut them. Though funnily the tablet that causes me most trouble is a fairly big one...
The brand is called 'Safe+Sound'. It came off one of those racks of useful products you find in pharmacies. I have just checked and found that it's also available on Amazon - of course!
There are coated pred tablets that should not be cut of course. One popular type is red 5mg and brown 2.5mg.
Through advice on site I informed my GP he was able to prescribe 1 mg tablets as he told me they only came in 5mg ones and therefore had to cut down 5mg a time .I now have a supply of 5 and 1mg so no cutting pills or dropping the cut half on floor then spending 10min on hands and knees trying to find it.
Bliss I can go down or up 1mg at a time .
You can also get 2.5mg pred
If it is the brown version it MUST NOT be cut.
Also, using it alongside the white non-coated sort can be a bit tricky as the ordinary white tablets take about 2 hours to work, the enteric coated can take 4 or 5 hours or even longer to be absorbed and get to the blood stream. If you are relying on a dose in the early morning to get you going for the day and part of it is enteric coated you may find the effect isn't as good as you hoped. On the other hand, you could take the enteric coated version before bed and it would be working before you got up next morning.
it such fun reading everyone reply knowing we all have the same problems make mine easier to manage
i have been cleaning eating and i think i am feeling better not so tired in the afternoon also i have super sweet tooth and it sooooo much better
But Andamaxx the one thing i remember reading somewhere on line or in Kate's book
BE GOOD TO YOUR SELF xx
Agree this site is total godsend. Slept last night and now feeling so positive. My daughter is coming with me for my bone scan today which is a relief as was nervous of going alone. My boss told me yesterday to take time out and go get antidepressants that has spurred me on not to go down that route. Not sure how my husbands cancer will pan out but he needs me to be strong and you people are really helping me. I hope I can do the same for others too.
yes I intend to be kind to myself x
Absolutely nothing to worry about the bone scan. I had mine on the NHS and had to wait while the operator had lunch, I was the only one there. They had a row of chairs with no arms or anything to grab onto to stand up, so I had a go at the hospital about it and they let me sit somewhere else in a comfy chair with arms and then someone came and told me that the machine was ready for me! I think PMR is making me very demanding, M&S even got a young lad to take my shopping to the car the other day.
You are right but the operator was a bit weird and glad my daughter came too....she helped me remove my belly bar which she said he was staring at and couldn't make out what it was! Think results were quite good so maybe all the years of activity have paid off. My husband was very fit and active before this cancer just hoping it helps him too....although just got a leaflet about what he can eat with his stoma and it would appear to be the opposite of me... Low fibre diet! Will have to spend more time in food preparation and less in the gym from now on I think.
I cook 2 different meals almost every night - takes me about half an hour! I eat a ton of vegetables of one sort or another, he eats NONE! He likes ham/Wienerschnitzel/burgers - I eat none of them willingly. Definitely not Wienerschnitzel - with or without noodles (why did the songwriter think Austrians ate "Schnitzel with noodles"?
I think - I don't know for sure not having one - that eventually things do go a bit nearer to normal about what he will be able to eat with the stoma. Is it hoped to be able to reverse it? It is sometimes.
It took a while for my GP to grasp that I needed 1 mg and 2.5 mg tablets of the Pred to enable me to reduce the dose.......you may have to write it down! Good luck.
Someone said that you can get an emergency pack from a chemist if you show your steroid card - not sure if that is universally true mind - so when they forgot their handbag and needed enough for the day they asked the chemist to supply them with a pack of 1mg tablets - which they knew from the forums are available and their GP insisted were not. The production of the half-used packet at the practice resulted in the provision of 1mg tablets on prescription.
It occurs to me: when a pharmacy is short of tablets of a given denomination sometimes they will make it up with x packs of a lower dose - so would they give 5 packs of 1mg tablets on request I wonder?
Oh that sounds good. Struggling today and would love to have just a bit more without going up a whole 2.5mg
Not what you're looking for?
You may also like...
to stay at 12.5mg and to have a blood test one weeks time. so I am quite happy about this.
From 40 pred initially I am now reducing from 5 to 4 by the dead slow method. I have been down to...
been on Pred now for 2 yrs and I’m struggling with my pain and weakness on my 3mg dosage (down from...
My PMR journey has been pretty good up until now. Did 6 weeks on 9mg and felt great and...
Been on Pred since beginning March 15ml gradually reduced 12.5, 10, to now 9mm , my aches and pains...